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. 

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. ❤ 

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!

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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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.