3am Thoughts: Anxiety and stuff

Assalamualaykum/hello wonderful readers 🙂

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

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

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

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

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

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

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

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

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

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

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

SubhanAllah. I pray that Allah forgives my shortcomings.

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

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

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

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

It’s been a while… 

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

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

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

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

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

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

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

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

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

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

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

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

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

Fight Like A Girl

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

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

So what’s so different about this time?

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


Not this time. 

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

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

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

2) Tests come in many forms. 

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

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

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

4) I just want people to listen. 

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

5) I’m still fighting. 

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

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

So Much Darkness..

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

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

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

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

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

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

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

—-

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

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

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

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

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

It’s All About The Eyes…

IMG_2141

This isn’t one of my usual posts in that it won’t focus on IBD or my stoma but I thought it’s time I wrote something about what I’ve been going through these past few weeks and months. I’m all about raising awareness so here goes.

I haven’t really mentioned this before but one reason why posts are usually late is because I live in a weird world, flitting between near-perfect vision and times when I can’t see a thing and would be legally classed as blind if it wasn’t for the days when I CAN see well. Confused? So are most people who can’t understand why I didn’t recognise them when I walked into the room when I could see them perfectly fine the day before!

I was diagnosed with a condition called Keratoconus around 11 years ago, at the age of 14. My vision was steadily getting worse and I was getting new glasses every few months and even then, I wouldn’t be able to see properly. Everything was just so blurry!

So what is Keratoconus?

“The name literally means “conical or cone-shaped cornea” and rarely appears until puberty or older. In keratoconus the cornea becomes stretched and thins at its centre, and the thinned part of the cornea bulges making the vision more shortsighted and irregular. As a result the vision is distorted.”
Source

In other words, my eye is rather pointy instead of being round, when looking from the side. This affects the way light enters the eye. It goes in all directions, hitting parts it has no business hitting so my eyes are extra sensitive to light. It also distorts the vision.

2015/01/img_2142-0.jpg

There are some great pics over as well as info on this website which helps to explain everything.
Here are a few, my eyes were probably at this stage a few years ago. It’s a lot worse now.

 

2015/01/img_0008.jpg

IMG_0003

I attended boarding school at a time when I wasn’t at a great stage with my eyes. Glasses didn’t work for me (because of the shape of my cornea) and it took a while to be set up with new doctors and be referred to the hospital. Then it took a while to be referred to a contact lens specialist.
So there I was at school, unable to go out on my own at night, treading everywhere carefully in case I fell flat on my face and generally getting by. I’d be lying if I said it didn’t bother me. One memory sticks out.. Cleaning the dining room one day, I picked up a dustpan and went to empty it into what I thought was a black bin bag. Imagine my surprise when the ‘bin bag’ moved away just as I was about to tip the rubbish out! Seems I was about to tip it onto someone’s head – she was wearing all black and I really couldn’t tell the difference! It took a while for three of us to explain that it wasn’t a practical joke and I hadn’t intended to cover her with dust! Not all moments were humorous – I was abroad one year and didn’t see a small step, so I tripped and fell. I was in a lot of pain, couldn’t walk for a while and had to rest. Turns out I’d dislocated a couple of joints in each foot. Oops.

One day, sitting in class, I came across this Hadith and it touched me somewhere deep inside, the very words I needed to hear when things were so difficult. It still gives me comfort.

Narrated Anas bin Malik (RA): I heard Allah’s Messenger (PBUH) saying, “Allah said, ‘If I deprive my slave of his two beloved things (i.e. his eyes) and he remains patient, I will let him enter Paradise in compensation for them.

(Sahih Bukhari)

It had gotten to the point where I couldn’t see the writing in my books and it was impossible to write in a straight line or even see what was written so I was excused from reading/writing. I must say that the teachers were understanding but it did feel really odd sitting in class and not being able to do anything. Surprisingly, my memory became stronger and I did really well in my exams. Alhamdulillah 🙂

Finally, my appointment came through and I saw the lens specialist. He showed me the different types of lenses they do and said that RGP (rigid gas permeable) lenses would be my best bet. They’re small, hard lenses. We tried a few different ones to get the best fit. Once they were in, I could actually see the letters in front of me! My measurements were sent off to the lab so my custom lenses could be made.

Two weeks later, I was back in the opticians chair trying on my new lenses. It took some time and LOTS of practice and I was blinking VERY carefully but.. I could see! I could actually see. I was allowed to take them with me so back to school I went. And oh my goodness… I cannot describe the feelings of euphoria, excitement and happiness which rushed through my mind at that time! I could see every blade of grass. The leaves on the trees. Every brick making up the buildings! Birds in the skies! And I could actually read without holding the book about three inches away from my face! It was incredible. Absolutely incredible. A whole new world had opened up. I ran around, drunk with this new vision. Never mind that I was 17, not 7 lol. I received a few odd looks but most students and teachers knew my plight and were happy for me.
Soon I was wearing them every day until my condition started worsening gradually and I would have the fit altered every few months.
Waking up in a blurry, shadowy world and progressing to crisp, clear vision is a blessing I can never be grateful enough for. I am thankful every day for medical and scientific marvels like these.

I did used to think that Keratoconus was a big issue.. But then IBD came along and I pushed it to the back of my mind, it wasn’t a priority when I was exhausted beyond belief, dashing to the loo 20 times a day, passing blood, countless hospital visits, being poked and prodded with needles and eventually having my colon removed.

To add to the whole issue, ulcerative colitis also had an effect on my eyes.. They were usually sore, dry and sensitive and I was left unable to put my lenses in. More than once, I ended up at Eye A&E with yet another scratch on the surface of my cornea. The pain was excruciating! I’d spend the next few days lying down and keeping my eyes closed because blinking was just too painful. It felt like someone was scraping a white-hot needle across my eye every time I tried.

But now that it’s gotten a lot worse, it’s affecting me quite badly and all those old feelings of confusion, bewilderment, anxiety and frustration have surfaced. It’s amazing how I’d forgotten all that.

Last year, I wasn’t tolerating the hard lens anymore and they were making my eyes very sore. I could feel them scraping against my eye when I blinked. We decided to try something different, piggyback lenses. I started wearing a clear soft lens first to try and cushion my eye and then I’d wear the RGPs. It worked really well for months, I was getting the excellent vision of RGPs and the comfort of soft lenses. They’ve been fantastic, up until they weren’t much use anymore.
My eyes have been troubling me again for a few months now. I’m only able to put my lenses in once a week at most – and sometimes it’s only once a fortnight. I’ve been given some gadgets to help me cope and I’ve been told that there are courses for people who are partially sighted but I’m not really eligible as I’m not registered (as blind or partial sighted). And I’m not able to be registered – even though I can’t see a thing most of the time – because I CAN see sometimes. Never mind that I now spend most of my time at home because I’m too anxious to go out. Honestly, it’s like taking a wheelchair away from a mobility-impaired person and telling them they’re ok, at least they can see the wheelchair!

I’ve also been given a white guide cane which I still haven’t used – just agreeing to it was difficult enough. It felt like a huge step. I was finally admitting that my vision was so bad I needed a blind cane. I can’t really explain it. At any rate, the cane is rather useful for whacking unruly and annoying siblings about the shins while pretending they got in the way. Mwahahaha! (I should point out that my siblings are adults, there’s no child abuse here!)

There is another option which has been mentioned a few times. A corneal transplant. This is an operation to remove the damaged cornea (thin film at the front of the eye) and replace it with a healthy cornea from a donor. I’ve been thinking about it a lot and I’m just not ready for it yet. I’ve had two major surgeries in 18 months and my body still hasn’t recovered fully. I don’t think I’ll be able to take on another operation yet! There’s also the fact that it’s freaking me out. Strangely, the thought of eye surgery scares me more than the other surgeries I’ve had. Open me up and remove half my guts, no problem. Attempt to talk to me about eye surgery and I start to feel squeamish!

It’s been getting me down so I’ve been avoiding company. I’ve been told off a few times for not answering the phone and not replying to text messages. Well, I’m hibernating and I don’t want to talk to anyone, thank you.
I do try.. But it’s hard. I pick up my phone to text someone but it requires so much effort. Sigh. I just want to be. Is that too selfish?
I hope I can get past this stage inshaAllah. Everything seems to be weighing me down and I feel the way I did a few days after my op when I was heading towards a breakdown. Maybe it would be best to let things take their course and see what happens. I don’t know.

Once I hit rock bottom, the only way is up.

 

 

 

Saga of the Stitches..

Well, I’m glad THAT’S finally over. Out of all the things which could have gone wrong after the operation, I honestly didn’t think it would be this!

It’s been seven weeks since surgery.. Goodness. That’s a heck of a time. It doesn’t feel like seven weeks!

This whole saga started when someone made a mistake when writing my discharge letter at the hospital – they forgot to tell my GP to remove my stitches in 2 days. When I got home, I was worried about my wound. It wasn’t seeping as such but it was painful so I wanted it looked at. I referred myself to the District Nurses and they’d see me once a week. By Week Four, they decided to remove the stitches as it isn’t safe to leave them in for so long. That didn’t go too well… I had a panic attack after five stitches and we decided not to continue. It WAS awfully painful when the nurse was tugging them out after cutting, but I feel it was because my mind had connected it with previous trauma and decided nope, I’m not having any of this, thank you.

Firstly, there was the sigmoidoscopy when I still had my rectum. The sigmoid colon is the very last bit of colon that connects to the rectum. I’d already had my colon removed so there weren’t many inches of it left.

I was wheeled into the room and given gas and air or laughing gas. Once I was properly relaxed and giggling, the consulant started the sigmoidoscopy by inserting a scope up my butt. By ‘scope’, I mean a tube about the width of a finger with a light and video recorder at the end. It would be uncomfortable for anyone but with a rectum like mine that was spewing blood every few hours and also badly inflamed, it was excruciating. I decided to be strong and see it through but my resolve faltered when the consultant started taking biopsies. You see, the camera also has a lovely pincer attached which can tear off cells, called a ‘biopsy’. Don’t let the cute-sounding word fool you, I reckon even MPs would pull up their socks and do their job properly if faced with this threat. And everyone knows they’re the laziest, most eager money-grabbing gits around.

Back to the sigmoidoscopy… The camera had gone in about 7 inches when I asked her to stop. Actually, I started crying, forgot how to breathe and started gasping and choking, trying to say ‘stop!’. They got the hint and stopped there and then and I was quickly given more oxygen. I know they were trying to talk to me but my mind had gone blank. Completely and utterly blank, I didn’t have the ability or energy to talk.

Around 15 minutes later, my breathing slowed and I became aware of what was going on around me. It was a hugely traumatising experience, one I’m not keen to repeat. Actually come to think of it, it’s not one I CAN repeat, given the sewn up barbie butt 😀

The second time I felt this way was when I had the drain removed after surgery. It was inserted into the cavity where my colon/rectum used to be. I was fine during stitch removal but when the drain itself was pulled out, it felt as though the suction was pulling my insides out along with it! I start panicking and couldn’t breathe, my mind went blank and I felt as though I was going to faint. The nurse was very comforting but it was a while until I was back to normal. A doctor came in and started chatting to me about going home the next day. I just stared at him. It was quite strange, I could hear the words and I even knew what they meant but they weren’t connecting and I seemed to have lost the ability to speak. Cue both of them holding my hands and telling me I’d be ok.

So this time, when it came to the stitches, I started having the same experience. The nurse left after telling me to call the hospital the same day. But me being a scaredy-cat, I kept putting it off. I have a deep-rooted belief that if I ignore a problem, it’ll go away. It’s never worked in the past but it doesn’t stop me from trying it every time! It’s pretty silly but I’m not quite ready to give it up yet. I call it the Ostrich Approach.

Finally, I plucked up the courage to call my surgeon’s secretary this Monday, two weeks after I had the first five stitches removed. She promised to pass on the message ASAP. I had a call from one of the surgeons later that day but I was sleeping. I suppose I should have returned it..

On Wednesday, the secretary called again and told me to come into the emergency surgery ward that day. This time, they managed to remove two stitches before my breathing became very ragged and shallow. Being told that I’d faint if I didn’t take deep breaths and relax had no effect. Not to mention that I tensed up every time they wanted to take a look. They suggested I come back the next day at 6AM to have the remaining four removed under general anaesthetic. Oh boy. Needless to say, I wasn’t too happy with myself and hated that I was causing such a fuss. I would have carried on beating myself up over it if it wasn’t for my fantastic friends. I’m truly blessed to know them, Alhamdulillah.

So I was at the Short Stay Unit bright and early yesterday, feeling quite hungry because I was nil by mouth from midnight. They took me through to theatre at around 8:45 am. I told the nurse I was looking forward to a nice hot lunch later. She laughed and told me the Short Stay Unit didn’t do hot lunches, just sandwiches. Pants. On the upside, I was given those ultra cool dark blue hospital stockings and a gown 😛 I DID tell the theatre doc that I have terrible veins and could he please put me to sleep using the gas before sticking a needle in me, but was that enough? Nope, he had to try at least once. It wasn’t successful so he used the gas to knock me out before attempting to put another needle in.. I counted 5 attempts in total, when I came round at midday. Three of them in my right wrist. OUCH. That’s one of the worst places for me! It was agony as I still had the cannula in me but they told me they couldn’t take it out until I was discharged in a few hours. Pants 😦 I woke up at around 2pm to see my dad sitting there. I might have asked him to leave me to sleep as I was very comfortable! In my defence, I was really groggy from the anaesthetic. Both sides of my inside top lip are really sore and feel cut. I’m told they used a tube so I could breathe. Never had that one before. I was discharged around 4pm, came home and slept some more. That’s why I’m lying in bed writing this at 05:30am!

But the best thing is that the stitches are FINALLY all out. Alhamdulillah. I don’t have to feel sharpish bits of plasticky wire every time I go for a wee. I can move on and start to heal properly InshaAllah. I’m not angry or upset with the person who made a mistake, I’m just glad things are now sorted. We’re human and we make mistakes. I’m sure it wasn’t deliberate. Nothing happens without the Will of Allah and everything He decides for us has a reason. He doesn’t let the pain of a believer go to waste. I’m hopeful that He’ll reward those who went through difficulty and remained patient. I’ve mentioned before that patience isn’t about being happy all the time, it’s about going through difficulty, realising it’s from Allah and having faith in Him, beseeching Him to deliver us from this difficulty.

Sorry if this post is rather boring, my mind isn’t back to its usual self yet! When I wrote the last post, I was having serious withdrawal from Tramadol, suffering from PMS and had sleep deprivation so standards can only improve from here!

JazakAllah Khair and thank you to everyone who made dua for me and thought of me 🙂 And a massive thank you to my wonderful friends who are simply awesome. You know who you are ❤ I couldn’t have gone through this without you. Love you lots, even more than chocolate, books and lollipops.

Infliximab hangover and thoughts on patience…

I’ve come to expect this on the 2nd day of infusions but it doesn’t make it any easier!
It’s 4 PM already and this is how my day’s been so far:

7 AM: ignore alarm. Back to sleep.
10 AM: hear alarm. Start to drift back into the land of nod… Remember that I need breakfast. Wash my face. Zombie walk downstairs. Eat a banana. Eat a pear. Drink water. Pick up another pear in case I feel hungry later on and don’t have the energy to come downstairs. Zombie walk upstairs. Growl at anyone who dares speak to me. Back to bed. Sleep.
2.00 PM: wake up. Wonder if I should bother getting out of bed. Still feeling shattered. Feeling hungry. Get out of bed. Wash. Contact lenses in. Tell myself I’m now ready for the day ahead! Discover some mushrooms in the fridge which need using up. Search for recipe using said mushrooms. Find 25 suitable recipes. Read each one. Go back to the first one I saw. Cook food. Eat. Tell family to help themselves. Back to my bedroom.

Did I mention that I’ll regret exercising yesterday? Well, I do. I’m amazed at my own stupidity sometimes.

But on a MUCH more positive note, an achey, hurty body = expiation of sins and a means of great reward. Alhamdulillah! Who wouldn’t be pleased with that?
As Muslims we believe that everything happens for a reason, even if we can’t see it at the time. An illness or disability is not a ‘punishment’, rather it’s a means of great reward. Allah constantly reminds us: ‘surely, Allah is with the patient ones.’ It is a way of drawing closer to our Creator, focusing on Him and recognising the many blessings He has favoured us with while realising our own limited capability as human beings. Truly, everything happens according to the Will of Allah. If one of our organs were to fail, who has the power to make it work again, besides Allah? If Allah decides Khair (good) for someone, no one can take it away.
All medicines have stopped working for me, my eye consultants are asking me to go on the list for a corneal transplant (which I keep putting off – one thing at a time!) but I know that this is part of Allah’s plan… Therefore it’s for the best. There is a reason, though I may not be able to see it yet. This is patience. Patience doesn’t mean that we stop feeling, stop seeing, stop being human and grin at everything we see. It means we trust in Allah despite the pain, despite the difficulties. We don’t lose hope in Him.

Alongside knowing that Allah has power over everything, we don’t stop praying or asking for a cure. And we truly believe that the cure WILL be found one day as we find in the Ahadith:
Narrated Abu Hurairah (radi Allahu anhu) that the Prophet (sal Allahu alaihi wa sallam) said: “There is no disease that Allah has sent down except that He also has sent down its treatment.” (Sahih Bukhari)

There were many illnesses which seemed ‘incurable’ at certain points in history. Science is always advancing, new research is being done and each step takes us closer to a cure. Yet we also know that medicines and cures can only work with Allah’s permission.

This is hope. Where would we be without it?