Six years and counting…

It’s been six years. The year was 2013.

Six years since I was wheeled into the operating theatre with a big smile on my face because I was finally getting rid of my colon. It represented so much more than just losing a piece of my insides though. The surgery gave me hope that things would get better. That it would be a cure of sorts. That I’d lead a normal life again. No more pain and bleeding when I went to the loo. No more urgency. I’d be able to leave the house again. I woke up with Rosie, my amazing ileostomy. We’ve had a good time together. She’s got a bit of a crappy job (excuse the pun) but she does it remarkably well Alhamdulillah! No regrets on that surgery, or the next one.

Thinking back now, that was a different version of me. Our experiences shape us into who we are. That person was optimistic that things would change… and change they did. Fast forward a couple of years to 2016 and I made the decision to leave home. I couldn’t have foreseen that. I’d been hiding the abuse from everyone around me. Even now, it’s hard to type ‘abuse’. But that’s what it was. Psychological, emotional, mental… whatever you like to call it. I was so ashamed. I thought that it must have been my fault and the abuser must be protected at all costs.

I know my family will never accept that I left home. Our culture dictates it. Unmarried women don’t live on their own. I was never very good at following the culture, my rebellious streak was always a mile wide.

Oh, I’ve been to visit a few times. I recently stayed for a few weeks. It was lovely to spend time with my mum. But it’s never enough… I’m tired of explaining that I won’t be moving back. That I can’t just ‘forget it’. That I don’t care what people say! Who CARES if they spread rumours?! Who cares if this is shameful for everyone? Strange how abuse isn’t shameful yet me deciding to remove myself from it IS.

I was full of hope when I left. I thought this moving on thing would be easy… I was soon disabused of that notion. It’s the hardest thing I’ve ever done. I thought that I’d finally be free of my mental shackles and everything would be great and I’d soon be able to stop taking my medication for PTSD/anxiety/depression. Oh, how wrong I was. Nobody had told me that healing would be brutal, and painful, and raw, and emotional. And that it takes years, not weeks. I didn’t know that I’d feel like I needed to be ripped apart before I could put myself together again. That I’d still have days and weeks when facing the world, including those who are closest to me, and love me, would be terrifying and I’d shut myself away. Because that was all supposed to disappear when I left home, right? There was no reason for me to still feel like this!

Turns out it doesn’t work like that. There’s over 20 years worth of trauma in my brain, it’s going to take time to heal from it all. I’m only just coming to that conclusion by the way. Better late than never, as they say.

My new life started out well. 2017 was one of my best years. Then my emotions caught up with me and I kept ignoring them… and ignoring them. I think you know what’s coming. I’ve been on a downward spiral with my mental health. I pushed away my nearest and dearest. I was awful. I’ve felt so guilty for feeling this way when everything was now supposed to be all unicorns and fairy dust. To top it off, my family used it as a way to try and convince me to return. ‘What’s the point of you being so far away if you still feel like this?’ I didn’t have an answer. I’m tired of defending myself. I know I hurt my mum deeply by staying away. However on the other hand, she tells me she’d be fine if I was living away due to marriage, but this isn’t acceptable! Our culture has a lot to answer for. They’ve all but said: okay. You’ve made your point now come back like a good girl.

However… I need to be selfish right now. My head is a mess and it needs sorting out.

I want to own my story. I’ve been through a heck of a lot. It’s time to stand up, work on my flaws and strengthen myself from within. I have the power to change myself inshaAllah. No one else can do that for me. Even as I’m writing this, I’m panicking. I feel so weak. My heart is beating fast and my breathing is shallow. I feel scared that things just won’t get better. That I won’t have the strength to fight this battle. I must. I really must. I’ve done it before and I can do it again. I wish it weren’t so difficult but the most worthwhile things are never easy.

I don’t think this post has a conclusion. It’s just a jumbled up rambling of my thoughts. I’m not sure if anyone will even read it but it feels good to get all this out. I’ve missed the blog. You might be seeing me again soon!

Oh, feel free to point out any typos. It’s late and I don’t want to read this back, I’ll only end up editing things out.

A time of…. joy?

Eid is a time of happiness and celebration. Me, I’m sitting here feeling emotional, frustrated and sad. So sad.

How do I even begin… I’ve stopped blogging lately because it would have meant writing about things that are difficult to express. And it would have meant exposing the horrible behaviour portrayed by those who claim to care. I’ve kept certain aspects of my life private even though it was those things which made my illness so so much worse. The stress caused more flare ups than I could handle. No more. I’m done. I need to vent and this, for now, is my outlet. I only ask that you don’t judge me too harshly.

So all those blog posts about IBD and rants about people… it’s been a few years of posting. Throughout it all I was also dealing with domestic abuse. It was mostly psychological and at times physical. Just after diagnosis in 2010 the physical abuse was the worst. The psychological abuse continued up until I left home in 2016. It’s been to date, one of the most difficult decisions I’ve ever made. Yet I couldn’t see any other option. I tried. God knows I tried. Every suggestion I made was shot down. It was made clear that my only option was to remain in my parents’ home, probably until I die.

You see… when someone is smashing crockery and leaving it for people to walk over, knowing full well that there’s a partially sighted person in the house, it gets a bit too much to handle. When heavy objects are thrown and narrowly miss you by centimetres, it gets a bit too much. When there’s a dent in the wall where a glass of milk was thrown because food wasn’t ready in time, it gets too much. When there’s constant yelling which causes panic attacks daily, it’s too much. When you’re expected to wait and wait and wait for a lift because you’re a woman and you’re not allowed to drive… it gets too much. When you’re treated differently because of your gender, it gets too bloody much.

The worst thing is that they use Islam to justify it. How DARE they. I cannot understand nor explain how anyone can take the beautiful example of our beloved Prophet ﷺ and tarnish the name of Islam in this way. The Prophet ﷺ taught us that daughters are a mercy. That paradise is gained upon serving your mother. That a wife completes half her husband’s religion. In his last sermon, the Prophet ﷺ ordered men to be good to women.

I’ve been to visit family a few times since I left. Each time left me feeling emotional, sad, angry, depressed and anxious. Without fail. I visited out of a sense of duty to my parents. To try and keep good relations. I’m wondering now why I bothered.

With Eid being tomorrow, the emotional blackmail has started again. I’m disobedient. I refuse to follow Islam. I have no respect for my parents. Etc etc. And I’m past the point of caring. I’m spending Eid alone, which is hard enough as it is. However it’s much better than visiting family and putting up with the crap that’ll be thrown at me. The guilt tripping is wearing me down so I feel better off here, in my own home.

It would be wonderful to spend time with my cousins but that comes with a hefty price. I’m not prepared to pay that price. My wonderful cousin even sent me an Eid gift because I won’t be with them. It made me so emotional.

I don’t even know what I’m going to do tomorrow. I feel crap. Ramadhan has been an emotional rollercoaster. I moved into my new flat (yay!) which is exciting but there’s such a lot to do. The estate agents for the old place are being a pain in the butt. I miss my family so much. I wish things were better but I have no idea how to make that happen. I can’t go back like they’re telling me to. I just can’t. So I guess I’ll just carry on as I am, hoping and praying for a solution. Crying. I keep reminding myself though that this is still better than the situation I was in two years ago. It doesn’t seem to soothe my heart though.

Eid Mubarak all.

A Blessed Journey (and airport annoyances)

Hello/Assalamualaykum dear readers.

There’s just one day left until my FIFTH STOMAVERSARY inshaAllah! Yikes! Five years since little Rosie was lovingly (I’m sure!) created by Mr. Pinkney, who I think is one of the best surgeons in the world. Five years since she rose (see what I did there!) to the challenge and has been doing her job like a trooper ever since. Can’t say I envy her, it must be tiring pushing poop through every second of every day. Five years since I’ve been a Bag Lady! Five years since I joined the Permanent Tummy Poopers Club. Five years since…. that’s probably enough for now.

I had planned a celebration with my friends (HARRY POTTER THEMED whether they agreed/liked it or not) but the Almighty had a better plan, as always. Five years to the day when I promised Him I’d perform umrah if He made the op successful… here I am in Makkah Mukarramah. I’m alive and kicking so I’d say it was pretty successful! I’ve only had a couple of blockages (all my own fault lol) and Alhamdulillah just a handful of leaks. Maybe… four. Or less. That’s pretty good going Alhamdulillah!

It just goes to show that I need to have more faith in Him. When I left home in 2016, I thought that was it. I wouldn’t be able to visit this blessed city again as I need a mahram for that. Allah really does work in the most wonderful and mysterious ways. I’m here with my brother and my dad will be joining us either today or tomorrow inshaAllah.

This trip has been fraught with tests, both emotional and monetary. Before we even set off, there were delays with passports, then visas (due to my passport 🙈) then my visa was messed up… it was just one thing after another. I’m ashamed to say I wasn’t as patient as I ought to have been. I got frustrated. I was angry. I was annoyed and wanted to blame someone for these issues. It didn’t help that my anxiety was sky high because I was visiting family again. They tried, bless them, but it’s hard not to associate being back with the emotional torment I went through for years. Anyway that’s a story for another day….

Eventually we were on the flight and it mostly went without a hitch. There was a sticky moment at Frankfurt Airport when the rather ‘lovely’ security lady started tugging at my bag, and fondling it. She asked what it is and for want of a better word, I informed her that it’s a colostomy bag. I know… I have an ileostomy bag but most people don’t seem to be aware of that! I thought I’d have better luck describing it as a colostomy bag.

Well, that didn’t help in the slightest. She practically yelled ‘colostomy bag?!’ Then preceded to VERY LOUDLY ask her colleagues if they knew what it was. In front of everyone. Now, I’m not too fussed about my bag. In fact, I’m rather proud of it. But lots of people DO struggle with coming to terms with it. It would have been absolutely mortifying for such a person and could well have led to a very public breakdown. I was rather annoyed (to put it mildly) at her behaviour. It was hugely insensitive and totally inappropriate.

She carried on fondling it and I let her. I mean.. I don’t think she’d have been able to pull it off and even if she did, it would be a lot worse for her than for me! Part of me wanted her to get a good sharp shock when she realised she was fondling my poop. Teehee!

I was then taken to a side room and asked to show her the bag. Call me petty but I ensured that I lifted the flap so she could see my output (poop) in all its glory. Nothing less than she deserved. I helpfully threw in the French word for poo as I didn’t know the German one. I just assumed they’d be similar. She seemed to get the message 😉

Thereafter she decided it would be sensible to tug me here and there because I’m visually impaired. None too gently either! She only let go when my brother intervened and told her it isn’t necessary. I should have spoken up and I regret not doing so. Truth be told I was exhausted. Beyond shattered. Just didn’t have the energy.

Once we were out of her way another airport employee preceded to thank us profusely for being so patient. She said the other woman was probably stressed. Stressed or not, it doesn’t excuse her disgusting behaviour. I think I’ll be making an official complaint although goodness knows if it’ll make any difference!

Oh, that’s another thing. I completed the whole journey from Birmingham to Jeddah, with a stopover in Frankfurt, with my white cane! Feeling rather pleased with myself. It helped that I had my brother with me but I’m pretty sure I’d have managed just as well on my own. A few years ago this would have been unthinkable. It’s amazing how we can adapt and overcome. Hmmm that sounds like a slogan doesn’t it?!

Sooooo… Umrah with a bag – how goes it?! Answer: absolutely fine. I did have the really odd feeling during Tawaaf that I’m pooping in such a holy place but I quickly reminded myself that I’m not missing out on any blessings! Islam is a religion of ease and in actual fact I’m gaining MORE blessings and good deeds because I’m making the effort despite the physical pain I was feeling. Having an ostomy doesn’t prevent me from performing any acts of worship. I can manage my bag here just as well I do anywhere else.

It’s honestly no different to being at home. I’m quite adept at changing my bag wherever I am so I suppose that helps! I’ve only been here a couple of days but I honestly haven’t had any issues Alhamdulillah.

I made sure I packed all my bags and supplies in hand luggage so they wouldn’t get lost. Glad to say they remained intact. I brought 30 bags with me for 11 days… I know it’s going a bit overboard but I’d rather have too many than too few! Actually that reminds me.. I might go check if the pharmacies here stock them. Just for info’s sake and to reassure any future travellers to the Haramain.

When I arrived at my family’s house a week or so ago, events conspired to ensure that I didn’t have access to my luggage for a few hours…. hence no bags! I desperately needed to change so I sent my cousin off to the local hospital to request a couple of bags. They happily obliged and also sent along protector wipes, dry wipes and disposal bags. Excellent service. Our NHS is amazing. I dread to think what will become of it if the evil Tories have their way. Let’s face it, if they’re happy to take meals away from kids then there really is no limit to their greed and selfishness. It does worry me….. sigh. God help us.

So to celebrate my fifth stomaversary, I’ll be offering extra prayers of thanks in the Blessed City Of Makkah. Islam’s holiest Mosque. There really is no better place on earth. I can’t think of a better celebration either.

Now over to you, dear readers. I’d love to hear what you’ve been up to. If you’ve stuck with me despite my flaky attitude to blogging, thank you. I really don’t deserve your support however I truly appreciate it.

Also, if anyone has any specific Dua requests while I’m here, please comment or email me at gutlessninja@hotmail.com

I promise I’ll write them down and make Dua in front of the Ka’bah as long as I’m able to.

I’ll end it here for now. Peace.

Aisha AKA The Gutless Ninja

A voyage of self-discovery.. 

Yes, this is going to be one of those blogs where I talk about myself but I’ll try not to make it too annoying! I won’t put too much hippy stuff in here either (although I have found meditation and mindfulness to be rather wonderful alongside other treatments!) 

I’ve struggled with blogging lately. I’m feeling a lot better Alhamdulillah and I felt I might have outgrown this blog….. fear not though dear readers. I wasn’t ready to give it up either. I won’t be writing as much as I used to about IBD, guts, blood and poop but I can still write loads of meaningless drivel, right? That doesn’t need to change. :p 

I read a few of my posts from last year and it was pretty hard going. I’m so very glad I wrote throughout the Darkness I went through. I was drowning in it. I need to be reminded from time to time to help me keep things in perspective. How things change.. finally, I’m seeing the bright light at the end of what’s been a very long tunnel. I always hoped I’d get to this stage but it was difficult to imagine actually being here. Now I’ve started getting my life in order.. I’ve discovered I’m actually pretty resilient. I know, that sounds awfully boastful but I’m told I need to be nice to myself. So here I am, being nice to myself and reflecting on a rollercoaster of a year. 

So.. resilience. Over the past few years I’ve suffered from horrendous trauma. Physical, mental, psychological, emotional.. I honestly don’t know how I coped. I was going through the motions. On the one hand my body was trying to do its best to attack, I was also dealing with the aftermath of surgeries and on the other hand the psychological hurt and abuse caused by those who claimed to love and care for me took its toll. There’s only so much someone can take, right? I’m annoyed at myself for putting up with it for so long. And believing that I was being ‘patient.’ Putting up with abuse of any kind is not patience. Patience is praying then doing what you can to change your situation. It works the same was as praying for a good job then actually going out and searching for that job. It’d be a bit pointless to spend days and days praying without putting any effort in! Not how it works. If someone genuinely can’t change their situation (e.g. Pain) that’s where forbearance and acceptance comes in.

I still feel ashamed to talk about what I’ve been through. It’s pretty crazy to think that I could be pretty open about my bowels and tales of gore yet I couldn’t (and still struggle to) talk about the underlying issues which were making my mental health so much worse. I won’t force myself, perhaps it’ll get easier with time.  

By the way, I haven’t written anything in so long my head is a jumble of words all desperate to escape. Feel free to scroll on by if this isn’t making much sense to you! I need to get a few things off my chest and writing is therapeutic. 

I think I’ve become rather intolerant of what I perceive to be fakery. I’ve scaled down my social circle to a few very close friends (who help keep me sane!) and an even smaller number of family members. (Those who are genuine. A seriously small number. Like.. five. That’s it.) Does this make me evil? Probably. I simply can’t be bothered by people and things I’m not particularly interested in. I’m choosing to focus on what makes me happy. I’ve been focusing on my mental and physical health for almost five months now. It’s a very short period of time but I’m finally getting somewhere Alhamdulillah! I live in one of the most beautiful parts of the country. I’ve been teaching some wonderful girls. I’m looking to go back to college and university inshaAllah. I’ve made some fantastic new friends. I’m doing things for myself and discovering that Alhamdulillah.. I CAN do this! It’s an incredible feeling. So humbling. I also had my second driving lesson last week – this is HUGE for me! Alhamdulillah. I feel so blessed. I never did see myself doing so well.. I think it’s time to believe in myself. That scares me.. it shouldn’t be so hard to accept that I’ve came a long way. Maybe one day I’ll actually believe it eh?! 

All that being said, this is also a difficult time for me. I have so many emotions and thought processes to work through.. I’ve got to keep moving forward inshaAllah. Some days everything feels overwhelming and I have to pull myself up by the bootstraps and soldier on. It’s the only way. Those days are getting fewer however they do exist. I’m not expecting them to go away completely, I wouldn’t be human otherwise! 

I’ve been trying to figure out how and why people can be so cruel. How do they justify it? There’s got to be an inferiority complex there. Not that I’m a psychiatrist or anything. 😛 why else would someone want to harm others or try to make their life difficult? It baffles me. I just don’t get it. What’s the POINT of it all? Argh this makes my brain hurt! I pray that I never become one of them. 

I was sent the following poem a long time ago. It’s beautiful. I’m going to leave it here and hope it helps you as it’s helped me. ❤ 

Take care of yourself and those you care about, smile a bit more and eat delicious cake,

Love,

Aisha AKA The Gutless Ninja

Ps I’ve started replying to emails. (I know.. about time right?) 

I’m still rubbish at keeping up with social media so I’m not going to stress about that! Feel free to drop me a line at gutlessninja@hotmail.com if you want to get in touch. Or you can leave a comment below. I don’t do any TV/documentary work and I’ve been rubbish at replying so apologies if you’ve contacted me about that. 

Yep.. believe it or not, I’ve had three tv offers in the past two years. I’m almost famous! *dons sunglasses* 😎  

Oh and if you find any typos/spelling mistakes do let Be know. If you find any weirdness it was always meant to be there. Ta. 

Crohn’s And Colitis Awareness Week

Assalamualaykum/hello/greetings,

My name is Aisha, AKA The Gutless Ninja, and I was diagnosed with Ulcerative Colitis in 2010. 

Such a small sentence, right? Yet it’s a huge marker in my life. I now find myself referring to life ‘pre-diagnosis’ and ‘post-diagnosis’ and boy, do I wish I could knock some sense into the pre-diagnosis me and tell her to get a grip, enjoy every single day and NOT take the luxury of pooping for granted! 

That’s right, the luxury of pooping. Although UC is not just a pooping disease, it was one of the major symptoms. I was rushing to the bathroom up to twenty times a day, passing painful, bloody diarrhoea. Add the awful, cramping stomach pains (Carrie Grant has described them as being WORSE than childbirth) which felt as though my insides were being twisted then poked with hot knives, the constant fatigue, skin issues such as rashes, aching joints, rushing to the loo following every mouthful.. you get the average day in the life of a person diagnosed with Ulcerative Colitis, a form of Inflammatory Bowel Disease. IBD is an autoimmune disease in which the immune system attacks healthy cells and causes inflammation. There is currently no known cause or cure. I feel like yelling this at those who claimed I was faking my illness or that it’s caused by junk food or that ‘loads of people have it and they’ve been cured!’ But I try to be a nice human being so I’ll keep quiet. 🙂 

And the absolute worst thing was that I hid my symptoms. I was too embarrassed to tell anyone that I was bleeding loads whenever I went to the toilet. We just don’t talk about poo, it’s a taboo. Especially in our south Asian culture. This is wrong on so many levels. My silence made things so much worse. If I had been diagnosed sooner, maybe my body would have accepted certain medications and the disease wouldn’t have been so severe. 

So I kept quiet and hoped that by ignoring my symptoms, they’d go away. In case you’re wondering, here’s a short list of some of the symptoms experienced by IBD patients: 


Many thanks to Girls With Guts on Facebook for the infographic above. 

Surprise surprise, my symptoms didn’t go away. They didn’t particularly like being ignored either, so things became a lot worse. I was still too ashamed to speak about it or see a doctor. 

Now, 6 years (yikes! Where has the time gone?!), countless weird and wonderful medicines (mouse juice, anyone?), numerous blood tests, X-rays, colonoscopies and two major surgeries later.. here I am. I’m missing a few bits but I don’t actually miss them. If you’re new to the blog, I’ll tell you: I no longer have my large intestine, appendix, rectum, anus or sphincter muscles. Fun, right? It’s one of the best decisions I EVER made! 

I have an ostomy. The end of my small intestine is sticking out and I attach a bag over it to collect my poop. This has presented its own challenges but right now we’re happy with each other. 

The purpose of this post is to get people talking. Don’t ignore any problems. Nothing is more important than your health. There’s NOTHING to be ashamed about if you notice any problems with your poo! And if you have friends, family or colleagues with IBD, please take a few minutes to tell them you’re there for them when they cancel plans at the last minute, or when they can’t go somewhere simply because they don’t know where the toilets are, or when they’re exhausted after taking a shower and have to rest for three hours. One of the best things any of my friends ever said to me was: ‘I’ve been reading about IBD and how it affects you. Please feel free to talk to me anytime. I may not understand what you’re going through but I’m here for you.’ I was in tears because it’s such a beautiful gesture. 

For those who’ve been following the blog.. I owe it to you to explain my absence. WordPress tells me it’s been around 6 months since I last posted.. gulp. 

I’ve had a lot of struggle with in terms of my mental health and I went into hibernation so to speak. I’ve teetered on the brink of another breakdown. Alhamdulillah, things are a LOT better now. I’ve made some major changes in my life and I’m learning to be happy again. Last month was full of smiles and for the first time in ages, I laughed until I was gasping for breath! It’s the simple things. ❤ my heart is at peace. 

I still struggle with anxiety but this time, I’m learning how to cope. I try to listen to my body when it needs to rest.. most of the time! 

I removed a major cause of stress and anxiety from my life and I request your prayers/Duas with this as it’s the hardest thing I’ve ever done. I realised I needed to do something when I felt suffocated, drowning in darkness and on the verge of another breakdown. I didn’t think I’d survive this one. I couldn’t go back to the darkness I was in last year. The very thought was terrifying. That’s when self-preservation kicked in and I decided to do what was needed. 

Rosie is also doing well. She’s farting, whistling, gurgling and popping her way through life. 

And the most exciting bit.. I’m a Patient Advocate for Convatec! This involves speaking at patient events, giving my views on ostomy products, raising awareness and above all, working with the most fantastic team of superheroes! Take a look here and view their inspiring stories.. I’ll post more about that soon. 

Oh, I’m still reading and trying to get everyone else to read! What have you all been up to? What are you reading at the moment? Please leave a comment below and let me know! I feel I’ve been hiding from the world and it’s time to come back. If you sent any messages and emails, I’m sorry I didn’t reply. My head has been a mess and I’m just starting to tentatively engage with the world. 
Be nice, spread peace and eat cake,

The Gutless Ninja

P.S. if you could please raise awareness of IBD this week, that’d be fab. Please like my Facebook page (I’m not really active on other platforms at the moment) where I’ve shared lots of information. If it helps even ONE person then it’s worth it. ❤️

On a journey.. 

Assalamualaykum/morning, all! 

How are you all? It’s been such a long time since I’ve interacted with everyone, I’ve missed that. I hope you’ve all been well and are as happy and healthy as can be. 

I’m at an interesting phase in my life right now.. Not quite sure where I’m headed but determined to enjoy the journey! 

It’s been a rocky few weeks. My beloved grandfather passed away recently and the grief is still raw. Please remember him in your prayers. He really was a special person. He was like a father to me and we all feel his loss. 

And then my father suffered a heart attack. It was rather unexpected – he’d been having  trouble for a while but in typical bloke style, decided it was nothing and he’d be all macho. We’ve since found out that he has coronary heart disease – and he’s since decided that he’s very young and fit and of COURSE he doesn’t have to take precautions! I’ve informed him that any more of his solo shopping excursions (he’s not supposed to do any heavy lifting) will result in me calling round to all his usual shops and sharing his picture with strict instructions to call us if they see him. I’m a great daughter, aren’t I?! 😀 he told the nurses not to tell me ANYTHING about his health (even though I put myself down as his next of kin..) as I’m an ‘interfering busybody’. Got to laugh, right? I know how hospitals work and I’m determined to help him regain his health inshaAllah. 

And now to my big news.. A couple of months ago, I met an amazing lady called Helen Bracey. She is quite honestly one of the most inspirational people I’ve ever met! Helen encouraged me to join her team of Advocate Superheroes, which I did. 

It’s absolutely brilliant! I’m now a Patient Advocate for Convatec. Check out this site for more info and to meet the rest of my fantastic team. Convatec have launched an innovative service called Me+ which aims to help and support those who’ve had Ostomy surgery. There’ll be of information, guidance, support and help available. I wish something like this had been around when I had had my surgery! 

So what does the life of an Advocate Superhero involve? Well, so far I’ve delivered a talk, been to Head Office where I met the rest of the team, got to see ostomy bags being made in the factory (this was SO COOL!), spoke to the brilliant scientists who come up with new ideas, and I’m currently on the train, on my way to another talk! It’s a beautiful day and I’m so grateful for this opportunity. I honestly did not think that I would be doing something so worthwhile. It’s wonderful meeting so many new people and hearing their stories. 

The nerves are settling in now, I’m about half an hour away from Kettering where the talk will take place! So in a short while I’ll be standing at the front of a room talking about myself. And poo. Yay! :p 

I’ve been thinking.. I’ve faced huge trials these few weeks. But Alhamdulillah I keep thinking that I got through the awful, awful times last year when my world was so dark and I felt as though I’d never be happy again. This was all with the help of the Almighty. Maybe, just maybe.. That was to prepare me for this. Having dealt with such raw grief, I know I can get through the pain of my grandfather’s death inshaAllah. Although this pain is more brutal, I do feel hopeful that it won’t knock me out of sync. Does that make sense? I tend to ramble quite a bit so forgive me if it doesn’t. 

Oh, I’ve saved the best news till last.. Alhamdulillah I CAN SEE!!! I was given a scleral lens for my left eye and it’s BRILLIANT. I’m ably to wear it for a couple of hours a day so I do still have my cane with me in case I need to remove the lens during that time. I also need my white cane in the evening. This is such brilliant progress, it’s given me a huge boost. 

I must stop writing here, the train is pulling into Kettering and I must gather my thoughts before the talk 🙂 

Take care everyone. 

3am Thoughts: Anxiety and stuff

Assalamualaykum/hello wonderful readers 🙂

(Here’s a link to the About Me page if you’re new to the blog.. It explains a bit about who I am and why I blog)

I have this urge to write. I’m not entirely sure that’s a good thing at 3am, when I usually make very bad decisions. But this blog has been an outlet for so long and I need to get all this off my chest so this is as good a place as any.I haven’t planned this post so do forgive me for the jumbled paragraphs. I’m sure it all sounds better in my head!

I’ve been taking Sertraline for a couple of months. It’s an antidepressant and anti-anxiety drug. Also works for PTSD. I’d tried two other pills before but they gave me horrible side effects. This one is working much better Alhamdulillah. For ages, I was pretty embarrassed about this, avoided starting the medication because of the associated stigma. Then I took the plunge and actually started feeling so much better after a couple of weeks.

So how has it been? I’m mostly used to it now so I don’t notice any bad effects. At first, I was terribly drowsy and my jaw felt tightly clenched. I’m glad that’s eased, it wasn’t painful but it was really uncomfortable!
There was the usual (and probably expected) input from my family when I started these pills. They’re not seen as a good thing. Mental health isn’t widely understood. But now I think they’re coming around to the fact that the medication actually helped quite a lot. The bad dreams stopped. The panic attacks lessened. I was able to go out again.

So.. I was supposed to see my doctor in December to have the dose upped. Only I thought I was perfectly fine and there was no need. I’m smart like that. Clearly, I don’t learn. Here I am again, scared to sleep because I know I’ll have the awful nightmares. The worst thing is that the nightmares seem so real. All involving places I know well. I often wake up shaking and in tears.

And the anxiety has made a grand comeback. Yay. More panic attacks, sudden bouts of tears, feeling terrified.. It’s about as fun as it sounds. Currently, it feels like my heart is being squeezed. It’s not easy to breathe. But I’ve got to keep going, right? Because that’s what courage is.

I’m going to call my doctor on Monday and see what needs to be done. They’ll probably up the meds and offer counselling.. I’m not sure I want to go for that. It sounds like it might be helpful however my anxiety is pretty bad so I’d really struggle to talk to a stranger. The thought of it makes me feel sick with dread.

I’m listening to Qur’an everyday, focusing on the words and the meaning. I’m so blessed to be able to understand Alhamdulillah. It’s helping but this test is pretty difficult. I’m still struggling. It’s kind of hard to explain.. I know that I can’t control the way I feel (boy, that took me AGES to understand and accept!) so I try not to feel guilty. However, there’s this little voice telling me that I’m a terrible person because I really ought to be feeling better by now. There must be something really wrong with me if I’m not which quite obviously means that it’s my fault.
Confused? So am I. (Thought I’d list the weirdness in my head so I’m not the only confused one. 😀 I jest…)

On that note, I’m reminded about a conversation I had the other day. When someone is going through any form of mental illness, others will give them Duas/Surahs to read, tell them to pray harder. Which is a good thing. What gets me, however, is when it’s generally assumed that the person struggling with mental health issues must be very low in Imaan (faith). This isn’t always the case so PLEASE word your advice carefully.

If a person is still calling out to the Almighty whilst they’re in the depths of sadness and despair, when they feel hope slipping away, when they know that none besides Him can save them.. That is a beautiful thing. It shows strength and courage.

Telling someone who’s already struggling with a serious mental health issue that they just need to pray harder or do more can be highly detrimental.. It may even put them off completely. The best thing to do? Listen. Be there for them. Tell them you’ll make dua (prayer) for them. Ask how they’re feeling. In general, be supportive.
I keep reminding myself: ‘This too shall pass.’ Tests aren’t forever. There’s a reason for all of this even if I can’t see it right now. I posted this on the Facebook page earlier, I think it’s a beautiful Hadith.

SubhanAllah. I pray that Allah forgives my shortcomings.

This is really quite therapeutic.. I do feel slightly better after writing everything down. If anyone reading this is going through any hardship, please know you’re not alone. It may get worse before it gets better but you can and will get through it inshaAllah ❤

One final thing.. I’ve had a brilliant few days alhamdulillah for which I’m truly grateful. I managed to be productive and get things done. Reconnected with a few friends. Felt utterly calm. Honestly, it feels great! It had been a while. Each good day feels all the more beautiful because I know I need to cherish it. InshaAllah I’m hoping that once I get some sleep, it’ll be another fantastic day.

That’s it from me. If you want to keep up with my blog posts, pop your email into the ‘subscribe’ box on the right.

Oh and please forgive the typos (of which there’ll be many), I’m absolutely shattered and if I go back to edit now I won’t post this at all! Take care everyone. Have a great weekend 🙂

It’s been a while… 

Assalamualaykum/hello readers! 
It’s high time this blog was resurrected from the murky backwaters of the Internet and given a new lease of life.. I know, I know. Many of you have asked when the next post will be up and if slacking was an Olympic sport, I would’ve achieved Gold long ago. 
If truth be told, my mental and physical health hasn’t been great. Then there were other issues to deal with which left me stressed, shattered and er.. In hospital. Despite me telling myself that I was going to be as chilled as can be and not let anything worry me! The best laid plans and all that.. 

(Btw, if you’re new to the blog, please check out About Me here 🙂 thanks) 

But moving on.. I’ve had some wonderful opportunities come my way in these few months. All will be revealed soon! 

I’d like to draw a line under the negative events of the past few months and make a new start here. So. *deep breath* 

Here are some of the things I’ve been up to:

I’ve had an article published in Al-Mumin magazine! The lovely people at Al-Mumin even published a few pertinent and important questions and answers about living with an Ostomy. This is HUGE. I’ve been trying so hard to raise more awareness in the Muslim community, trying to show that ostomies are normal and us Ostomates are pretty awesome! It’s been a slow journey and to have this published is pretty incredible as the magazine has a reach of thousands, all over the world. Feeling slightly overwhelmed here. I feel it’s gone a long way to removing the stigma associated with have an ostomy. Of course, there’s still work to do but this is an important step. 

Secondly, I was contacted by the wonderful colorectal nurses at City Hospital, Birmingham. They were arranging a Stoma Care event at West Bromwich Albion football club and wanted little old moi to do a talk. I’ll admit I was shocked (in a good way!) and VERY excited! It went really well. I was buzzing from the high it gave me. Not being able to see the audience did kind of help though 😉 

I met the lovely Helen from Convatec after the event and we had a chat.. But I’m not going to say too much about that at the moment! Suffice to say that the future is looking VERY exciting inshaAllah. 
Of course, it isn’t all sunshine and roses. I still struggle with anxiety, horrible thoughts, struggle to meet people and even text my friends but I’m aiming to work on that inshaAllah. Please remember me in your Duas. 
That’s actually one of the reasons I haven’t blogged in so long – my brain feels as though it’s been sleeping. I’m not sure if that’s a side effect of the pills I’m on. Whatever it is, the fog seems to be lifting Alhamdulillah and I feel ready to start setting some goals. Probably not resolutions as they’re hardly ever kept! 

Rosie, my beautiful ileostomy, is quite well. Trumping away merrily as usual. Changing my bag has become a bit of a struggle as my eyesight weakens further. However, it won’t beat me inshaAllah! I’m determined to do things for myself for as long as I can. 

On that note, my mobility training has been going exceptionally well Alhamdulillah! I’ve passed indoor training with flying colours (different cane techniques, going up and down the stairs, entering a room, locating door handles etc) and we’ve progressed to outdoor training. In fact, we took a trip into town a couple of days before Christmas and I was super confident! I seem to have lost some of that confidence what with being unwell and not going out recently but I’m sure I’ll be back to where I was soon inshaAlllah. Of course, it helps that I have the best mobility training officer who treated us to a lovely coffee the last time we went out. My next appointment is booked for next week and I’m really looking forward to it. It feels so good to be able to confidently navigate my way through the city alhamdulillah. 

I’ve had to resort to asking my mum to wash my hair again as the fatigue has been terrible. This time round, I’m grateful that I have such a wonderful mother and I don’t want to dwell on how useless it can make me feel. InshaAllah I can build some strength up soon. 

I haven’t written much about how I feel emotionally but that’s because the inside of my head feels like a mess. It’s very foggy in there. I’ve been listening to more Qur’an lately and that’s helped Alhamdulillah. InshaAllah the next blog will make more sense! 

Do let me know what you think in the comments below and as always, pop over to Facebook for more frequent updates! I’ve really missed interacting with you all. A huge thank you to everyone who messaged and emailed to check how I’m doing, it means a lot. ❤ 

Finding My Way – Part One

Assalamualaykum/hello readers! In this new series titled ‘Finding My Way’, I’ll be writing about my mobility training sessions in detail to give an idea of what it’s like for me, being visually impaired, to learn how to use a cane and acquire new skills. I hope you enjoy the series. I welcome all questions, comments and feedback so do get in touch once you’ve finished reading 🙂 

(If you’re new to the blog, please check out About Me here. Thanks.) 

10:00 am 
I’m sitting here waiting for Michelle (The mobility training officer) to arrive. She’s just called a while ago to say that she’s running a bit late. I’m scared to feel this much anticipation but can you blame me?! It’s been so long since I was put on the waiting list to receive mobility training! So there’s a mix of excitement, nerves, happiness and possibly a little trepidation. Things haven’t been going too well lately and I’ve had my hopes dashed before. But I’m reminding myself that I need to trust the Almighty – completely. 
On another note, I’ve actually felt quite positive for the first time in a while! I’ve tried so hard to find the positivity these few months but it just wasn’t coming. For the longest time, I couldn’t understand it. I’ve never struggled like this before. Then I realised that this is also a test and I must be patient. Even if I don’t yet understand. It made it a bit easier to bear. 
But alhamdulillah it returned yesterday morning! It felt FANTASTIC! My smile feels real again. The world seems like a much brighter place. 

Now onwards and upwards inshaAllah. I’m not silly.. I know that I’m going to have good days and bad days. But now that I’ve had a taste of a good day again, I’m going to savour the sweetness. 
11:08 am 

Well, I can say that that was a successful first session! Alhamdulillah. I met the lovely Michelle. We had a long chat about my level of vision at the moment. I described it using visual aids such as the ones I used in this blog post

We both think Alex Garant is a wonderful artist! Here’s some of her work: (To see more, please visit http://www.alexgarant.com

  
It’s incredible how accurately this represents keratoconus vision. Although I must say it’s been a few years since my vision was this good! 

Michelle explained that there’s no time limit on training – it takes as long as it takes, which is reassuring. We’ll be covering different cane techniques, how to travel safely on buses and generally be more independent. 
We then went out (after Michelle made lots of notes in her diary!) so my cane skills could be assessed. The   one I’m using at the moment is called a guide cane and has a pencil tip. 

 

A guide cane

 (image from http://www.rnib.org.uk
I did tell her that I’ve learnt my skills from YouTube – it’s not the recommended way but I’d been waiting a while so I thought I’d help myself out. Apparently I’ve done well although there’s room for improvement. That was to be expected lol!
We stopped after a few minutes and I was asked to describe what I could see in front of me. The answer – not much lol. I can see colours and I know there were some trees but it all faded out after about 5 metres and I had no idea there was a lamppost there. 

After walking two blocks, we stood on a quiet street and I was asked if I could work out which direction the cars are coming from and which way they’re going. That’s when all traffic died away. Lol we must’ve waited for ages! It did make it easier to hear the few cars that passed. I’m pleased to announce that my hearing passed muster! All present and correct. Which is great to know, of course. 😛
We got back to the house and made an appointment for the next session – tomorrow! I’ll be going to the low vision centre and will practice using a long cane. I’ll learn some new techniques which will go a long way towards helping me become more independent inshaAllah. 
Good things definitely come to those who wait 🙂 

I hope you enjoy reading this series and if you have any questions, please just ask! I can be reached through email at gutlessninja@hotmail.com and do follow me on Facebook and Instagram

Until next time! 

Witching Hour

‘What is witching hour?’ You may ask.. The answer can be found in Roald Dahl’s wonderful book, The BFG. (If you haven’t yet read it, what on earth are you waiting for?!)

Little Sophie is terrified. It’s the middle of the night. All the little children in the orphanage are sleeping. She knows there’s SOMETHING looming in the street outside.

In the words of Mr Dahl himself:

 

Witching Hour by Roald Dahl

 
I felt this description was quite apt. I know this feeling well.. I’m not sure what causes it. But I stay awake for hours at night feeling terrified. Every night. I can’t explain the fear. I cry because it’s so intense. A deep, dark, unsettling fear. I couldn’t tell you what it is exactly I’m scared of. I’m aware that this sounds silly. I’m an adult. I ought to be brave. But here I am, sitting in my room just past midnight, feeling terrified.

It wasn’t always like this. But in recent weeks, it’s been getting worse.

You’d think sleep would be a welcome respite. But the nightmares seem worse than the terror. Sometimes I’m fortunate enough to have a dreamless sleep. Other times I wake up in tears because the nightmares were so vivid, so real.. Sometimes I KNOW I’m dreaming yet I still can’t escape. It’s as strange as it sounds.

I’m told these are symptoms of PTSD (post-traumatic stress disorder) and I was shocked to discover that PTSD can affect those who’ve dealt with severe illness and/or surgeries. I suppose it makes sense in a way. The body isn’t going to be too thrilled about being cut up and having bits removed. Add the constant self-doubt, anxiety and depression (which seems part and parcel of IBD) to the mix and you’ve got yourself.. A very sorry situation.

Here’s some information about PTSD:

Post-traumatic stress disorder (PTSD) is an anxiety disorder caused by very stressful, frightening or distressing events.

Symptoms of PTSD: Avoidance and numbing

– Avoiding activities, places, thoughts, or feelings that remind you of the trauma

– Inability to remember important aspects of the trauma

– Loss of interest in activities and life in general

– Feeling detached from others and emotionally numb

– Sense of a limited future (you don’t expect to live a normal life span, get married, have a career)

Symptoms of PTSD: Increased anxiety and emotional arousal

– Difficulty falling or staying asleep

– Irritability or outbursts of anger

– Difficulty concentrating

– Hypervigilance (on constant “red alert”)

– Feeling jumpy and easily startled

Other common symptoms of post-traumatic stress disorder (PTSD)

– Guilt, shame, or self-blame

– Substance abuse

– Feelings of mistrust and betrayal

– Depression and hopelessness

– Suicidal thoughts and feelings

– Physical aches and pains

(Info taken from the NHS website and mind.org)

Doesn’t feel like a bunch of fun.

I’ve finally made an appointment with my doctor to see what’s happening about seeing the psych team.. I’m not sure I’m coping too well overall. I’m getting better at accepting everything but there’s still a long way to go. It’s going to be a long journey and I don’t even know if I’ll be able to handle it but I’m willing to try. That’s a huge step up from a few months ago when I couldn’t find any hope and the darkness was even more crushing. This time, I’m hopeful that I might one day feel better. InshaAllah (God-willing)…
Moving on..
I was quite adventurous a couple of days ago.. I decided to go for a sleepover at my cousin’s house. I think it went relatively well, all things considered!
There was the panic attack which came so unexpectedly as I was chatting to my cousins and we were laughing.. Suddenly I couldn’t breathe, felt dizzy and started crying. It was an awful thing for my nine year old cousin to witness and I wish I could have prevented her seeing it 😦 But it was meant to be. 

Later on, we had a very informative and interesting chat about the digestive system and she was simply AMAZED to discover that I no longer have a large intestine, rectum and anus! I explained how it works and she found it pretty cool. I love kids! She wants to decorate more of my bags so I’m guessing she isn’t freaked out lol – kids are MUCH better than adults.

I’m currently suffering from a book hangover. Booknerds will recognise this feeling. It is a feeling of desolation upon finishing a brilliant book, the confusion of flitting between two very different worlds – literary and reality. There’s only one cure – more reading. I recently invested in a Kindle and it’s supposed to be a lot easier on the eyes than reading on a tablet. I’m not sure how true that is for me as I hold my book/tablet around an inch away from my left eye. It’s impossible to see clearly with the right one no matter how close the book is. I’m scared the left one will go the same way but for now it’s serving its purpose! Such are the perils of being legally blind but I have much to be grateful for.. I may not be able to see further than a few inches and can’t recognise faces but I’m still able to do what I want without difficulty. Alhamdulillah (thank the Almighty).

I taught a class this week and I’m feeling so very thankful. I did have my face glued to the iPad most of the time however I explained everything clearly and that’s the important thing.
Rosie, my wonderful Stoma (the bit of my small intestine that’s sticking out of my tummy so I can poop!) is making some rather impatient noises so I think that means I’ve written enough.

I’ve delayed the posting of this entry by a couple of days as I was due to see someone at the GP’s surgery to ask about being referred again..
The appointment was quite nerve-wracking. Going through the usual questions of how I feel most days, whether I’m still interested in the things I used to enjoy, whether I have thoughts of harming myself, whether I feel like a burden on anyone. The nurse was understanding but they’re not all easy questions to answer.

The upshot of it is that I’ve been referred to the psych team again. And this time I’ll make sure I note down the CORRECT date. I’ve been given some happy pills to help me along and will come back in two weeks for a review.

How do I feel? I’m not sure. On the one hand, I’m glad I’ve plucked up the courage to make an appointment and get the ball rolling. But it’s taking all of my strength to keep fighting and I don’t know if things will get better. I have to believe that they will. I never thought this would be me.. Relying on pills to get me through each day, struggling to cope without them. I’m trying not to listen to the voice in my head which tells me it’s nothing and I’m just making a fuss. It can’t be nothing, right? I’d be able to make it go away if it was. Then again, I had a warped sense of looking at IBD. There’d be blood in the toilet, severe cramps if I even drank water and I couldn’t leave the house in case I had an accident but I was convinced it was nothing really and I wasn’t seriously ill. Of course, the people who claimed I was faking didn’t help at all. It started the self-doubt and it’s never really gone.

I’ve welcomed the moments when I feel numb, like now. I don’t feel happy or sad. Just empty. It’s a welcome break from the sadness. I’m present but then I’m not. A feeling of detachment.
I’ve had a couple of calls from people who need help but I’m not the best person to help them. How can I explain this? Some understand and give me the space I need. And some don’t. To them, I’m the teacher, the helper, the one who’s always there for others. They can’t understand that it’s changed and it takes all of my energy to get through each day. I’m taking a break from all that because I’m worried I’ll give the wrong advice, say the wrong thing and make things worse. My mind isn’t functioning normally so how can I possibly help others? I feel like a hypocrite.

Dua (prayer) has kept me going. Talking to the Almighty. Knowing that He is listening and we’re never tested more than we can bear. That there is a reason for this. After all.. If Allah has decided something, how can it be anything but good for me? He is my Creator and He never forsakes the ones who call unto Him.

 `Ubadah bin As-Samit (May Allah be pleased with him) said: The Messenger of Allah (PBUH) said, “Whenever a Muslim supplicates Allah, He accepts his supplication or averts any similar kind of trouble from him until he prays for something sinful or something that may break the ties of kinship.” Upon this someone of the Companions said: “Then we shall supplicate plenty.” The Messenger of Allah (PBUH) said, “Allah is more plentiful (in responding).”

[At-Tirmidhi]

Thank you to each and every one of you for reading, commenting, emailing and above all, praying for me.. It means a lot and your support has kept me going. Thank you for being on this journey with me.
I was nominated for Muslimah Bloggers ‘Most Inspirational Blogger Award’ and if you think I fit the bill, kindly click here to vote! There are a couple of days left. It’ll take a couple of seconds. I’d greatly appreciate it 🙂

If you want to stay updated, please subscribe to the blog using the ‘follow blog via email’ box on the right. 

Stay blessed!

Nominated for Most Inspirational Blog Award! 

 

Click on this image to vote!

 
Hello readers!

I’m so excited to announce that my blog was nominated for ‘Most Inspirational Blog 2015’ by the lovely ladies at Muslimah Bloggers. It’s such an honour. 

I’ve been blogging about my IBD journey for just over a year now and the response has been fantastic. I aim to show what it’s like to live with a chronic illness and how I’m dealing with the aftermath of undergoing two major surgeries in two years, dealing with having my large intestine removed and bottom sewn up. I’ve still got a long way to go but I’m hopeful that I’ll get there inshaAllah! (God-willing). 

Voting is now open so please pop over if you have a couple of seconds and vote for my blog (The Gutless Ninja) here: https://docs.google.com/forms/d/14_EijjRfK_nzDj8hPPufsxzk1yxa83cLJYpeWXIcMuI/viewform It would be greatly appreciated. 

Thank you in advance. 🙂 

Eid Antics And A Spectacular Mistake

Assalamualaykum/hello and a very belated Eid Mubarak to those who celebrated! 

If this is your first visit, please check out About Me here. 🙂 if you’ve been here before, you’ll know about my battle with Inflammatory Bowel Disease, having surgery to remove my large intestine and my most recent operation so please read on.. 
Well, the last few weeks have certainly been… Interesting. In the way that a feeling of impending doom just before exam results are released is interesting. 

Let’s start with Eid day. I’d known from the night before that I was going to struggle – anxiety was at an all-time high and I kept bursting into tears. Didn’t take a genius to work out that it was going to be a tough day. I’ve started to accept that bad days are going to be around. Let them do their thing. As long as I can enjoy the good times. 

The night before, I decided I still wanted to make Eid exciting for the little ones (cousins!) so we stayed up all night making sweet cones and goody bags. Went to bed at around 5am. 
Come Eid day, I was curled up in bed, crying, until the afternoon. I’d forced my mum to go to my grandparents house where everyone gathers on the day to eat and enjoy themselves. She’d wanted to stay home with me but that’s hardly fair. It took me from 9am to 6pm to talk myself into showering and leaving the house. Then I discovered that there was something wrong with the stitching on my Eid dress so it was unwearable lol. I hadn’t wanted to buy a new one but I got one to make my mum happy. She deserves that, and so much more. 

So I decided to go in my favourite but not very new clothes. I did wear a sparkly pin on my scarf as it was a special occasion! I was feeling awful. Completely numb with bouts of deep sadness and in a lot of pain. As well as fatigue. A tiredness that’s seeped into my bones and every movement is exhausting. 

If someone spoke to me, it went over my head. I was part of the conversation but also far away.. Nothing seemed to register. I tried to put a happy face on but I think I just looked weird. I can’t do the fake smiling thing anymore. My face feels so odd. It refuses to obey. 

I got to my Gran’s at around 6pm. Everyone had eaten and they were all waiting for me. Received a great welcome from all the kids! A huge squishy hug from four little girls – squashy but I love them! They were very happy with their goody bags and sweets! 

I stayed for about half an hour and then disaster.. A huge anxiety attack. I should be used to them but I’m not. Each one affects me deeply. 

I started crying so I quickly walked out of the house and back home. I cried for hours. No one was home yet. I changed back into my pyjamas and went to bed. 

So that’s how I spent my Eid day. Not very exciting, huh?
Oh, and they didn’t leave me any cake. This is unforgivable. 

I’m trying not to feel guilty. I know it’s important to show gratitude. And happiness. Sometimes I just.. Can’t. 
I can’t stop crying. There’s a heart-wrenching pain that’s settled inside me and won’t leave. It bursts open when I’m not expecting it and I feel as though I can’t cope. I remind myself of all the good things. I just can’t bring myself to be ‘normal.’ Everything hurts inside. And my body hurts too. Every bone and muscle. The anxiety makes the pain so much worse. I probably sound moany but this blog is an honest account of what I go through, what it’s like to live with chronic illness which in turn affects one’s mental health. I won’t feel true to myself if I leave these bits out. 

The next day, I stayed in bed all afternoon… Again. I feel cocooned in bed. It’s Safe. If I venture out, there are people. And sounds. I don’t like either at the moment. My bed feels warm and comfortable and I don’t feel scared. 
My cousin sent me a text asking me to please come to her house as they were having a little party/get together. I was very hesitant.. But I knew I wanted to make the effort. 

I really couldn’t have asked for a better cousin. She’s the only one I can talk to about IBD, mental health issues, when I have a problem, when people have been awful.. I’m blessed to know her Alhamdulillah. (If you’re reading this, thank you and I love you very much 😀 ❤ ) 

I actually had a wonderful time! There was cake (nom nom!) and pizza. It was very relaxed which helped. I even dressed up and wore makeup! Lol that’s HUGE for me. Depression/PTSD kind of.. Eats away at me. I lose the will to do any ‘extras’ or do anything nice for myself. I don’t see the point and can’t make the effort. It’s all too much. But I did make the effort this time and I’m happy about that. 

Here’s the cake we had: (we started cutting it before I’d had a chance to take a picture lol!) 

  
A few days later, I went to visit more cousins and again, had a lovely time. I’m so grateful for the good days. There so rare. I’m going to keep the precious memories safe. 

Everyone came over to ours yesterday and it was great despite me being told that IBD is caused by junk food. (Yawn). Ok not yawning.. I was furious. Ranted about there being NO EVIDENCE for such a claim, that people in POOR COUNTRIES are now also being diagnosed, it’s usually GENETIC and I couldn’t tolerate salads and fruits at ALL when I still had my large intestine – some people can only tolerate processed food! Then I stormed off because I’m mature like that 😛 
Here’s a comment from the Gutless Ninja Instagram account:
  
I’m kinda calm now. It hurts to be told that I basically brought this upon myself and it’s my own fault. I suffered a LOT and indeed many of my mental health issues stem from being told by various people that I was faking my illness. I believed them after a while and wondered if it was all in my head. I still think that at times. I ask my closest friends multiple times if I’m just imagining it all. Whether the pain, fatigue, anxiety and sadness is even real. 

I stopped writing here which is quite tragic. I’ll post this then get onto the next update. 
I had good reason to stop writing – my wonderful friend came to stay with her two gorgeous girls and we had a fantastic (if very tiring!) few days catching up and exploring the city. I loved it. I did far too much but it was worth it! 
I’ve been doing a lot of reading since they left. It helps me forget and I’m not so sad when I read. I’m trying to be normal and do the things I’m supposed to but I find it so hard. 
Today, I spent a few hours reading in the tent in the garden. It’s my Reading Tent and I love it! 

  
I suppose I should talk about the Spectacular Mistake here. I’ve been trying not to think about it. It’s.. Painful. 
I’ve been waiting weeks to see a psychiatrist and clinical psychologist. I’m not ashamed of this, or embarrassed. It is what it is. I’ve been battling a major illness and have been through two major surgeries. Of course it’s going to have an effect on my brain. I’d been looking forward to the appointment for weeks because it’s so freakin hard battling with my mind all the time, having panic attacks, feeling scared, not being happy. I wanted to start feeling ok again. It’s nothing more than going to a specialist for a physical ailment.

I jotted down the date of the appointment, Thursday the 23rd. On Wednesday, I called the clinic to ask what time I’d be seen as I couldn’t find the letter. They had no record of any appointment. After a few very worried calls, I was told that my appointment was actually the day before and I’d missed it. Missed it. I’ve been understandably upset about it. And very angry at myself. I waited around 12 weeks for this and being told that they’d now discharged me because I didn’t make the appointment was a very tough and bitter pill to swallow. I never miss appointments. I’m not sure what’s happening at the moment.. My doctor was away last week so I’m calling her tomorrow to see what’ll happen. I’m not sure how I’ll bear the waiting game again, I don’t feel I can go through it all once more. It’s sapped my strength. But I must keep fighting. 
Mercifully, my friend arrived the next day and I didn’t have too much time to think about it – but I’ve now got time on my hands and I’m brilliant at worrying myself silly. 

It will get better inshaAllah. I have to keep hoping. I can’t afford to slide again. I shall hold on tightly to the rope of the Almighty. 
  
As always, do get in touch if you have comments, feedback or constructive criticism! Don’t forget to follow me on Facebook, Instagram and Twitter as I update those a lot more frequently than the blog! 

The Gutless Ninja was nominated for Most Inspiring Blog Award. Please see this post for more details on how to vote. Thank you! 

Taraweeh Reflections and Gratitude.. 

  
Assalamualaykum/hello readers!

I hope Ramadhan is going well if you’re taking part. If not, I hope you’ve been as well as can be 🙂 

I’ve had such a fantastic response to the article I shared in my last post. It’s made me realise just how many people feel left out because they’re unable to fast – yet they may actually be receiving MORE reward for their intentions and wanting to partake in this act of worship. We definitely need more material aimed at those who are being drawn closer to Allah through their trials. 

Last night, I attended Taraweeh prayer for the first time this Ramadhan. All I can say is SubhanAllah (Glory be to God). It was beyond incredible! One hour and 45 minutes of sweet, sweet recitation and standing in front of my Lord. Such a blessing and I’m feeling so grateful that I was given this chance. 

Unfortunately I thought I’d be a hero and not only pray half of the prayers standing up (it causes me pain at the best of times) but also to cause maximum discomfort to myself by not calling my brother who was in the men’s side and ask for a chair. We went quite late so the chairs were all taken. Ahh when will I learn?! As a result, I’m in a lot of pain today BUT it’s definitely worth it! I want to go again today but now I’m not so sure I’ll manage two days in a row! 

I made a decision to deliver a talk this Saturday. I miss the atmosphere at the Masjid, the sisterhood, the love. It’s what kept me going these few years and I feel awful that I just stopped my talks. I know I had to but even so. 

Good health is a blessing many of us don’t appreciate enough, myself included. It could always be so much worse. I think I have it bad sometimes, being partial sighted, missing half my insides and generally being sore.. But I’m (mostly!) sane Alhamdulillah. I can hear perfectly well. (Selective hearing is another issue 😉 ) I’ve managed to listen to live taraweeh from Makkah almost every day. Alhamdulillah. Quran soothes me. I have a very, very loving and supportive family. Everyone has their struggles. I’m grateful that I’m living in peace. For not having to worry about anything major. For being able to breathe without assistance. For being given knowledge. For being given a heart that works perfectly. For being so blessed. And for being given the ability to keep going, keep smiling and not give up. This is truly a blessing and I pray that it’s never taken away from me. 

Allah says:

” ….and if you [try to] count the blessings of Allah (God), never will you be able to count them.”

[Surah Ibrahim : 34]

How true is this?! 

(I stopped writing there. Continuing after two days…) 

I can’t believe it’s the 6th fast already. Soon the first 10 days will be up. Life is so fleeting.. 

I’ve been struggling with Tramadol withdrawal and heightened anxiety again. A doctor has decided I don’t need pain relief anymore. The less said about that, the better. I wish I wasn’t addicted to this drug but not being on it has made me realise how much pain it was blocking. Maybe Allah wants me to gain maximum reward this Ramadhan, hence the pain. The shakes, restless muscles and insomnia are harder to deal with. Sometimes I’m in so much pain it actually forces me to wake up when I’ve only just nodded off. Sheesh, I didn’t know I HAD so many bones and muscles in my body until they started hurting! But none of this is wasted as long as I believe in Allah and am patient inshaAllah. 

It’s reminded me again how I am nothing, absolutely nothing, without my Lord. We tend to think too big at times and that can lead to arrogance – when we have more faith in our God-given abilities than in God Himself. It’s an important lesson for me. And I’m grateful.. How can I not be, when Allah is reminding me to remove arrogance from my heart and rely only on Him? 

I attended Taraweeh two nights ago and my body still hasn’t quite recovered. I know I’m weak, and it’s hard to comes to terms with. Due to other reasons, I haven’t been able to go again but I’m still hopeful for reward.  

Rosie, my wonderful stoma, has been joining in with wishing the fasting ones well. Almost every day at Iftar when we sit down to eat, she decides to make her presence known by making rude noises. Loudly. So lovely and thoughtful of her. 

And lastly, this has been an unusual week for me in that I revealed who I was to a rather large number of people. My blog has always been anonymous apart from the very few close friends I’d told. I felt I could be more open that way but I decided to change that, be myself. If anything, it shows I’m really not ashamed of what’s happened to me. If you’re one of those people and you’re discovering a whole new side to me (I never usually go into detail about my illness) then I ask for your patience. This blog is honest. My thoughts aren’t always going to make you feel comfortable and enlightened. This is what chronic illness and pain does. There’s a stigma associated with invisible illnesses that I want to eradicate. We are human. No one can be strong 100% of the time. There are times when our faith is unshakeable. Then there are also times when we feel the earth has become constricted despite being so spacious, there is a darkness within us, the pain becomes unbearable so we cry, beg and plead with the Almighty to remove this affliction. Does it make us any less grateful? No. Because we’re turning to the One who created us, the only One who can remove this and trusting in Him completely. 

You see, chronic illness is different to having a flu or fever. With a flu, you feel absolutely rotten for a few days but you know you’ll get better. Chronic illness, however, stays around. It doesn’t go anywhere. It’s there in my bones when I wake up each morning and can’t move for the stiffness in my joints. It’s there when I’m so exhausted I can’t do a thing. It’s there when I have to turn down invitations and cancel plans because my body has a warped way of showing me who’s boss. 

I write these things so people realise how difficult it is to live with IBD. But despite it all, I’m grateful for the many, many blessings I DO have. If I could go back and change everything that’s happened in the last five years, I wouldn’t. My tests have strengthened me and made me the person I am. They have been a blessing from my Lord. 

Trusting in Allah

I do not expect your pity but I ask that you be kind and understanding. That is all. 

As always, please feel free to get in touch with me through email, Facebook and Instagram. I love hearing from you all! Details on the ‘Get In Touch’ page. If this is your first visit to my blog, do read my About page. Any questions, just ask! 

Stay happy. 

Please remember me and everyone else who’s facing difficulties in your prayers. 

Chronic Illness And Ramadhan: Coping Tips And Strategies 

  

The following article was published by Muslim Matters. I came across it last year and found it very helpful. I can’t fast with my health issues and will never be able to fast. This isn’t always easy to accept. But as I was reminded yesterday, the ultimate goal of Ramadan is to attain Taqwa (piety, nearness to God) and that can also be achieved through other means by those who are exempt from fasting. (Note: if you have a chronic illness or disability, please consult a Mufti regarding your situation) Of course I want to fast. But I also know that if I do, I’ll be in a lot of pain, have severe dehydration (I don’t have a large intestine, which absorbs water back into the body), suffer blockages and end up in hospital. So it really wouldn’t be wise. 

For those who aren’t familiar with Ramadan, I’ll briefly explain it below. 

Ramadan is the ninth month of the Islamic calendar and Muslims fast every day from dawn to sunset. That’s about 18 hours in the UK. No food, drink (even water) or marital relations during those hours. It is also expected to refrain from lying, swearing, anger, backbiting etc (which should be done anyway). The ultimate aim is to attain nearness to God. We also try to give as much as we can in charity. It is a time for spirituality and reflections, thinking of those who are less fortunate, bettering ourselves and helping our fellow human beings. Oh, and no one dies of starvation or thirst lol. Muslims have been fasting for centuries. 

I’m exempted from fasting as going without food or water would be very bad for my ileostomy and general health. Islam is a religion of ease. I pay a set amount of charity for each day that I miss, enough to feed a poor person every day. This is known as Fidyah. 


Chronic Illness and Ramadan

By Merium Khan 

I still remember the moment vividly: I was 13 years old, and at a Muslim youth camp. A fellow teenage camper was talking about Ramadan when her voice started to tremble. As she described her inability to fast due to medication, the tears started to flow and her voice dissolved in grief. It was so poignant, but being a young, healthy person, I couldn’t possibly truly understand that sense of loss she felt—until recently.

A few years ago at the age of 25 I was diagnosed with multiple sclerosis and found myself unable to fast.

During the first Ramadan that I could not fast due to the illness, I faced the stark reality: I would likely never fast again for the rest of my life. Long night prayers would be lost to me as well, as lack of sleep would exacerbate my symptoms just as surely as lack of food.

My mind flashed back to that fellow camper from years past, and I finally truly understood. Like her, I found moments when grief overwhelmed me, such as the time at a friend’s house when I hung my head, sobbing, until her 7 year old daughter patted my leg and said, “Khala, Allah understands…He understands.”

Since then, I have wished that somewhere buried in those “How to be a Super Muslim During Ramadan” articles and khutbahs, there were more useful Ramadan resources for Muslims with a chronic illness. We eventually just learn to stumble our way through the month, and after crossing off the things we can’t do, learn to figure out what we can do and how to survive the month without worsening our illness.

These are a few lessons I have learned these past few Ramadans as a young, non-fasting person:

  1. Ramadan Prep:

The weeks before Ramadan require extra rest. Don’t skip it; take it like a medicine otherwise you’ll have less energy when you need it in Ramadan.

  1. Conserve Energy:

Don’t use up all your energy in the beginning of the month. If you end up staying up too late, attending or hosting too many iftars, or otherwise overdoing the stress on your body in the first part of the month, forget about having the strength to do any ibaadah (worship) in the last ten nights (ask me how I know!).

  1. Pay Your Fidyah:

Have your fidyah arrangements planned out ahead of time and pay it promptly. Fidyah is the payment for missing the fast, and the details are beyond the scope of this article.

  1. Illness and Ramadan-Move Beyond Your Grief:

It’s okay to mourn what you have lost (ability to fast, to pray at night, etc.) but don’t let that be a trick to prevent you from doing what you actually are able to do. I realized that with a shock one year when, after playing pity party for the first week of the month, told myself, “Wait. You can’t pray qiyam, but you sure can pray your five prayers awesomely. Why aren’t you doing that at least?”

Reading and listening to extra Qur’an, making extra dhikr are also acts of ibadah that can benefit those who may not be attend taraweeh or qiyam.

  1. Consider priorities:

You may have to turn down some or all iftar invitations to preserve your health for prayers and worship. This is especially true in the summer months when iftar time is late. Don’t let cultural or social pressures cause you to compromise on your health, especially during such an important month of worship.

  1. Use Post-Iftar Time Wisely:

This is tricky but essential: when Isha is late, any taraweeh or qiyam can become a difficulty if not a near impossibility. This is particularly true for those whose illnesses will be exacerbated by lack of sleep and rest. Being able to restructure the time to get down to worship between Maghrib and Isha is going to be important during these summer months. I’ve found it difficult to apply this (especially as a wife/mother), because there’s such a rush between Maghrib and Isha and so much to get done.

  1. Watch How Much Time You Spend Eating:

One of the things I remember about fasting is how much more time there seems to be in the day when you’re not spending any on food and drink. So for those of us who cannot fast, we can reconsider how much time we choose to spend on eating during the Ramadan days. This doesn’t mean skipping meals, but perhaps minimizing meal prep times, or skipping the non-essential snacks and “comfort foods” that may take up time to prepare and eat but are not essential to our health (like a leisurely snack of tea and cake). This frees up valuable time for worship.

  1. Don’t be Shy to Get Help:

Your caregivers and friends are still there to help and support you, even when they are fasting. There is this tendency, since we are not fasting, to not ask others for help because they are fasting and we don’t want to burden them. This can lead to burnout and disease flare-ups, so we have to be open and ask for help when it’s needed even though we may feel bad about it. For those of us who have family responsibilities, it is important to be honest about our limits.

My husband will ask me in all honesty: “Can you do _________, or are you too tired?” and he trusts that I will be candid and not try to push myself to be the “Super-Wife.” This however has taken a lot of communication on my part, and understanding and compassion on his. It means that he has to eat a solitary suhoor, and sometimes even a solitary iftar on occasion if I am not feeling well. I have had to learn to put away my desire to do things perfectly, and allow him to help and support me in order to be well.

The Final Stretch:

All those beautiful and inspiring articles about how you’ve got to push your hardest, turn the last ten days into a sprint for the finish, and do what you’ve never done before? Lovely for the average folk, but it’s not going to apply to you if your illness is of the type that flares up due to lack of rest. Take the advice that will benefit and craft your own schedule. You’re not in Ramadan to aggravate your illness; rather you need to worship Allah in a way that recognizes that your body has a right over you. Always look for quality over quantity.

Ramadan conjures up so many feelings for those who deal with illness. There is the loss of the ritual worship (fasting, sometimes Qiyam), and even some of the usual habits and routines require change to accommodate life with an illness. It leaves a person with a sense of loss, and yet eventually we learn to create our own Ramadan routine that will allow us to participate in the month and yet stay healthy.

If your heart aches over the loss of fasting, remember this: the One who has ordained fasting has also ordained for you this illness as a test, so rejoice in the fact that there is mercy and wisdom behind his decrees. I take comfort in the fiqhi ruling that states that whenever fasting becomes harmful for a person, then in that case, fasting actually takes the ruling of haraam (forbidden). Therefore, by abstaining from fasting, I am preserving my health and, Allah willing, earning reward by avoiding this harm on my body. In the end, there is always some divine wisdom that we may never see:

And Allah knows, and you know not” (al-Baqarah: 216).

 Source

(End of article) 

I hope you’ve found this post beneficial. May Allah accept your Ibadah (worship) during this blessed month and may He grant you good health, happiness and blessings. Please remember me and my family in your Duas. 

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Strawberry Tarts and Exciting Opportunities.. 

Assalamualaykum/hello again readers,

Following on from the previous post, I thought I’d continue with the updates. The main one is something I’m really excited yet slightly nervous about. I’ll be speaking at the Pelican Healthcare Live Your Life Roadshow in Birmingham on the 13th of June inshaAllah! That’s less than 10 days away! I’ll be talking about Cultural Issues Around Living With A Stoma. I can’t wait, it’s such a fantastic opportunity! 

You can probably tell that I’m slightly giddy from the excess use of exclamation marks. I do apologise. Normal service shall be resumed shortly. 

I’ve also been interviewed by Muslimah Bloggers and I’m their Featured Blogger for this month! Do click the link and check it out! 

I’m feeling very grateful, I’ve just been blogging for a year (has it really been that long?!) and none of this would have happened if I hadn’t decided to start this blog with the encouragement my of my friends. And if it wasn’t for the support of you lovely readers, I very much doubt that I’d have kept up with it. I have a special skill in starting things and not finishing them :p I passed my 1-year Blogaversary a few days ago. Things are really looking up. 

So…

I’ve FINALLY received an appointment for my eyes. According to the eye hospital, I’ve missed three previous appointments. I just don’t see how this is possible as I didn’t receive any letters or text message reminders. I receive a text reminder for all my NHS appointments and I’ve never deleted any but these ones aren’t there. But I’ve finally received an appointment through for the end of this month. I’m feeling so hopeful.. I want to try scleral lenses. They’re a different type of lenses that are rather big but they’re supposed to be very comfortable and give great vision. It’s my last hope now. No doubt my doctor will suggest a corneal transplant again but I’m not ready for that yet! I know it would make the anxiety and PTSD a lot worse if I went through another surgery. 

I’m scared too, in case they don’t work for me. I remember how hopeful I was for surgery and I was devastated when they changed the date. I don’t want to go through that again. I keep reminding myself that it’s all in Allah’s hands and if I’m meant to see again with these lenses, I will. If not.. Well, I’ve become pretty nifty with the cane! 

On a much happier note, I ordered this lovely Ostobear from Stomawise and I can’t get over how cute she is! 

   

Bella’s ileostomy!


She has a stoma just like mine!  Yes, I AM a 26 year old who’s getting excited over a teddy bear lol! 
Now that the updates are out of the way, I can start writing about my day. 

I didn’t manage any sleep last night as I’d napped in the day but by 7AM I was feeling very determined to have a productive day. I haven’t had any of those recently, I just can’t seem to find the energy or motivation to do anything. I try so hard but I don’t get far. One of my favourite things to do used to be relaxing at my favourite coffee shop. I haven’t done that in a while. So I showered (using up a lot of energy!) and off I went. 

Well, I got there ok. Ordered myself a delicious mocha and strawberry tart. See these beauties? I reckon I deserved it! 

You can see my folded up cane in the lunch picture 🙂   

 

I couldn’t hold off the anxiety although I tried so hard 😦 for the most part, my hands were shaking. I relaxed a bit after about an hour or so when I ordered lunch but it came back. Being the stubborn idiot I am, I decided to stay on and fight it. I didn’t want to give in again. I still needed to go to Boots to pick up my medication so off I went. I’d been out of the house for a couple of hours by this point and I thought it was going pretty well, considering. I handed over my prescription and sat down to wait… And that’s when it happened. My heart started beating very fast and very loudly, my breathing was becoming shorter and I was having trouble remembering how do it properly. Yes, another panic attack smack in the middle of Boots. Yay me! I tried breathing deeply but it’s SO hard when my lungs don’t want to cooperate. They seem to forget their purpose. It took a few very scary minutes to calm myself down and I just wanted to be home. I know I should’ve called someone and asked for a lift home but I’m pretty stubborn and I was only 10 minutes away. Somehow, I managed to walk home. I’ve walked these streets hundreds of times but this was the scariest journey I’ve taken in my own area, where I was born and grew up. I’m still not sure how I got home. I remember almost stumbling a few times but Alhamdulillah I didn’t fall. I was so very thankful to see my lovely bedroom again. I’m never complaining about the creaky floor again! (At least, not for a while….) 
I was supposed to go to the mosque at 5PM but I’d fallen asleep so I missed that too. Feeling pretty rubbish that I can’t even go out without feeling extreme anxiety and having a panic attack. I know it’s not my fault and I can’t control it but it doesn’t ease the guilt. 

I also seem to have lost my usual writing style somewhere. I know I’m not as engaging, funny or interesting as usual but everything I’m going through seems to have have had something to do with that. I only ask that you forgive me and keep me in your prayers. Things really are starting to get better bit by bit alhamdulillah  so hopefully the blog can go back to being as inspiring as it once was! I try to be as honest as possible.  Even I’ve had bad days, I didn’t hide it. You all saw how I felt. I’ve shared all the good times too. Because this is what chronic illness is, even the strongest warriors struggle at times. 

Thank you for sticking with me ❤️ it means a lot to know that people care. 

As always, please feel free to get in touch through Facebook, Instagram or email. I love receiving feedback and constructive criticism! 

An Update…

Assalamualaykum/hello readers,

A huge, heartfelt THANK YOU to all of you who stayed with me these few weeks, that have been some of the darkest times of my life. Thank you to everyone who messaged, emailed, called, came to visit, thought of me and most importantly, prayed for me. It means such a lot to know that such wonderful people exist. Most of you have never met me but the amount of support has been astounding. Even more surprisingly, (for me, anyway) none of you told me I’m a bad person for feeling this way which is pretty much I’d been telling myself. I’m still working on that, it’ll take a while for the message to sink in completely. 
I thought I’d post an update on my situation. The last time I wrote, I was in intense pain, surrounded by darkness and couldn’t see a way out. I had absolutely no hope that I would get through this. Now, Alhamdulillah (thank God) things are slowly, very slowly, starting to look up. I won’t say that that feeling has passed as it hasn’t. But I’m learning to hope again. I’ve had a few days where I haven’t cried or had panic attacks. It’s still tough but it’s getting better Alhamdulillah. 

Truly, as Allah says in the Quran:

  
So I have a whole lotta updates for you all! I reckon I’ll go in date order and try to remember everything.  

A couple of days after my last blog, I saw a psychiatrist and went to see my doctor. Both on the same day. I was nervous, scared, apprehensive and dreading the visit to the doctor as I’d just registered with a new surgery and wasn’t sure how things would work out. 

Turns out I needn’t have worried. The doctor was absolutely lovely, she listened to everything I had to say and believed me. That’s a big thing for me. With invisible illnesses – and especially one such as IBD which is so complex, most doctors tend to use the textbook approach. Unfortunately, that doesn’t seem to work for me. So I was so relieved when I wasn’t dismissed outright. That should tell you something about the experiences I’ve had. 

I was prescribed Lorazepam, which is a fast-acting anti-anxiety medication. It was only for a week as it’s addictive and shouldn’t be taken for long. What a difference it made lol… Not only was I constantly drowsy, I seem to have suffered severe memory loss. I honestly couldn’t tell you what I’ve been up to that week or what I ate. I usually have pretty bad brain fog but this was something else entirely! But it definitely helped the anxiety. I’d say it cut the panic attacks down by about 98%. That’s pretty good. Before I started taking it, I was having a few panic attacks every day. Anything would set them off – shouting, a door slamming, being scared of something, the thought of leaving the house… It wasn’t a lot of fun. So Lorazepam definitely helped. I was pretty upset when the week was up as things went back to how they were.. The previous two posts should give you an indication of how bad that is. 

The meeting with the psychiatrist really shocked me. I thought I was pretty clever by not saying much but she had me sussed and knew exactly what I was thinking – and how I’ve been blaming myself for feeling like this. There’s too much guilt. That hasn’t gone away, it’s not something I can change easily but I’m hopeful I can work on that. 

I went back to the doctor yesterday and we had a chat.. It seems I have both Anxiety and Depression. And the two make each other worse. It makes sense. With the anxiety, I feel too much. It’s overwhelming. So much darkness. Sadness. Hopelessness. And with the depression, I feel nothing. So some days I’m feeling too much and want to scream in pain and other days I’m completely numb. I’m not happy, I’m not excited about anything, I don’t react to news of any sort. Just nothing. I don’t know which is worse. 

I’ve also been referred for PTSD treatment. That’s Post Traumatic Stress Disorder. This was a hard one to stomach. I’ve suspected that this is the problem for a while but I didn’t want to admit it. It’s something which soldiers returning from combat suffer from. People who have been abused. People who have suffered severe trauma. How could I have this?! Turns out it can also be caused by severe illness and/or medical trauma. 

This is the side of IBD that is rarely talked about and there isn’t nearly enough mental health support offered. Being diagnosed with a serious illness and being told that it’s for life has a severe impact. Having major surgery to remove the large bowel is a lot to deal with. Trying to decide whether to have surgery or put up with the constant pain and exhaustion is a huge decision and if things don’t go as planned, there’s a heck of a lot of guilt. IBD patients need to be offered counselling and mental health support as standard. Some places list depression as a symptom of IBD. Why then is this part of it largely ignored until things become very serious? 

I’ve been doing a lot of thinking and I think I know what’s happened here. I’ve been far too strong for too long. In the last five years, I’ve not only dealt with IBD and two major surgeries, I had a lot of personal and work-related problems in the midst of flares. I didn’t allow myself to be human.. I had to be strong. I forced myself to keep going, even when I was physically and mentally unable to. I was much, much stronger than I needed to be and it’s all come crashing down. I wouldn’t cry. I felt I had to be superhuman and not ‘weak’. This was my lot and I would deal with it no matter what. But it wasn’t the right way. It helps to talk, I should have done more of that. Of course there were times when I was scared, angry and frustrated. But I felt I was letting people down if I allowed the smile to slip from my face. I doing that, I caused more damage to myself. So it all built up and the breakdown was inevitable. The brain is complex. I can’t understand how it works. But this seems to be what’s happened with me. I could be completely wrong but it all makes a twisted sort of sense. I wish I’d seen that it’s okay not to be okay. That I needed to learn to say no sometimes, realise I needed to make decisions which wouldn’t harm my health , that I didn’t need to try so hard so others didn’t worry – I didn’t need that burden. But what’s done is done and now the only thing I’m focusing on is feeling better. I’ve cancelled my talks at the mosque and I’m learning to actually take care of myself and not be afraid to feel human. And I’m trying really hard not to feel like I’ve let everyone down. 

I’m probably going to stop writing here because I’m exhausted. So in conclusion, things are a bit better than before but I have a very long way to go.  For the first time in a while, I have hope that everything will work out ok. And that’s something I’m going to hold on to with everything I’ve got. 

I’ll have to continue this post later on this evening or tomorrow. Thank you for sticking with me and remembering me in your prayers/Duas. Knowing that so many of you are thinking of me, sending messages and praying for me continues to give me strength. 

I’m absolutely shattered but I had to finish writing this post. I apologise because I know it’s not my usual style. It’s not even half of what I wanted to say and I have some great news but it’ll have to wait for now! 

Take care all. 

Fight Like A Girl

I’ve written about fighting IBD so many times. That I’m not going to let it beat me. I refuse to let it get the better of me. I will continue to resist. I won’t be made to feel weak. And for almost five years. I did this rather brilliantly. My previous blog posts are full of incidents where I bounced back after feeling so ill. Every time. 

(Btw, if you’re new to my blog, please check out About Me here. Thanks.)

So what’s so different about this time?

Following on from the previous two posts, I’m not feeling any better. I’m still having panic attacks every day. I still can’t stop crying. I can’t do any of the things I used to enjoy. There’s a deep pain inside that doesn’t ease. A gut-wrenching pain (although my guts have already been wrenched so I suppose I’d better call it heart-wrenching instead) that seems almost unreal. I feel that if I was to scream, I would shatter everything around me with the pain and intensity of it. I feel empty. Emotionless. Completely numb. Nothing matters. I don’t understand how the world still carries on. I’m crumbling, and only a very tiny number of close friends believe me. Everyone else just sees how strong I’ve been and thinks I’ll be able to pick myself up again. 


Not this time. 

This is nothing like I’ve felt before. I’ve had depression for a while. It isn’t an easy thing to live with. This is so intense, so much worse. I’m locked in the dark chasms of my mind and there’s no way out.
But finally, finally, I’m starting to realise a few things. The tiniest chink of hope. Not enough to be seen. But it’s there. I’m going to hold onto it with everything I’ve got because I have nothing else. 

1) It doesn’t matter if I don’t understand why it’s happening. 

I didn’t cause this. I didn’t bring it upon myself by not praying enough or by being negative. I can’t talk myself out of it. I don’t understand why it’s happening… And that’s ok. Maybe I’m not supposed to understand. Maybe I’m meant to go through it to make me a better person. Maybe I’m meant to go thorough it to help others in the future. Whatever the reason, Allah (God) always has the best plan. I’ve finally stopped questioning why. I never questioned why I have IBD and I see now that this is also a test. I need to treat it the same. Just because it’s a mental illness doesn’t mean I have to understand why it’s happening. It isn’t any less real. 

2) Tests come in many forms. 

This is the most difficult test I’ve ever faced. It’s taken me a while to understand that simply because I can’t control the thoughts, it doesn’t make me ungrateful. Thinking back, I couldn’t control my colon. It was vicious, attacking itself until it nearly ruptured and I almost died. That didn’t make me ungrateful. This doesn’t either.  In this case, my mind is attacking. I have a name for what’s wrong but I’m not keen on sharing it yet. Yes, it’s serious. But there are ways to help and I pray and hope I get the right treatment. 

3) I really, really don’t like being told to think positive right now. 

Positive thinking is good. It helps us get through dark times. It’s been proven to make people feel better. I should know, I was always positive. Didn’t complain. But in this case, if it would have worked, that’s what I’d have been doing. When I say I can’t, I mean I actually can’t. So please don’t tell me to give myself a talking to. Or to just think positive. You may mean well. But think of how much it hurts me that this person isn’t even trying to believe me. 

4) I just want people to listen. 

That’s been the most important thing. Solutions haven’t helped me yet. I’m physically unable to do a lot of things. More tears, more pain every time I even think about trying. Panic attacks too. But I value and appreciate those who’ve believed me. I’ve been doubting myself a lot. I still do. But they’ve helped me feel.. Relief. I won’t say I feel better because that would be a lie. I think they understand that. But they believe me when I say I can’t go on anymore. That it’s all too much and I feel suffocated, drowning in my pain. On that note, don’t let this post fool you. Those feelings haven’t eased.
They don’t tell me I’ve dealt with more because it won’t help me now. When I have more hope, maybe it’ll help then. If this gets easier, maybe. It means everything to me right now to be believed because most don’t. I’m supposed to be the strong one. I’m not supposed to be feeling like this. But I am, and it’s very real. 

5) I’m still fighting. 

I realised this last night and it’s the reason I wrote this post. I’m fighting it. I’ve been posting about it a lot on Instagram. Writing out my thoughts. Some don’t agree, say I’m being negative and it doesn’t help. But every time I write, I’m trying. I’m trying so hard to fight it. I haven’t got far, but maybe it’ll start helping. I’ve been reaching out to people, hoping someone out there will offer a shred of wisdom and it’ll all make sense. I’ve been overwhelmed by the response on the blog, Facebook and Instagram. Thank you to each and every one of you who got in touch. I’m sorry I haven’t replied yet, I just haven’t felt up to it. But I will InshaAllah (God willing). 

I’m not giving in to the thoughts. Even writing and talking is fighting. This is the strongest I’ve ever been. And the weakest.

So Much Darkness..

I’m breaking tradition by blogging so soon after my last post but I thought I’d post an update. 

So things are a lot worse since my last post. So much worse. I didn’t think they could get this bad, but they have. My whole world feels closed, dark and suffocating. The darkness is pressing on me from all sides. I can’t breathe. I’ve spent the past few days in my bed, crying my eyes out. So much sadness, so much grief. The panic attacks are back. I don’t know where it’s all coming from, but the events of the past few days haven’t helped at all. I don’t want to go into too much detail but my heart is screaming in pain and feels as though it’s shattered into a million tiny pieces. So many awful things all happening at once. I don’t recognise myself any more. Who have I become? Who is this person who feels so weak, worthless and useless? I remember when I used to be strong, when nothing could faze me, when I felt as though I could take on the world. I was Superwoman. Not only was I strong, I was also inspiring others. My previous posts are testament to that.

(And just to make things better, a whole chunk of my writing just disappeared. Thank you, lovely iPad of mine. Now, where was I? Right.)

Just to give an idea of my day, I haven’t yet gotten out of bed. It’s past 10 o’clock in the evening. I haven’t eaten. I’ve just stayed in bed and sobbed. Not been out apart from the one time I had to empty my bag and get some water. I wish I knew what to do. I don’t know how much longer I can go on like this. I’ve been told I’m feeling sorry for myself but I don’t think that’s the case. Panic attacks don’t happen because people feel sorry for themselves. I can’t ‘get over it’ or ‘just think positive’. If I was just feeling sad, maybe. This is so much more, so much deeper. It’s scaring me. I just want to be alone.. Can’t even find pleasure in reading.

I don’t think I could’ve got through the past few days without my friends. The family situation is dismal at the moment – it doesn’t help. But a few of my friends have been incredible. They’ve been there for me and listened to me cry without trying to offer solutions because we know it’s not what I need right now. I just want someone to listen, and they’ve done that. I love them so much, I hope they all know how much they mean to me.

“If you know someone who’s depressed, please resolve never to ask them why. Depression isn’t a straightforward response to a bad situation; depression just is, like the weather.
Try to understand the blackness, lethargy, hopelessness, and loneliness they’re going through. Be there for them when they come through the other side. It’s hard to be a friend to someone who’s depressed, but it is one of the kindest, noblest, and best things you will ever do.”
― Stephen Fry

This is the thing. I’ve read tons of articles on how to be positive. Articles written by experts all telling me how to feel better in myself. But none of it works. My mind is holding me prisoner and it doesn’t want to let go. I can’t see beyond the next few minutes. Everything is too much. Yet nothing seems to matter.

—-

I wrote that yesterday. The family situation has mostly been resolved but I still don’t feel any better. I thought it would make things ok for now but no.. Still feeling the same.

I can honestly say that this is me at my worst. I will get stronger. I keep being told that. I don’t know what’s brought this on or even if there’s a reason but I’m going to ride this wave and hope that I’m stronger when it’s over. Because it has to end one day, right? I can’t see a way out at the moment but I know God always has the best plan. I have to trust in that.

It’s all had a huge negative effect on my health. My eyes are so sore from crying. I’m getting stomach cramps and my joints and muscles are aching. I feel like a mess. I want to stop hurting, I want to feel ok again. I want this to be over.

Thank you for reading. I’ve written more positive posts, I promise. Just check the archives and read a few of those if this is too depressing. 

I’d like to request your prayers please. My apologies to those who’ve emailed and I haven’t yet replied.. I haven’t been in any state to. Take care all.

Some Personal Reflections.. 

  

It’s been far too long since I updated the blog and I do apologise. I’ve started writing a couple of times but I thought it wasn’t up to my usual standards so I got rid of it. I regret that now, maybe I could’ve used those ideas but oh well, the time has gone.

I’ve been very hesitant to write about this issue because a few of you know me personally and I haven’t really spoken about it to many people. So I apologise in advance if you find this difficult reading. I hope you don’t think any less of me. My intention isn’t to moan, I need to write about everything in my head before I spontaneously combust. Or something. 

I’ve been struggling with my health recently and also trying to cope with feelings of despair, loneliness and depression. It’s something that I know I need to deal with but there doesn’t seem to be a way out at the moment. I’ve managed to have a few really good days, but they’re becoming fewer and further in between. I can pretend to be happy, really happy, and I even manage to convince those nearest and dearest to me but then the sadness always comes back. There’ve been days when I just sat in my room and cried. 

How can I describe it? How do I describe this feeling which courses through me every single day and I have no idea how to control it? The crushing despair, the loneliness, the deep sadness which never seems to go away? It’s like a dark cloud which is constantly hanging over my head.  Sometimes a few beams of sunshine come through for a while but once again they’re obliterated by this dark cloud. They call it depression and I’ve been told I need to speak to somebody, seek counselling, get some help. But it just doesn’t make sense to me. I have nothing to be upset about. I have so much to be grateful for. I’m surrounded by wonderful family and friends. My last surgery went really well. But for some reason none of this seems to be helping. I keep reminding myself of everything I have to be happy about but it just doesn’t seem to work. I simply can’t explain it. So what good would counselling do if I don’t even know why I’m so upset? What would I tell them? I don’t even want to talk to anyone. The thought of sitting in front of a stranger and trying to talk to them openly is quite frankly, terrifying. 

So I simply try to go about my day acting as though I’m perfectly normal. My head feels anything but. I’m quite good at acting by now. I can laugh, smile and joke along with the best of them. But deep inside I just feel numb. Completely numb. 

Actually, that isn’t strictly true… I don’t go about my day quite as normally as I used to. I haven’t been to my classes at the mosque in over three weeks. I can’t bring myself to. I haven’t been to visit my grandparents either. I know that I should, but I just don’t know how. It’s not as simple as simply walking out of the door and going where I need to. It seems so much more difficult and no one seems to understand. The panic that I feel when I even think about meeting with others or socialising.. It stops me from all of those things. It’s a bit easier now in that I can go out for walks on my own using my cane. But… I just don’t know. I feel really confused. And I feel I’m ungrateful. Because if I was truly grateful for all of Allah’s blessings, I wouldn’t be feeling this upset, would I? However, A small part of my common sense (which I seem to keep locked up) seems to be telling me that this isn’t true. That depression is a mental illness and just because it can’t be seen, doesn’t mean that it isn’t real. However, I’ve come across many people who claim that the cure for depression is praying it away. I’ve tried this many, many times. I ask Allah grant me relief and ease from this and I only seem to have reached the conclusion that this is another test. The way I’m feeling, the difficulties i’m facing, all of this is a test. It’s not something which I brought upon myself because I never questioned why I have been tested the way I have. I have never – and I hope I never – questioned Allah SWT about the difficulties I’ve faced. I’ve accepted it as my lot and I’ve always hoped for reward. I know it’s been really difficult. Just when things were looking up, I had trouble with my vision and I now use a white cane. It was tough adapting but I’m doing brilliantly (even if I do say so myself!). It’s given me independence and I don’t have to rely on others as much. So that’s not the reason either. 

And it’s so hard to avoid the self-hate.. I’m a teacher and people look up to me. I shouldn’t be feeling like this. I’ve broken down more times than I can remember in the past few weeks. The smallest things set me off. How can I even think about advising others when I’m feeling so rotten? I feel hypocritical. I think I just need to keep telling myself that this is also from Allah. He has a reason for my struggle, even if I can’t see it yet. Maybe it’ll help if I keep telling myself. Maybe. 

Another thing.. Being told I’ll be fine if I just got out more hasn’t helped either. I can have a brilliant time and forget for a few hours but it always comes back. I suppose the only people who understand are the ones who’ve been through it. I’m trying not to talk about it so much to my friends because surely it’s quite unfair on them?  People want to be able to help, to listen, offer a solution. And I can’t even explain any of this. I know they’d be understanding but I hate feeling like a burden. I don’t want them to be affected and feel upset by my state of mind. 

At least I have my reading. I’ve been crazy about it recently, taking out lots of books from the library, downloading on my iPad, reading every day. It helps me forget. I’m transported to other worlds, I’m living the lives of colourful characters and experiencing different cultures. It’s a beautiful kind of magic. I picked this little lot up from the library the other day: 

  

Thanks for reading through my ramblings. Do share my blog if you find it helpful. Please feel free to get in touch, I love receiving feedback and constructive criticism. You can email me at: gutlessninja@hotmail.com or get in touch through Facebook, Instagram and Twitter

Peace,

Gutless Ninja