I do find it hard trying to explain stroke and its ongoing consequences to my friends, because even the most highly intelligent ones understand little or nothing about it. Today, one such friend asked how I was feeling. I try to honest, so my answer was, 'My good side is fine, but my stroke side finds it hard going'. That was met with the response, 'you are getting better though'.
I felt duty bound to explain that one doesn't get 'better' from stroke because it is not an illness. I added that I was still improving, but progress is slow. I could tell that my questioner still didn't 'get it', so I said no more. Perhaps he'll be able to work out the difference between 'getting better' and 'improving' for himself.
That is so much what I am finding. Only another SS understands. I have thought about taking the option to not mention the stroke aftermath and always to respnd "i am fine". But then when i turn down invitations to travel afar or undertake a walk etc the the same people that fail to grasp anything about stroke will get most put out by constant refusals. It would have been a good idea to all move to the Isle of Wight/Malta etc but thats just dream land.
I forget just how disabled I am. I focus hard on what I can do and carefully select activities that I can manage. No one seems to understand.
I do like your phrase "My good side is fine, but my stroke side finds it hard going'. I equally dislike the response. Do we have the least understood disability ? I think we probably do.
I get this also, it is very hard to accept. I was out with a friend recently though who did get it and it was refreshing. she has ME, and fibromyalgia and continually struggles with people not understanding her condition, especially as on good days she "looks well", whereas on bad days can barely summon the energy to get out of bed and get dressed. my disability is more visible but I still struggle to convey that it isn't an illness or an injury like a broken leg.it is very hard for people to understand what a brain injury is and does to you and what recovery means. it is something that I have struggled with myself for some years. like you, I think, I am approaching the four year anniversary of the stroke. I sometimes can't believe that I have lived with it for four years nearly. I am not "better" long way from it. the struggle as I am sure you will recognize is to be both disabled through brain injury and yet in a very long term recovery with no real idea of what "recovered" looks like. my previous employer had no clue and was mystified by my lack of recovery after two years, but they had another agenda and no interest in understanding. there's a very big educational program needed, not only for friends and family, but also for ourselves. I mentioned the employer reaction as I still have not recovered from the unpleasant experience of being forced out of my job. not that I was doing great, I was struggling and I am glad I don't have to do it anymore. it recurs because it was only this time last year ear when I was facing the very real possibility of disciplinary action with the intention of removing me from post. I suppose I get a kind of post traumatic stress response where the experience gets triggered unexpectedly. but those people really had no clue about the condition and no real interest in finding out. I am lucky that I have a wife who not only understands but has taken pains to read about brain injury an was with me every step of the way clast year through my dispute with my employer. I suppose that's a very long winded way of saying that I recognize your experience. people by and large mean well but don't know what to say, and can only process it through an understanding of sickness. it might be different if we had cancer. one of the things that frustrates me vi's when people ask if I am having physiotherapy, as if that is the magic bullet. I suppose there's a very real chance of not getting better and it is more about living as disabled. but thats hard for people to hear, folks seem to xlikecthe militant language of fighting it and not letting it defeat me etc. I don't do that. but at the same time we have to keep working at recovery while at the same time accepting the reality of having become disabled. for some that is too defeatist to say or to hear. but I have found cit strangely liberating. though the being disabled / working on recovery paradox is something that I still struggle with. it will be different for different survivors. I can't easily say that I am now a different person because I don't think I am really. my cognitive function was not affected greatly, but I am physically restricted in a way that I have not fully come to terms with even after nearly four years. so perhaps it shouldn't surprise us that other people don't get it, because it is a very difficult thing even for us survivors to understand. when the guidance literature says that stroke is a life changing event, it isn't wrong! it rather takes a lot of living through to understand what that actually means. it is refreshing though to be able to talk to some people who do have the patience to understand, in my experience it is those who have experienced some trauma in their own life. I did go a couple of times to the local stroke support group, but it wasn't really my thing, and I didn't feel the lack of social contact. I don't have a lot of mates, but you do wish cthey could get on board a bit more.
you just gave me an excuse to unload a bit there, thanks! been struggling a bit especially as memories of difficult times vlastcyear keep surfacing. I might look into some counseling if I can't get any peace from it.
currently I am working on improving walking and vwas much encouraged by your progress with foot drop. things are improving slowly but this is long haul, and I haven't given myself any difficult targets.
I saw the cancer advert in the gym this morning. It starts off by saying "Cancer doesn't care about you" "but we do" and talks about Macmillan nurses. A stroke advert would be educating for those doubting Thomas's. "Strokes don't care about you or how old you are or how fit you are". "Stroke is something people don't recover from - but how could we end that advert?
Hi John, thank you for the phrase "My good side is fine ..... "
It's very frustrating for SSs to have to constantly try to find ways to describe life, post-stroke, but I found this very helpful, as I'm always trying to improve my understanding. Currently we are struggling with post-chemotherapy fatigue as well as SF, so it's really difficult to be dealing with the fall-out!! The stroke symptoms become evident when my husband is under the weather, and since beginning chemo he has had to rely on walking with a stick again.
There needs to be education around the topic of stroke; a few decades ago a concerted effort was made to educate us about cancer, surely now the Stroke Association needs to collaborate with other stroke charities/societies to plan a programme for educating us about the symptoms and long-term effects of stroke. There are similarities to cancer, inasmuch as stroke can affect anyone at any age, and the outcomes can be very different, surely it's time for Stroke to be put in the spotlight.
Please do not apologise. You are quite right. Personally, I have found more on going support and helpful advice on this site than I have from the medical profession. The most helpful advice for me was when Colin pointed out that stroke is a brain injury and our muscles are unaffected, but cannot get sufficient contact with the brain to work effectively. It was the muscle wastage after stroke that shocked me. When I looked in the mirror when I first came home, my stroke side looked like that of a concentration camp survivor. No wonder my balance was cock eyes and I had falls.
I knew I had to exercise and was lucky that my physio cont8nued for a good year. After that I went to a strength and balance class at my local Life After Stroke Centre. I found that okay, but, over time, I felt that we were treated as invalids rather than pushed forward. That's why I left this for a local class for over 60s. Here we are encouraged to work to our own ability, but to push ourselves a bit further. The exercises are all thought through carefully so that they take into account what we do in our daily lives.
I have also learnt that exercise has to be consistent and ongoing. Repetition is boring but essential. Yes, accidents happen, but bit by bit, ever so slowly, things improve. As you know, cooking has been a godsend to me. It makes me utilise my weak hand and arm and, of course, my brain. Other health problems,of course, interfere with this process. Mine include diabetes, sinus problems and dry eye, but that is nothing compared to having to have chemo. Mentally, fortunately, I am quite strong and well motivated. It must be so much more difficult if you are not.
I apologise for replying at length, but you make so many important points about the need for more effective knowledge and understanding of the long term effects of stroke. I am confident that improving our 'wellness' is better for us all and a saving for the NHS. Personal independence and wellbeing is vital for us all.
Hi JOhn - You are so right. It does take a lot of strong will and motivation to keep going especially when progress is slow but essential nonetheless. I've only been back at the gym 7 weeks and already I have more energy than before even though I am following a slow but gradual programme.
Regarding the comments "You're better though aren't you?" The last few people I have bumped into from pre-stroke days gave me a blank look when I told them I'd had a stroke. Not so much shock or disbelief but a kind of look as if they hadn't heard me correctly followed by "Oh..." and carried on talking about something else. A 'let's brush that bit under the carpet' syndrome! I actually prefer this to the usual reaction of "Well, you don't look like you've had a stroke and you must be better because you're out and about!" Like I'm not allowed out on my own if I've had a stroke LOL!
I agree that more advertising in addition to the FAST campaign would raise public awareness.