I was 38yrs old when I suffered my first 'stroke'. I was in the middle of a very harsh CRPS flare up with my pain score rarely dropping below 9/10. I remember going to bed around lunchtime with a severe headache on the left side of my head. I telephoned Kirsty at work to tell her that my right leg & arm had gone very heavy but found that I was slurring my words whilst trying to tell her & some words, although I knew what I wanted to say, just wouldn't come out. Not long after my phone call, my mum arrived to check on me as Kirsty had told her that she was worried about me. As soon as my mum asked me how I was, she could see that something was wrong & immediately phoned my GP who said she would come to see me as soon as she started her emergency house calls. By this time I was starting to worry about the prospect that I was having a stroke due to seeing it first hand with my grandad for many years before he passed away. I could see my mum was thinking the same thing so she contacted Kirsty again & told her to come straight home. She arrived just as my GP was telephoning the emergency services to arrange an ambulance to take me to the the acute admissions at our nearest hospital.
After arriving at the hospital we bypassed the ER dept because my GP had phoned ahead & organised a bed on the Acute Admissions ward fearing that I had indeed suffered a stroke as by then I had lost all my speech & my ability to swallow as well as being paralysed down my right hand side but this information seemed to have been lost on the way. I was put in a bed & was told that a doctor would be along to examine me as soon as one became available. I was soon joined by my wife, my mum & my two sisters. Little did we know just how long we would have to wait until we got to see that doctor.
It was about 9pm before I was examined by a junior doctor despite my family pointing out to staff that it had been about 6hrs since I was last able to drink some water & then it still took a further hour before he decided to put me on a drip. By this time, it had been 10hrs since I last took my pain killing meds for my CRPS which meant that I was in absolute agony but was not able to tell anybody due to the problems with my speech. Eventually Kirsty figured out what I was trying to tell them but, as I have found regulary over the years, the doctor had no idea what CRPS was so told one of the nurses to give me paracetamol injection which made no difference whatsoever.This was the start of my CRPS nightmare.
It was 2am when I was given a CT scan which the doctor said had shown that I had suffered a severe stroke & transferred onto the specialist stroke ward. The staff were fantastic & very caring but had never come across a CRPS patient before, never mind one that couldn't talk to explain his condition. This meant that every time a nurse came to my bedside & held my hand or took my pulse, they were unknowingly, putting me through immense pain which I couldn't tell them about. My speech problem also meant that it took over 4 days before my pain medication was reinstated but due to my inability to swallow, I was given it via a nasal gastric tube which was not pleasant. Eventually, Kirsty placed a poster over my bed warning staff not to touch my CRPS affected arm & explaining a little about my condition.
It was ten days after my 'stroke' that I was told by my consultant that he had looked again at my scan results & concluded that I had infact NOT had a stroke at all. He said he had no idea what it was but the symptoms were the same as a stroke so my rehab plan would be just the same as a stroke patient. When my family asked him what investigations he would be carrying out in order to find what had caused my condition, he told them that he would treat the symptoms but would not be doing any more tests as he was not too interested in what caused them. It was left to my wife & sister to finally discover that it was not uncommon for some CRPS sufferers to suffer from stroke like symptoms which were somehow linked to the amount of pain the brain was having to contend with at that moment in time. Personally. I think it was the brain's way of saying "I can't cope with this amount of pain" & shutting itself off. Just like my computer does every time it gets too hot. I then have to wait for it to cool down before it will reboot itself. This is just like what happened to my brain but the reboot took a total of 9 weeks before I was allowed home.
My rehab was a long & gruelling journey, made worse by the fact that my physiotherapists had to set an exclusion zone around my CRPS arm which was also the arm that was affected by the stroke. Because of this, my arm is still pretty useless due to the total lack of physio & will never really regain all the movement that I lost. It took me 9 weeks before I was able to walk & climb a few stairs with the help of a walking stick but now, two years later, I still need the assistance of a carer who comes every morning to help me out of bed, take a shower & make my breakfast & lunch. We are in the process of trying to find the money to build a wet room & toilet downstairs to give me a little bit more independence as, at the moment, I am stuck upstairs all day long because I'm not confident or strong enough to go up & down stairs every time I need to use the loo when I'm in the house on my own.
It's now two years on & I'm still suffering from mini strokes/pain seizures every couple of weeks. The docs are still saying that they are caused by my pain which means the only way they can prevent them would be to reduce it. This looks further away than ever & each time I feel a stroke starting, I wonder will it be a mini one which will take a week to recover from, or is it another severe one which will land me back on the stroke ward if not worse.
CRPS really does affect every part of your life. It's already destroyed mine & is well on the way to destroying my wife's life as well. The question is how do I prevent it from destroying my children's lives. Sometimes I feel that they would all be better off without me but then other times I think that having me like I am is still better than not having me at all. I just hope my children don't grow up hating me rather than just hating my illness.
Ian.
