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! 

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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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