Hi my name is Evelyn. I had a stroke last November and been in hospital until beginning of February. Now at home in a wheelchair. Can’t use my right arm and leg. I had physio athomeuntil this week, but have now been discharged. Luckily I have family living nearby, but they can’t be around all the time. It does get quite lonely .I find it quite difficult to keep my spirits up
I have carers coming in4 times a day, but that is not the same
Hi there Evelyn12. Just though I’d say hello and welcome you to the forum. I’m sorry that you feel so lonely and I imagine very scary being alone. I do hope that you’ll find friendship and support on our forum, we all can identify with you on how our stroke has affected us and try to help you through these strange days. We may not be able to be at your door, but in spirit someone is here all day. I’m sure that you will be offered lots of suggestions and ideas over the next few days. We all share our different coping strategies and I hope that you might just find something that will be of comfort for you. (Mine is Boom radio, I’m a 60’s child). Very best wishes Norma751
Hi @Evelyn12 & welcome. Sorry you’re feeling lonely at times. It can be a lonely place to be. I try and keep my distracted doing things I am able to. For me, straight after my stroke that was things like colouring, attempting jigsaw puzzles etc. as @Norma751 says there’s usually someone around on the forum that can offer advice and support. Maybe you could look at joining the stroke associations online activities too. I did them in the early days and they definitely helped with the isolation.
https://www.stroke.org.uk/stroke/support/online-activities
They also have a here for you service
https://www.stroke.org.uk/blog/here-you-connect-other-stroke-survivors-and-carers
Both of these may help you. Have a look……you have nothing to lose.
This is understandable. I don’t know what sort of lifestyle you had before you had the stroke, but the change is almost significant and your condition is hugely constraining, but help is available.
I am sorry you have been discharged from physio - sadly this is the state we live in. Physio is offered on what seems to me to be a very limited basis and then we are left to fend for ourselves. For many this means no more “professional” physio. From my own experiences as a carer I feel good physio is one of the foundations for post-stroke recovery and rehab. If at all possible and if you can afford it, you may wish to get private physio - they don’t come cheap at around £100 per hour but I believe they are worth it if you get a good physio. I must stress, this is not always guaranteed because what stroke survivors need is a neuro physio (I believe that is the term) but essentially it means the physio has to have an understanding of the needs of stroke survivors in terms of how their brain might affect their movements. But if you find a good physio there is no doubt there are benefits.
In the event you are unable to afford a physio, you may try to get your family or friends help you with the exercises you have been doing during the time you received physio as part of your hospital discharge care package. I hope the physio you had was good and they left you with exercises you can continue to do on your own or with the help of family of friends.
I haven’t seen it myself, but I believe the stroke association has on-line activity groups where they do exercises etc? Having just typed this, I note Ann (@Mrs5K) has already flagged this for you and so you may well find this very useful.
These activities may help fill some of the gaps you have in your life and with time you will be able to do more.
Depending on where you live, there may be local support groups where you can go and meet other stroke survivors. I believe in my area they meet in a cafe once a week or something.
In short, it’s not as bad as you might have first thought. You have the ability to open many doors if you so desire. It’s your choice. The steps you have taken to join this group leads me to think you will do well. You come across as a very positive person who is aware of their situation and who understands there are things to be done - life does go on after a stroke. Many people go on to live a very healthy and happy life. It may not be the life they had before they had the stroke, but that is not the point. Life changing events happen all the time. It’s how you deal with them that matters.
I leave you with a thought.
Welcome. Ask any questions or just come on here to rant if you feel sorry for yourself.
My local area there is a service where volunteers visit housebound people. You could ask your gp or local council if there is anything similar in you area. I think the stroke association offers a service where you get a weekly phone call.
I am not sure how many people are aware of this or bother to use it. I don’t even know if GPs proactively promote it …
Thank you for your kind words. I have already contacted a private neurophysio
Thank you for your kind words I used to do word searches and sodium, but my eyes are quite bad since, I have trouble focusing
Hi Evelyn, I’m so sorry to hear what you’ve been through. A long hospital stay and then suddenly being back home with so much changed must be incredibly hard. I can completely understand why you’re finding it difficult to keep your spirits up.
I had my stroke in January and although our situations are different, I recognise a lot of what you’re describing, especially the loneliness and loss of independence. Even when you have lovely family and carers around you, it’s not the same as having your old life back or having people there all the time.
Please don’t underestimate how early you still are in recovery though. Stroke recovery really can continue for a long time and improvements often come very slowly and in small steps. Being discharged from physio doesn’t mean you won’t improve further.
I’ve found that talking to other stroke survivors helps because they truly understand the frustrations and emotions that come with it all. Try to be kind to yourself on the difficult days. Just getting through each day is an achievement at the moment.
You’re definitely not alone Evelyn. All the best Peter.
Thank you Peter for your kind words
I know we posters up my gp surgery there are also ones for carers offering either companionship or support groups. There are day care centres for the elderly and disabled. Sometimes it’s a matter of patients taking the time to read them. But if surgeries have these posters then certainly the receptionist should know all about them to ask.
Lorraine
Hi @Evelyn12
Welcome to the community, I’m sorry to hear about your stroke.
I would echo what @Mrs5K has mentioned about Online Activities, we have a great range of activities which can help you feel less alone. I hope that being in this community will also help you to feel less lonely.
If you need anything whilst you’re using the Online Community, please don’t hesitate to tag me using the @ symbol and my username.
Anna
The information may also be in your local library. There are also lunch clubs often run by churches if you can get out
