It is a year since I had my stroke. It has been a hard year – accepting that I was disabled and not likely to work at the same level as before, the added complications of developing epilepsy – and more medications, most recently developing neuropathic pain in my stroke leg – excruciating pain and, you’ve guessed it – even more medication, dramatically reduced income and the complications that brings, having to fight to get Disabled Living Allowance, and now having to fight to retain Employment Support Allowance because the privatised doctor whose organisation gets paid on results (ie getting people off benefit) has sent a report saying that I am fit to work, etc etc.
The upside side is that I have met new people some of whom are inspiring, some of whom have done their best to help, some of whom are just good people. I have got involved with Connect and am visiting others who have communication difficulties as a result of stroke. I have helped a local agency who get people back to work. Despite my problems I have got a lot better overall – at least I am relatively mobile and can dress myself (most of the time except when the neuropathic pain gets too much like yesterday) and can cook (which I enjoy) with only a little help.
I dont know what the future will hold. But that’s the same for anyone………………..
The madness of the UK welfare system never ceases to amaze me…. I applied for Disability Living Allowance after I came out of hospital following my first epileptic fit. They turned me down, mainly on the basis of a report from a doctor from the private company who provide medical assessments to the DWP. After a long drawn out process I eventually won my appeal the day after my birthday. That was two weeks ago. Shortly before the appeal I had another medical assessment at the Jobcentre. Today I got a letter from the DWP stating that I was no longer entitled to Employment Support Allowance on the basis that the latest medical assessment indicated that I was fit for work. They helpfully suggested that I apply for Jobseekers Allowance – then in another letter that came in the same post they stated that I was not entitled to Jobseekers Allowance because I am in receipt of a work pension (that was agreed on the basis that I am permanently disabled). So, here we go again – another appeal, more work for me to get the evidence sorted, and more for my GP, stroke nurse, etc supporting me. I will win the appeal but why can’t they join the dots???? And, for me I have the experience and knowledge to win – what about those who don’t – expect a return to 80′s levels of homelessness and a spike in the suicide rate…….
After having the first wobble, I thought I’d wait a while before resurrecting this…. Blow me down, I had a second one. In the hospital overnight and back home. I feel a lot a better now and having sorted the issues around finances, sort of, I am ready to start posting to this site regularly and hope to provide some useful info etc.
The first thing I really must do is thank all the people who have helped – not least my wife who puts up with me whinging, moaning, feeling sorry for myself at times, and feeling frustrated. My Speech Therapist, Rachel, who was great – we agreed that it was time for me stop seeing her but thanks for all for efforts and putting up with me!!! My Stroke Nurse, Steve, who treads the fine line between my missus’s natural concerns and my lack of acceptance that I have to be careful!!!! Belated thanks to the team who came into my home and helped me to do things indoors when came home. Thanks to my consultant Dr Dutta and all the hospital staff – sorry I am not a “normal” stroke patient and dont always do as I am told….
More to follow…….!!!!
Hi there. Had a bit of a relapse. I was congratulating myself on having gone to the Jobcentre for a interview – not that they offered anything as they are between back to work providers – and having walked back home. I first realised there was something wrong when I couldn’t remember the password for my pc. I was refusing assistance partly because I didn’t want it to real, and partly due to my head not working properly. Fortunately my wife realised and rang the ambulance. Shortly after they arrived I lost it big time.
Following a few days in hospital – and giving due regard to the doctor who saved my life in A&E – I am back home. For the moment I am back on the rat poison as well as the replacement, and I have been very tired. On the bright side, my speech is considerably better – weird isn’t it!!! More later….
My aim with this blog is to give a insight into what is like when you have a stroke, to encourage others in a similar position to share their experiences, to campaign where I see that things are wrong, to support things and organisations that help, and have fun.
I will expose the shortcomings of care and support without fear or favour, and encourage and congratulate those who do the right things. I will highlight things that have promoted my recovery, and share the sum of my knowledge about strokes. I am especially interested in the experience of younger stroke survivors because I feel that stroke is seen as an elderly disease, and more younger people are experiencing strokes – maybe a result of the pressure we are all under in todays society and the bad life choices that are resulting.
So, in the spirit of fun, I want to share with you an aspect of my stay in hospital which sums up the mismatch between a ward based on the needs of the majority of patients and me!!! Some three weeks into my stay, my wife’s nephew (and good friend) turned up and we decided it would be a great idea to wheel me down to the pub and watch the football. The game was good, and whilst I was there I had a pint and was able to get up from the wheelchair to use the toilet. On going back to the hospital we were confronted with the hospital doors being locked!!! Luckily we spotted a group of nurses coming off shift and they pointed out a back door where we managed to get someone to let us in. When I got back on the ward I was questioned as to my whereabouts and the fellow patients in my section of the ward told me that I was in trouble!!!
The next morning, the nurses were ribbing about it and were telling me that I was due for a visit from the sister! Sure enough, I was confronted by the sister that morning, who drew the curtains and proceeded to give me a telling off. As part of this she told me I must not drink any alcohol because of my medication – I had already worked out my point levels(!) and I proceeded to tell her that she was wrong!!! This wound up her more!!! Discretion being the better part of valour, and calculating that I would be there only a few days more, I subsided and took my telling off. When she had gone, the nurses who were at the next bed to mine, also curtained off, emerged giggling!!!
Later that day I was visited by a young female doctor who questioned me about the evening before. She wanted to know how I got to the pub and how I negotiated the toilet problem, and said “I think you don’t need to be here, do you”, and sympathised with me about how boring it was on the ward!!!! Before I knew it people were redoubling their efforts to get me home!!!!!
More next time!
I am a 51 old year male, married to my second wife for 6 years, with 3 children from my first marriage. I worked for the NHS for twenty years in a variety of roles, the vast majority of my career being in mental health. I ended up working for myself from November 2009, doing interim managerial assignments and training.
Until 7th October 2010…..
That day I got up, went downstairs, had the usual cup of coffee, ran my bath. On stepping out, I realized that there was something wrong with my right arm. It didn’t seem like it belonged to me. I decided that it must have been too hot in the water. I sat down on the sofa in the living room for a few minutes. Presently I felt that I better get up, and that’s when I fell to the floor and realized (a) that I couldn’t get up and (b) that this was now serious.
I couldn’t speak, just moan. Luckily my wife heard me. She called the ambulance, I was drifting in and out of consciousness, all the while. I don’t remember the paramedic arriving. I am dimly aware of the ambulance coming and they trying to talk to me. I remember them getting me up to a sitting position and walking with assistance to the ambulance. I remember most of all that I became aware of the implications of what they were saying about me – I had had a stroke.
My right arm was affected, and I was drifting between being aware of hospital and what was happening and being out of it. I just couldn’t speak well at all. The concept of time seemed to disappear and when I looked at a clock and tried to tell the time I just didn’t get it. Some time afterward, me and my wife talked about this and she told me that it was at this point that she got worried that I would end up with some severe disability.
Eventually they took me to the stroke ward. I got in to bed and slept. Early in the morning I woke to find I had lost the feeling in my right leg. The stroke had kept going overnight. Now I couldn’t walk. I was at the mercy of the staff! I had a compromised sense of dignity and a recognition that this was serious. On that second day I thought about suicide – seriously – and felt more sorry for myself than I have ever felt. By the time the day ended I had determined that I was going to get better and quick too!!!
