On 21st January a twinge of pain that I had in my left shoulder on and off (I thought it was from bad posture and too much sitting g at the computer) got worse and left me with numbness right around my torso, I then got some weakness in my leg… As I was worried I immediately made an appointment with my GP who diagnosed me with a trapped nerve in my back. After a few days on painkillers everything seemed better and I was back to work! All seemed fine til on 21st February when I was driving home from work and sneezed while holding the steering wheel tightly, by the time I got home I had some pain in my left shoulder again… Over the course of the weekend the pain got worse and by Sunday I had very little use of my arm. I ended up in A&E where I was told I had either fractured my shoulder or had calcification of tendons. On 24th February I attended the fracture clinic where I was told it wasn’t a fracture, but nothing more! The power was still pretty much gone in the arm/hand and I was signed off work for a few days. I had to attend the GP later that week as I was anxious about the lack of improvement in the arm, by the following Tuesday there was still no improvement and I returned to the GP to ask for a referral to physio as the hand still wasn’t improving. She assessed my hand and felt it wasn’t needed however and gave me some exercises to do. It was her view that the issues were just due to having not been used much over the week and a bit since I’d hurt my shoulder. On that evening I felt the left side of my face was not 100% in my control and that my speech was being effected. My sister visited that evening and she pointed out that she could see issues with the left side of my face. On the Wednesday I had an appointment about my PCOS and I spent the day feeling like my tongue was too big for my mouth and that I was tripping over my words. That evening I finally managed to tell my mother my worries through a haze of tears (it wasn’t pretty-we’re talking full on snots and tears here!!) we decided that we would use my VHI cover to go to a private clinic the next day.
On the morning of 6th March we headed off to the Galway clinic and I cannot commend them enough! I arrived at 10am and was sent for an MRI by 11:30. When we got the results shortly after 2pm you could have knocked me with a feather! The scan showed that there was “something” on the right side of my brain and I was told I needed to be admitted immediately! At that moment “something” seemed like the most terrifying word in the English language! I was told that I would need to be transferred to Beaumont as it was the best place to be for anything neurological!
On the Friday morning I was told that I needed a ct scan before being transferred to Beaumont. I was sent for one that morning and walked down to have it done only to be told that I needed a blood test done first so I walked back to the room to wait for them. My mother and sister came in to see me and terrifyingly when I went to walk to the bathroom my left leg went weak. By the time I had to go back for the ct I had to go in a wheelchair. I was transferred to Beaumont straight after lunch by ambulance. When I got to my room in Beaumont I went to walk to the bathroom and collapsed. It took my mother and two nurses to lift me back to the wheelchair! Cue a week of being lifted essentially from bed to chair… That was the week my brain stole both my dignity & independence!
That night a member of the neurology team came to see myself and my parents at approximately 10:30pm and confirmed for us that I had a brain tumour and told us that the plan was to do a biopsy on the following Tuesday/Wednesday and see what further treatment was needed.He also stated that the good news was that we were dealing with a ‘primary’ as there were no other tumours visible on the scan (the unspoken word here was Cancer). We were understandably devastated and spent the night trying to deal with the news. The next morning two members of the neurosurgical team came in to talk to us and stated that they did not believe it was a tumour and wanted to do further investigation to be sure. They – or at least the spokeswoman of the duo – felt that whatever happened in any case was complex and she wanted to look to see if it was something auto immune… (After years of watching House I wanted to tell her that it wasn’t Lupus but blood tests to check for Lupus – and everything else- were taken over the next few days. On the following Tuesday (after numerous tests had been carried out) I was visited by my neurologist Mr. Muhammad Taufiq Al Sattar (a truly inspirational man) who informed me that it wasn’t a brain tumour but that I had in fact had a complex stroke (the backache/shoulder pain were in fact unconnected but the MRI scan showed I had a ‘sports injury’ of a bulging C4/C5 spinal disk which was causing the pain) and so would be transferred to the care of the stroke team and a consultant that specialised in that area. I was also moved from the room I had lived in for 5 days (with my mother) to a 6 bed acute stroke unit (on my own!) which was quite sobering… Partly because as I worked out at one stage we had a cumulative age of over 400… And I managed to bring the average down by a good bit!! It especially hit home how serious everything was when one of the men passed away on 18th March. We were bonded into a bizarre little team at that stage and all watched out for each other. I have to say as the ‘wee girl’ in the ward I was spoilt rotten and kind of adopted by “the boys” and their visitors! I also cannot commend the staff in Beaumont enough! On 14th March I started Physio and took my first steps in a week… I was told that I needed to walk as much as I could over the long weekend cue my first visits to the coffee shop not in a wheelchair! Once I got back on my feet progress seemed steady enough. I worked on being able to walk further and being able to walk unaided – although I still have a limp, even now – especially when tired.
After another week I was moved from the acute stroke unit to another part of the ward where I wasn’t being monitored quite so intensely… I kept that bed for two nights before I got a phonecall while on my first day release to say that I was being moved to a general medical ward as I no longer needed to be in one of the 10 designated stroke beds!
I remained in that ward for a mere 3 days before I was transferred to a hospital in Galway and was only 41 hours in Galway when I was transferred to a local hospital to my parents address. At this stage I was deemed to be medically stable and only required rehabilitation – daily Occupational therapy and physiotherapy – as I still had little to no power in my left arm/hand. For the last two weeks my life has revolved around OT and physio and regular home leave but I am one of the lucky ones and am seeing a good improvement with plenty of hard work! I was discharged from hospital to await surgery on 25th April – 50 days after going to the Galway Clinic- but the road to recovery is far from over as I still have surgery and intensive rehab in the National Rehabilitatiohn Hospital in front of me. It will also be many months before I can return to work, or to live in my own house or even drive!
At 32 this is not how I had planned to spend 2014 – my new life begins now as *my* normal is forever altered and life will never be the same again after this!
Angioplasty – without a doubt the most terrifying and traumatising of all the many tests I went through
Loss of dignity/ Having to rely on others for almost *everything*!!!
Discovering that I am incapable of crying elegantly – it was always dirty big tears and struggling to catch my breath while scrunching my red face up! 😦
Not being able to go home to my own house
Not being able to blog,
Not seeing my dogs for a full four weeks and not knowing when I would possibly see them again during that time.
Having a douche of a doctor put in writing that I would be fit for work in 4 weeks time when the reality is that I will be doing well to be fit for work in four months time!!
What feels like an almost constant fight about small things like getting certs for work or to get back basic skills.
Amazing support from family and realising who true friends are.
Meeting some amazing people (especially Mr Sattar)
Discovering my own inner strength.
Lots of very inappropriate laughter with my family.
I feel like this stroke has taken everything from me! I miss my freedom: my car, my house, my own space, being able to make my own choices about things! Luckily I am improving almost daily but there are still struggles and I have yet to have a cranial vascular bypass to try reduce the chances of this happening again.
The most important thing I wamt to say here is that if any of you or anyone connected to you have even ONE stroke symptom please get it checked out ASAP – time is brain as my specialist has stressed to me!
If you suffer leg weakness like I had back in January it is 72% likely you have had a stroke or TIA. Facial drooping and slurred speech is also a very common symptom that is almost certainly indicative of a stroke.
With a stroke the part of the brain effected is essentially dead and you have no option but to train another part of the brain to do its work – and believe me… its damn hard work!! One of the things that has kept me focussed is by reminding myself that I am not sick – every day that I have been physically able to I have gotten up and dressed and not allowed myself to wallow or get into a trap of self pity. I have an acquired brain jury – I am not sick!!What I need now is determination and to have the strength to keep working hard on my recovery – wallowing won’t do that!