Worse since stroke

Thanks Mahoney. I will look more closely to other things on site Im sure they will be of help. My problem is at moment Im too emotional to speak to people. NHS tick boxing indifference has really taken its toll on my well being. Its taken me weeks to approach people on this forum And because of people like yourself it has been the best thing for me.

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Jane Im so grateful for your reply. I thought I was the only one to get worse. Your stroke nurse sounds great I hope I find someone like her but Ive just found out that the hospital have discharged me because heart monitor I had month ago show no problems (pre chest pain currently having) No official test result or contact from them just something stated in passing from GP surgery.

Rups your reply has had a profound effect on me . Im so grateful you have taken the time to reach out. Your description of how things have been for you mirror mine so I now feel as if Im not going mad or being silly or imagining things. Your right my mental health has taken a battering and its that I have to look out for as well. Given your kind words I will look out for that side of things with the help of this forum as well

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Thanks Chris I will try to keep on going on. :slightly_smiling_face:

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Love your strong straightforwardness made me smile and want to stand up for myself bit more. But you have hit the nail on the head

isnt handmaids tale on i player , whats it about, our i player not working at moment, bt coming on tuesday

I’m truly sorry about your story. I had mine in 2016. I haven’t had much support from my GP Surgery at that time and until just recently when I’ve changed GP surgeries , put a complaint in to the surgery , the local NHS CCG , and I’ve taken my complaint to the NHS OMBUDSMAN in London.I’m still waiting for a response.
The stroke association wasn’t and hasn’t been much help , even after I took them to task this year.
I assume you’re not working. I suggest you apply for universal credit and ask for a limited capacity for work and work related activity assessment, plus apply for Personal independence payments (P.I.P.), apply to gateway to care , for help with modifications to your home, apply for reduction in council tax, if you’re getting u/c you should not pay for your prescriptions.
Also apply for the warm home discount which should be applied to your gas and electric bills from your supplier.
As for your GP, It is upto them to make sure they look after you, if you don’t think they are, i suggest to talk to them , or at least, write a letter explaining your concerns, if they ignore you then I would suggest that if it is at all possible, to change to a new GP Surgery , one that will have your best interests at heart.
I hope what i have said helps you.

@tricia3 it’s a dystopian tale where fertile woman are enslaved, the story is mainly about one woman’s fight to be reunited with her partner and daughter and fighting the system.

Strangely, I was watching this program when I had the stroke and I haven’t watched it again, even though it was a good series, I just associate it with me having a stroke so I’ll never know if she makes it back to those she loves.

too depressing. feel low as it is,

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@tricia3 sending you big hugs, all the best, take care

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Maggers I am in the same boat Cheltenham hospital is a nightmare give me my meds and off you go .
So since july when recovering from a 2 1/2 month coma and no support from NHS .Thank you Stroke Association a breath of air and giving me a direction to follow.
Very grateful …
So Maggers there is alot of help out there .

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@gilg hi and welcome to our little group, sorry to hear you’ve had a stroke and received little after care from the NHS.

Hopefully you’re making progress with your rehabilitation.

Wishing you all the very best, take care

Morning to you, i am like you, i dont understand my stroke, i am constantly told that it may take up to and beyond 18 months to recover from my stroke. My wife ,who is blind, constantly tells me to live for today, which i do, for me each day is a new beginning, i have brain fog but she reminds me what’s next and gives me a reason to get going, gets me to get on bus into town, with my walking frame. Good days seem more often now almost a year on from my stroke, so dont dispare wellness is just arround the corner.
Try positive thinking each day is a ew begining on the road to well-being its worked for me. Dont hold back tell someone how you feel.

Must go now, lovely to hear from you. Allan Spencer


thats true , i wrote about in hospital but dont know how to upload

Thanks Loshy ,
Just making my way through the help that is available , and it is great to find the amount of support around .
So many things change and mostly life . I suppose that you have to keep your head above water and not let things get to you .
I am lucky to have a good pool of friends but trying to explain what is going on in your head , that is why being here is so valuable in knowing we are in the same boat but with valued help


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@gilg welcome to this lovely forum although sorry you’ve had a stroke & been in a coma.

NHS support does seem very hit and miss but glad you found the Stroke Association to be useful.

Best of luck with your recovery journey.

Ann x

Hi Maggers,
Like you I had a Lacunar Infarct which was so mild the Consultant wasn’t sure if at first I had had a stroke. Like yourself I was discharged from the Stroke Unit with no support or information over Christmas last year. I had no support from my GP either. Even though the stroke was mild it has impacted greatly on my life, as a stroke does on all Stroke Survivors. I look fine but inside I am not and the fatigue is a big killer. I did ask to be referred to the Community Neuro Rehab Team who were very helpful if you have one in your area. They came to the house and I regularly saw a Phycologist, Fatigue Management Nurse and Physio. They couldn’t really do anything for the physio but it helped to talk and tell them how I felt. As everyone here will tell you fatigue is very difficult to live with and you do have to listen to your body and rest when necessary. I like everyone here find if I do too much I suffer for days after. Be kind to yourself, it is early days. Also joining a Stroke Club helped me. We have quite a bit of laughter which is a great healer. Sadly we are never going to be the person we were before our Strokes but we can try and come to terms with it and know we are one of the lucky ones - Survivors. That word was difficult for me to start with but I now realise the alternative doesn’t bear thinking about. It is hard that non-stroke survivors don’t always understand how we feel, especially if there are no outward signs. Tell people how you feel and don’t feel bad about it. Look after yourself and go with the flow as they say. There will be good and bad days but everyone here is looking out for everyone else and understands how you feel. Take care and I wish you all the best.


Thanks jonty for your no nonsense advice its very empowering for people like me who cant stick up for themselves and need caring people like yourself to feel like someone is on their side. Sorry for late reply Ive been off line still overwhelmed by it all. After waiting for month to see GP he then referred me to Leeds General Infirmary for further investigation into fatigue,brethkessness,chest pain and Ive just received a letter saying they are not accepting his referral. What the hell. Im going to post this now and see if others have had similar experience and what to do.
Meanwhile thanks again jonty :slightly_smiling_face:

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@Maggers it seems to be more & more common that referrals are rejected. Not Stroke related but I had one rejected previously. My GP saw me again & resubmitted a request worded differently & it was then accepted. Go back to your GP & discuss it further. I’d hope they’ve given a reason for rejection.

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Thanks Mrs5. Makes me feel hopeful. Ive emailed GP. Hope I get a reply soon.

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