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using our experience to help others



I know I have nothing to complain about really but I have been feeling quite lonely the last few days. It is still winter here and raining. I don't feel that it is just that, it is also the fact that if I want to talk to someone it is me that has to ring. I don't have friends who automatically ring me now. I do have lots of pleasant acquaintances and that helps but it is not the same as having intimate friends. I think that is partly because the people who supported me through Ray's journey were often carers and half of a married couple so I no longer fit in their world. I am alone so two and one make three if you see what I mean.


Coming back from England to an empty house was difficult as it always will be. I have a lot to do in the house and the yard so keep busy, I had a fairly sociable week last week so got through it okay. This week has less social occasions and today particularly the time has hung heavy on my hands. Sure there is plenty of housework to do and I have done a couple of major tasks but that is not what satisfies me,it just accentuates my need to have interaction with people. Tomorrow whatever the weather I am going to get out and about.


Funny how I thought I would easily fit into life as a widow and didn't realise sometimes the loneliness would be devastating. Which is why I keep busy, I fill my life up with activities and time passes.


Today HostSally and I did a general chat as the stroke survivors came in to us as well. It turned into a very interesting chat as of course we came into each discussion with several different points of view. One of the subjects was whether or not the survivors thought they would have been able to be a caregiver if the problem had been reversed. A couple said they wouldn't but I think we all would if we thought of the love, commitment and sense of duty we each have and applied that to the situation,


Love, duty and commitment is why I cared for Ray. As I told the chat group I was brought up by my parents to have a view of life where I had a social duty to be active in my neighbourhood, so I ran messages, minded younger children and looked on myself as a helper for the aged. It was a good way to grow up in a way as before social services and the way society operates these days it was the neighbourhood that looked after the aged and the needy and that meant children as helpers as well as adults. Most of the places I grew up in were small villages which have now been absorbed into the urban sprawl.


This early training meant that where there was a need I have seen myself as being able to fill the gap, disastrous sometimes as I do overload and suffer burnout but also a good thing as I can commit time and effort to causes I believe in. It is a pity that our society on the whole does not feel the same way. Imagine a world in which people automatically helped their neighbours, what a difference that would make to the lives of survivors and caregivers alike.


Thanks to all who were in chat today for your ideas, support and encouragement. If you are reading this and for some reason do not go to chat think about doing so, it is wonderful how much support you get there. HostSally and I were pleased to have the interaction as Caregiver Chat has been slow the past couple of months. I wonder if sites like Facebook have taken people away from Stokenet chats or if it is just a shortage of time that causes the caregivers to think that coming into chat will just be another obligation they try to fit in?


If you think about why you get that feeling that you are alone it is also good to read some of the blogs. I have got so much support mself from doing that. I keep on here as a Chat Host and Blog Moderator because I remember how much I gained by coming to this site when I was sad and lonely, worried, frustrated and in search of information about strokes, treatment, medication and simply how to get through each day. To think if I had not Googled “stroke support” and this site had not risen to the top of the list I would have missed out on so much.


So you are obviously a member on here if you are reading this. Time to reassess the reason you are here. Is it just to read, to comment or to help? I hope that is some of the reasons. I like to think this is the friendliest site I have ever been on and the most supportive and informative. Where would I have been without instructions from Debbie (Ethyl17) on how to fit a bed so it was easy to make a change after an episode of incontinence or without coming on and reading one of Asha's blog about going with the flow when like a salmon I was battered by the rocks of life as I battled my way upstream?


I wonder sometimes if I should move my blog somewhere else like Blogspot but then I do love the comments and opinions of the people here so much because they have been there and done that as far as stroke is concerned and that is really valuable as the voice of experience. And now in my widowhood, well one day we will all be separated from those we love be it parents, spouse or child,and hopefully some of what I write here will help in that situation too.


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I still have a lot of people coming up to me in the various groups I belong to and telling me a friend or relation of theirs has had a stroke and asking for advice etc.  I usually say that some of my ideas are out of date now but a neurologist is a good starting point.  But at least some of the usual advice still applies: do your research, pace yourself (if you are a caregiver) get some therapy (for the survivor), eat well,sleep well, keep healthy..That is still good advice for all stroke survivors and their caregivers.

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Sue, I'm glad you've stayed on as your insight still offers support. Now, even more so to me as I wander through these first months of widowhood. Just as every stroke is different, I think every experience of loss is different. There is a difference between becoming a widow after a long illness and becoming one suddenly or after a few months of illness. One is not better or worse (it is all loss!) but the experiences and the things we each deal with are different. 


The exhaustion of caregiving and the pain of seeing your loved one suffer is now replaced by loneliness and a change in close relationships. You've managed it all and will continue to do so, I'm sure. I think there is a place for here for those of us who have lost our loved one to stroke or its complications. It is a reality for some of us, thankfully not all. So much good work has been done in stroke recovery and encouragement should be the primary focus of this site because recovery happens for so many. But when recovery does not happen, it helps to connect with those who have been through something similar to what we have gone through. You have provided that connection for me just by staying on. ~~Donna

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