My Stroke Story

17 Dec

So here goes, my stroke story and all the questions answered about what happened that day and the days that followed. The only time I’ve had to talk about it was with medical students, doctors, therapists and patients in rehab and then of course with my friends. The dates I didn’t know until my family had told me…

Late on July 31st 2017 I had a migraine and I decided to sleep it off with a nap. My then, 15 month old daughter should have been asleep by then, and I guess, I’m incredibly grateful she was still awake. Apparently my head was hurting so bad  I asked my eldest sister to deal with her (I was thankfully at  my parents’ home) because I didn’t have it in me. After waking up from my nap, I chilled and watched the food network ( I don’t remember this) and then took my daughter up to bed. Tucked her in and got myself ready for bed (at this point it was gone midnight and we were now on August 1st). I suddenly felt my migraine come back with a vengeance, it was showing no mercy and I just couldn’t cope. Something was wrong, I knew it. No migraine cool strip, painkiller or cup of tea was going to touch this pain. I knew I needed help. I went straight down to my parents’ bedroom and started banging on the door “Help me, help me!” I pleaded. They opened the door, I told them I had a really bad migraine and they had to call an ambulance immediately. They were both abruptly awoken from sleep and naturally moving slowly (it feels a lot slower when you feel like you’re dying of pain!) They lay me down on their bed (good move), the lights went on and I yelled something along the lines of “Why would you do that??!” I was clearly photosensitive by now. As I lay on the bed I kept telling my parents to call an ambulance and I was getting frustrated that it felt like things were going so slowly and my pain and symptoms were progressing too fast. My neck was stiff and my shoulders hurt, I felt like I was going to throw up, I lost patience with the pain and waiting for someone to call the ambulance. I grabbed the bedside phone and diallled 999 myself. “Ambulance!” I demanded and then gave my name and address (I think) I then handed the phone back to my Dad because I couldn’t speak anymore. Without much notice, out the vomit came, some in the bin and loads all over the bed and floor. I apologised for making a mess and felt a warm trickle of blood on the surface of my brain. I knew it was blood but nothing else clicked. and that was my last memory. My parents and family have filled me in on the unclear bits. Apparently I was muttering a prayer which my Mum could just about make out. It was the du’aa for forgiveness and one which all Muslims should recite every morning and evening. I also apparently asked my parents for forgiveness and then I passed out. My Dad had to follow the emergency service’s instructions to give me CPR (Go Dad! Super proud of you!!) I was only taking one breath for every six I should have been taking.  I can only think I must have thought I was dying but all I remember thinking was my baby girl is upstairs and someone should go to her (I was expecting her to come out the bedroom and follow me as she normally would if I left her) I also remember putting her into my bed in case she woke during the night and needed me. I figured if I was ill it would be made easier for me. My next memory was being asked by two physiotherapists to sit on the edge of the bed.

Now, I wasn’t alarmed waking up in hospital because I could hear things throughout and I was having some very bizarre dreams. By the time I reached this point I had three brain surgeries (including open brain surgery or a craniotomy). The  first procedure was on August 1st, a drain was inserted into my head to drain the blood from the cerebrofluid. Around this point I was put into a medically induced coma, intubated and all the rest of it. I was also unable to breathe independantly  due to a partially collapsed lung. I needed to be aspirated due to swallowing/choking on some vomit and it entering my lungs. I was in a coma for approximately 4/5 days and on life support before being slowly weaned off 100% oxygen. On August 8th, an embolisation was done but it failed (the weirdest thing about this was I knew because I heard the doctors say this and I relayed the message to my family (who were already informed by this point but couldn’t understand how I knew. I do remember writing “they screwed up” and that a doctor told me??) this procedure actually made me bleed more Finally, on August 9th I had the craniotomy just behind my left ear. The scar is huge but thankfully hidden by my hair! I didn’t know I had a stroke until my physiotherapist on the neurophysio ward told me. This was probably around August 20th – 25th I’m guessing. He didn’t sugar coat it either but then again I assume he thought I knew already. He just told me that the part of the brain where my stroke happened was responsible for movement and balance. Yes you science nerds have guessed it. It was on my cerebellum. I didn’t freak out hearing this because what I felt on my brain before passing out now made sense. My parents were naturally trying to protect me so down played it when I asked them. I say asked but I was actually writing everything at this point because I had a tracheostomy and thus had a tube coming out of my neck and I was hooked up to some oxygen this was finally removed on September 6th which was the day I could talk and eat again (I also had an ENT doctor or two examine me via my nose and neck using a fibre optic camera to try and figure out why I hadn’t been able to make any sounds since I was on ITU. My speech and language therapist discovered this and I eventually discoverd – by hearing the first ENT Dr who examined me, ask for a second opinion from the registrar because he thought my left vocal cords were paralysed – and they were. It turns out it was possible for me to speak because my right vocal cords were compensating. They told me about the AVM (arterivenous malformation) and how it was basically a tangle of veins and arteries on the surface of my brain which ruptured. I then asked for one of my sisters to come and explain it all to me. In fact, almost 5 months on and I’m still asking my family about what happened in the time that I was unconscious. It turns out AVMs are congential (you’re born with this rare condition) and it’s not hereditary (I asked how I can be sure my daughter doesn’t have it and if I could and should have her screened). For now, madam is doing just fine, thank God and I may give screening a thought when she’s older. My AVM was the primary issue which led to a secondary subarachnoid hemorrhage (the actual stroke). My sister also told me they found two other bleeds on my brain which didn’t surprise me and now I can talk I can explain why – I felt them a few days prior to the main event.

I should also admit that when I was finally with it, I thought a year and a half had gone by and genuinely thought I was 30 years old. I only figured out the date and year by reading the date on the cannulas put into my forearm.  After I was decanulated (trachy tube out and able to speak, breathe and eat on my own and also catheter and nasogastric tube out the next day), I was shafted to my local hospital for a week where I waited to go to a specialised rehabilitation unit. I was in rehab for 3 months from September 13 to December 11th. I was finally able to walk unaided on Friday 20th October and my wheelchair was officially taken away! Although I practised walking with a frame and walking stick in PT sessions, I skipped these two stages in reality, I also impressed my physio by stretching my quadricepts whilst standing, apparently it was like a rehab patient first for him. If you haven’t noticed, I’m approaching my 2 month walkiversary (it’s a thing since 2 seconds ago).

My remaining stroke symptoms:
-Left 4th nerve palsy/ diplopia – temporarily corrected using prisms on my glasses – likely i’ll need surgery soon
-Cognitive fatigue (I didn’t know it was a thing until my rehab physio told me after
I turned up to my session tired immediately after a psychotherapist session which consisted of loads of mental tests)
-I’ve started to lose bits of my short term memory over the last 3 weeks
-I’ve got chunks of my memory missing in the couple of weeeks leading up to the stroke
-Numbness all on my right side with pins and needles and tingling
-Loss of sensastion and temperatures on my whole right side
-numb tongue (was 100% but slowly getting better currently last 1/4 numbness left
-Loss of some motor ability in my left arm/hand
-I walk funny
-Sometimes my left leg joins in and does silly things
-Peripheral nerve pain since the end of August (right side)
-A tracheostomy site which is overgranulated and not healing as fast as it should
-Some loss of hearing in right ear

My hand is starting to hurt and I’m getting tired so I’m gonna leave it here for now. Thanks for reading and well done for surviving that long. The stroke is mostly why I’m aiming to be the paleo woman I was a few years ago. Being in a bed and immobile for most of the time, combined with foods can make a person… out of shape and I need the strength, energy and fitness to be able to look after my baby girl, bake and maybe go back to teaching. I can’t remember if I stated it on my previous blogs but I’m a cake baker and decorator, I launched my own home business back in October 2011 – before I went paleo. Here’s a cake I made for my therapists, doctors and nurses at my rehab unit 2  weeks before I was discharged:

rehab cake collage

In case you hadn’t guessed the name of my  business is Crumblicious Delights. I specialise in wedding cakes so I gave the cake a wedding theme and included my date of admission to discharge in rehab on the bottom tier in Roman numerals and the name of the unit on the top tier RNRU (Regional Neurological Rehabilitation Unit). I know I’m paleo and bake unpaleo things but they’re not usually for me and remember I started baking before I went paleo. I have just set up an instagram account specifically for this blog, litera;ly just now @paleostrokesurvivor and Twitter is back up @GFSalafi

All praise is due to God I’m not paralysed at all and I’m alive! God is good! ❤

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