On a journey..Β 

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?! πŸ˜€ 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 πŸ™‚ 

Take care everyone. 

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3am Thoughts: Anxiety and stuff

Assalamualaykum/hello wonderful readers πŸ™‚

(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. πŸ˜€ 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 πŸ™‚

It’s been a while…Β 

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 πŸ™‚ 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 πŸ˜‰ 

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 πŸ™‚ 

(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. πŸ˜›
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 πŸ™‚ 

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 β€œred 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 πŸ™‚

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!Β 

 

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. πŸ™‚ 

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. πŸ™‚ 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 πŸ˜€ ❀ ) 

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