June Lockdown Update

It’s been sometime since I updated my blog, over two years if I’m not mistaken.

Just thought I’d give a small update. If you see this, drop me a comment and let me know you guys are still around.

So, my recovery has quite frankly, been astounding Allaahumma baarik aameen. Over time I have had some very small changes such as regaining some sensation in various parts of my body (we’re talking about the size of a 5p coin) at a time and I’ve noticed these changes may not even be permanent in most cases, however, it certainly gives one hope that healing is continuously taking place. A lot of the time I choose to not share my small victories as I don’y want to get my hopes up and then be let down. Alhamdulillaah that’s not the case as I actually have my emotions under control and can remain moderate in most, if not all things.

So since 2018, I came to terms with the fact that I may ot actually be physically nor mentally able to home school my daughter which was always my dream. It took me the entire Ramadhaan that year to silently and privately come to terms with that decision. I later that year put her into nursery part time which was great for her social skills as I realised she was much like me since leaving hospital and didn’t like socialising much. In October 2019 I was given back my driver’s licence which gave me the freedom to leave my house independently. I started with very short local journeys of up to 5 minutes. I couldn’t fully be independent as car parks were somewhat an issue as a non-disabled person. Having to park a short distance from where I was going with a distracted 3 year old and often in weather conditions and temperatures that didn’t suit my body was a mission. Thankfully, I was soon given a blue badge which made my life incredibly easy. As much as I never wanted to be labeled disabled it has been an incredible blessing and it is a label I am fully proud of. I’m pleased to be able to represent the disabled community and being from a BAME background I’m in a position to dispell misconceptions and presumptions where possible. In January this year, I got my first permanent part-time job since falling ill and being on maternity leave. This has meant I am able to fund my healthy lifestyle once again and at the start of Ramadhaan this year I went back to being paleo. I went through a week long healing crisis but it helped me hit the reset button. Being paleo whilst having a child is very different to my previous life before I became a mother.

This year I have noticed so many incredible improvements in myself physically, mentally and with my general recovery post stroke. I’m so pleased to share that I maintain a positive outlook on life and would be nowhere without the love, blessings and mercy of Allaah. I am so undeserving yet so grateful. If Covid-19 wasn’t the main situation in life at the moment, i would absolutely love to revisit my therapists in rehab to show them just how far I have come. When I visited in 2018 they were proud of me then. I’m so pleased I was chosen to be a success story, I’m so pleased and grateful I have a second chance at life, to do good and to do better within my capabilites. My excitement and enthusiasm in writing a post after so long has worn me out so I’m going to wrap up here. I’m hoping to keep you guys up to date more often and start sharing my paleo creations all over again. This Ramadhaan I have become a complete banana bread addict, like most in lockdown, my love of yorkshire puddings is stronger than ever and I absolutely love my chocolate waffles, in fact I had one today!

Stay safe, wash your hands, God bless and please keep my daughter and I in your thoughts and prayers. A x


Parenting After Brain Injury Part 3 (mostly trachy)

After some time I was able to sit in a less supported wheelchair, the rotastand which I used to help me transfer seemed to be doing my core some good. It’s funny thinking about those days now. I would be sat upright and in order to show someone how much thought and effort I had to put into sitting, I would tell them to watch what happened when I would relax and I would automatically flop to my left but over time, the amount I flopped over was becoming less. I remember in my early days of rehab this was still happening because my physiotherapist examined me in my induction to the unit. When sitting I wold flop to the left and when standing if my feet were together, I would fall to my right. It was really bizarre so I always stood with my legs quite far apart because the wider my base, the more stable I was and felt. My head was, and it still making me feel like I’m floating sometimes. I really can’t explain it but it also feels like the opposite at times.

When I was in Royal London my daughter was more used to seeing me which was lovely and I thoroughly enjoyed watching her twirl about and mingle with nurses. Her chatting was relatively less because she was in an unfamiliar setting but eventually she caught on that mama was in “huptal” and if anyone was leaving our house she’d ask them “where going?” and wanted to put her shoes on assuming they were off to see me. She still didn’t want to come near me, if she was tired and needed a nap she wouldn’t even want to be put on my hospital bed. She also managed to make my bed malfunction a couple of times by pressing every button possible in multiple combinations and/or all at once. The main problem with this was the bed would’t go low enough for me to safely transfer. We even tried turning it off and on again. Nada. Then some Healthcare Assistant (HCA) came along and she fixed it.. multiple times. They had to call her from the adjacent ward and I acted like I didn’t know what happened each time. No hablo Ingles. In fact, no hablo at all!

In the last two weeks there was all this drama over my secretions (I wasn’t swallowing saliva as one normally would) which was gathering on top of my lungs. This would cause excessive coughing which hurt my head. I knew I had secretions which needed to be removed and my signal was using my right hand, four fingers together almost touching my thumb like tongs repetitively. That was my suction signal and because I couldn’t speak I was the patient who always banged frantically on the side railing of her bed. That was my call. No buzzer needed. The doctors and physiotherapists said the tube in my neck should be smaller so I remember on maybe August 23rd a doctor who was very butch came along to change the tubing size. Again, I couldn’t speak so I gave him the thumbs up (that was my thing and if you were really nice you got two thumbs up) and mimed something just before he began. I mimed it but my sister lip read and said it aloud, ” ‘Do a good job’, she said” – I used a movie quote on him. At that moment I thought that was equally funny and stupid. He proceeded to change my tube and an oxygen mask was placed over my nose and mouth whilst they took me off my main oxygen supply. He was being supervised by a lovely older Australian Doctor. She was brilliant. There was a moment when I couldn’t breathe and although it felt like ages, Aussie doc was telling me how great I was doing and how relaxed I was so I assumed it was all good and normal. Then I threw up a little in the mask which was surrounding my mouth but that’s when I was able to breathe again so I breathed and saw the vomit bubble. Classy. The change in tubing went really well and was painless so I was pleased. Every time a nurse suctioned me they had to suction around the tubing coming out of my neck(same as before). That’s where I was coughing from, not my mouth so I’d have to cover my neck when coughing which was amusing. They would aspirate me, which meant removing mucus from my subglottis using a syringe. They would then measure and record the amount of mucus extracted. Apparently this was all I was waiting for to become zero and then I could finally be decannulated and have my trachy removed and I should be able to speak. In theory. Over the next week or two this was closely monitored and it was suggested that my oxygen flow was changed to warm oxygen to help my secretions loosen up easier so I wasn’t having such severe coughing moments. It did help. I should also mention that when I was on ITU I was ‘restrained’ to put it, bluntly.

On ITU I was naughty. I was scaring everyone and my Dad was ready to tape my hands down. So it turns outs it’s normal for people who’ve had brain surgery to be agitated and fight and tug at stuff… I was trying to pull out every tube in me. I actually remember fighting with various members of my family, trying to push them away, punching one of my sisters in the face (bonus points for it being the nose, that counts as a bullseye, surely), I remember constantly being told to behave and the number of times I was firmly told “No!” was beyond ridiculous. And I understand why now because one night I pulled out five tubes; my catheter, a cannula, trachy tube, NG tube and my head drain which was draining blood from the cerebrospinal fluid in my brain. That one was very bad and I needed an emergency CT scan to make sure I didn’t screw my brain up.  The thought of it scares my family to this day and grosses them out.  Alhamdulillaah I didn’t cause more harm.

So anyway, I had these large wool stuffed, lilac mittens that looked like boxing gloves put on me. In my dream I was feeling unwell but the mitts were irritating me. That’s when I punched my sister in the nose. Nobody knew but my right hand was tingling and I wasn’t really with it and obviously unable to speak so I did everything I could to get them off. In my dream I saw relatives sat on my bed and my parents too, it seemed like they were ignoring me so I was hitting them to get their attention to say take these things off me. I remember faking a fever and putting a hand over my forehead to say I’m ill remove them, it didn’t work. I mimed how can I sleep like this I need to put my hands under my cheek, it didn’t work. Instead my sister said I could sleep in any position because she saw me sleep every day in random positions and told me to stop lying, the mitts weren’t coming off. Apparently one nurse loosened them towards the end because she made a deal with me and I said I wouldn’t take them off. I put my hand between my knees and successfully removed a mitten, my expression was apparently comical and I looked so chuffed with myself. The stories of me highly sedated were hilarious. I actually wish I met myself back then. Eventually the mitts were removed and I did promise to behave myself otherwise the mitts were going back on. Those things traumatised me. I can’t believe nobody believed that I needed them off. My right hand was tingling. I noticed that when I left ITU and was with it, the tingling got worse, with the cold oxygen tube on my shoulder for my trachy, it felt like my hand and arm were numb, I told my family who relayed it to the nurses to pass on to the doctors and consultants during the ward rounds each morning. Massaging it helped for a while but it was spreading to my right leg. This tingling and numbness was slowly overtaking half my body and I didn’t know it. I was eventually given medication for this about two weeks later (being a mute, essentially, meant noone knew the true extent of my problems and what I was feeling. The pain was from this numbness wasn’t so bad then but it’s nuts now. I have a high pain threshold so I tend to not make a fuss of pain.  I think it reached the point when it was keeping me awake at night that I was finally given medication).  After my trachy tubing was made smaller and I was given hot flow oxygen, my numbness felt better. It was the peak of summer and there I was with a fluffy, fat blanket I requested from home. I was never cold but now I was freezing. I assumed the cold was making me numb so I just sucked it up.

Things were a lot better with the warm oxygen, however, during a physiotherapy session, I was sat up and threw up a whole load of mucus, not out my mouth but it was gushing from my neck, to the point that one of my physiotherapists swore, I guess it took him by surprise and there was only so much he could catch but he was really cool about it and noticed pretty early on that I had a really irritated cough that would always get bad when I moved or sat upright. I’m so grateful he spotted this and was on the ball because I just remember being concerned about my arm being numb. He immediately paged a specific consulting team and raised his concerns with them, they came down and I was nil by mouth (or as I like to say, nil by nose seeing as nothing was entering my mouth that evenining until after my procedure the following morning)the new tube was  too long so was irritating me and my cough was getting worse and when I thought about it he was right. I had my two physiotherapists, occupational therapist and speech and language therapist around me when I threw up from my neck. Very classy. I wrote a note to them saying i had a phobia of vomit, I really do. This led to a discussion about morning sickness. I didn’t have any so that was an incredible blessing for me. I also wasn’t intolerant to any foods which was even better but being pregnant for the rest of one’s life isn’t an ideal or possible cure for food intolerances.

so going back to my trachy tube being changed, a dr from another hospital (turns out it was my local) was there and he and my dude PT did that trachy change. I would just like to say that despite it being a smaller tube, when the dr inserted it into my neck again it was so incredibly painful and quite traumatising. Thankfully my PT was there, talking me through and comforting me the entire time, telling me how well I was doing and how brave I was. He knew how to do the change but wanted to be shown once more before doing it on a patient. Later down the line when there was discussion about weaning me off the oxygen and making me breathe completely on my own again, I was worried they’d change my tubing again but it turns out it was just a straightforward removal of the tubing and I should be good to fly solo from then, hopefully.

Throughout these weeks, seeing my daughter gave me so much joy and pleasure to just observe her. I didn’t realise then but she was a cruicial part to my recovery. I didn’t know the extent of my problems back then or that I needed rehabiitation care. Somewhere in my mind I assumed I would stay at The Royal London with all those same patients and soon I’d be walking and talking like my old self, dressed in my own clothes and then I’d go home and that was it. I was so wrong and so naive I’m willing to blame the meds and not my lack of intelligence.

During this time I was so happy, I also had a permanent goofy smile on my face after surgery (my facial expressions are normal now, thank God), my recovery and outlook seemed good to all and I was happy being surrounded by my family and daughter, especially on Eid day. Every day back then was a good day. I did wonder if I was indenial because surely it wasn’t normal to hear you were so ill you almost died a few times and be that happy. I even wrote , “I don’t know why I’m smiling so much consideing I almost died” to which my sister replied, “It’s because you’re grateful.”
And I was, I still am. Emotional times. Pass the tissue box. Until next time, people… Peace!

My Stroke Story

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! ❤

I cannot tolerate…

I’m doing that really important thing today calling “sorting out your life before you screw it up so badly you end up being mental all over again”
Long title but I think you get the point. Back in September I ate all sorts of junk to have this human MOT test done to see what I was intolerant to, what the problems were with my body, to check out my hormones and yadda, yadda, yadda. I found out I was intolerant to loads things. Due to my busy life style and can’t be botheredism I kinda fell over, my face met the floor and it was downhill since then. Not like the good ol’ days(!) so it’s all good. I can fix it if I fooooooocuuuuusssss…

The list totals up to about 50 things but obviously a few categories include several things so it means most, if not all staples are out the window.

So, my intolerance list in no particular order:

  1. Fructose – that’s fruit sugar in case you didn’t know
  2. Cheese – I eat the raw kind if I find it and it doesn’t smell or taste like feet (note: that doesn’t mean I’ve tasted feet before)
  3. Cow’s milk – I totally drink raw milk though!
  4. Gluten – This is summarised as the next three items of food
  5. Wheat
  6. Barley
  7. Rye
  8. Quinoa
  9. Spelt – I think?!
  10. Oats – apparently I should be able to stomach (nwithhout pun intended) some.  I’m happy without.
  11. Seafood – prawns
  12. Rapeseed oil
  13. black pepper, apparently.
  14. Nutmeg – we Muslims can’t consume it anyway
  15. Pork – So haraam even the test’s telling me to avoid it.
  16. E211 – aka sodium benzoate aka benzoic acid sodium salt
  17. E214 – aka Ethyl p-hydroxybenzoate
  18. E215 – aka Sodium ethyl p-hydroxybenzoate
  19. E216 – aka Propyl p-hydroxybenzoate
  20. E217 – aka Sodium propyl p-hydroxybenzoate
  21. E218 – aka Methyl p-hydroxybenzoate
  22. E219 – aka Sodium methyl p-hydroxybenzoate
  23. E220 – aka Sulphur dioxide a common preservative used in almost everything processed. Lovely.
  24. E621 – aka Monosodium Glutamate aka MSG which needs to be illegal and banned from the Earth.
  25. Yeast – all kinds as far as I’m aware but specifically brewer’s yeast.
  26. Soya – again, needs to be banned from Earth
  27. Brazil nuts – adjusted my raw fudge recipe for this. Still yummy though!
  28. Cashews
  29. Peanuts – really? Mind you, they are legumes which brings me on to…
  30. Legumes! – all of them, this includes…
  31. Lentils – all of them obviously
  32. Grapefruit – was never a fan
  33. Kiwi – a known allergy in my family.
  34. Hops
  35. Malt – as above really. No malteasers
  36. Corn – aka maize, refined maize starch and all those similar things. Includes popcorn
  37. Goat’s milk
  38. Rice – white, brown, ground, flour
  39. Allspice
  40. Tomatoes
  41. Flaxseeds/Linseeds
  42. Nori – aka Seaweek. Need to find out if that includes kelp noodles which did give me stomach aches… oops?
  43. Chia seeds
  44. Kelp
  45. Semolina -I was totally intoxicated after consuming halwa, an Indian dessert so that was obvious
  46. Agave – agave syrup is apparently bad for us anyway… more on that some other time
  47. Millet
  48. Hemp flour(?) but apparently I’m ok with hemp seeds so abstaining from all to be safe!
  49. Stupid people – Never tried eating one before so that’s good (the human MOT didn’t show this, I may have added that in myself

May Allaah have mercy on me and make this next stage in my life easy for me, aameen!