Shwmae @chris_crimble, aye, “research”. Unless, reading medical journals with vast amounts of complex terminology, most of what I have read about stroke only touches on the surface, and rarely delves deeper into the experience. By my extended family, I was compared a lot to others they knew who had had strokes. I was 44, and had six TIAs and a stroke, September 2020. Since then, a few friends of extended family had strokes, they are almost twice my age, and I was constantly being told that so-and-so are doing very well, and look how quickly they have adapted and are getting on with life. I was expected to bounce back like a rubber ball. I eventually had had enough of the “dust oneself down” bumper sticker logic, as every stroke is different for every individual, and every person is an individual in their own feelings and approach to life. I stopped engaging in instruction disguised as advice, I felt as if I was gratifying other people’s egos, so I drifted away and focussed on myself, and engage with people who are compatible to my personality and circumstance. It’s tough.
Hi
My sister does not get it although my daughter fortunately does.
It makes it extra hard when they don’t understand how you feel only what they see. I try really hard to stay positive and keep moving but it is not easy .
You are not whinging, just explaining how you feel to a group who understands and I rally hope this helps you as it does mr
Hi.
Your point about mental activity was really helpful. I hadn’t taken this in to account and I think that has been the key to why this has been a bad patch for me.
Thankfully I seem to be coming out the other end after several days of doing nothing
Thanks guys for understanding where I’m at and jane that drawing is where I’m at.
when I had my stroke it was the start of covid so there was very little in the way of support from my GP and local groups, I was able to get a small amount of counselling locally for 3 sessions via phone but the GP still isn’t interested and I still have not been able to see him face to face only t/phone consultations when he says its up to the consultant to direct me and it was his secretary who put me onto the forum.
my family really don’t understand how it affects us inside but then thinking about it I suppose I have been covering up a lot and convincing myself I’m ok so I can work for another few years until retirement.
The one saving grace is I am still able ride a motorbike which I have down sized and weight so I can handle it and it is an escape where I have to concentrate not on myself but others. I certainly do not wish to belittle my family as I believe they really don’t understand and cannot see how it is, my wife was supportive until I went back to work but I think then she expected me to be as I was before and the research she has done is cherry picked to say I should be ok by now.
I know i am in a fairly good position as I don’t have the physical drawbacks many seem to have and i am grateful for that but I believe we all have the psychological affects to haunt us and try to manage which in this particular bad patch is really hard.
I am sure in a few days time I will be over this down turn and on my up again, which I am sure you will all understand. Life goes on and i wake up every morning which I Am grateful for then I tick it off as a success.
Hi Chris
I too had a stroke during covid, one day your off to work in the morning and the next you’ve had a stroke, and everything is turned on it’s head.
Fortunately I have no physical scars only emotional ones, scared if there are a lot of people around, anxiety when leaving the house etc…
I’m lucky enough to be able to give up work, I couldn’t have gone back to the job I did anyway as my concentration skills don’t seem to work in the same way
I had really good support from the neurological people, far better then Doctors, I had 10 sessions with a lovely lady who explained where the stroke had been and what it effected in my brain, I had tests to do and then afterwards a written report of everything that the stroke had done was sent to my doctor, unfortunately the neurologist was leaving so I had no more meetings with her, when my doctor wanted to see me personally, only because when I spoke to her on the phone I ended up in tears, she has increased my anxiety medication and put me forward for some more counselling, so I rang them up, this was during covid, and they had no free appointments, so I didn’t bother chasing this up.
Now I’ve had a review on my medication and they’ve put me in touch to see a mental health nurse at my surgery, so now my anxiety is up again because I don’t know what to expect.
Oh well at least we are still here, and the summer weather has been wonderful
Hi, it’s a strange feeling isn’t it, I get the same thing, in the mornings I have boundless energy get the hoover out and within ten minutes I crash, it’s so annoying,one afternoon I cooked lunch for my husband and son, roast chicken, stuffing, roast veg and potatoes, and I thought this is great I can do this, only problem was as I was dishing out I just burst into tears, I was so worn out but I wanted to keep going so I’m shouting at them to sit down as they all wanted to help me i was getting hotter and hotter and it just spoilt everything and reminded me that I’ve had a stroke
So lesson learnt, even if I feel energetic still take little steps that way it won’t creep up and bite you suddenly
I am qt months in had a bad case of fatigue last weekend. I thought I was coming out of it but I think I am now back where I was 12 months ago. I live alone with my cocker spaniel and I just keep crying because I can’t give him what he needs and he is worrying about me. My only chance to see my 1 year old grandson is to do daycare but I have done that 1 day a week since May and thought I was doin* well but now it’s caught up on me and I will miss him so much if I have to stop
Thank you Lorraine. It is so good to know others have the same issues and feelings
Hope things have improved, I am 18 months on since my stroke, fatigue kicks in at the back end of the day but as I am not really back to near normal I cannot compare to my old self.i would always suggest following your body’s message s if it is tired you will need a nap, I have several naps daily, it keeps me going. Good luck
Sorry to hear that you had a bad few days try to rest not easy with grandkids lol take care with kind regards des
Hi, I’m 5 mths from a stroke and 3wks from TIA and I find tiredness wipes me out on lots of days. Socialising seems the worst because you can’t just walk away and stop or people think you are rude and no one seems to understand the kind of tiredness strokes bring. It means staying with friends, holidays etc are pretty much a no,no. People say take a nap, or go to bed earlier or don’t do so much, all of which makes no difference. I try to set myself specific tasks like cutting the hedge and do as much as I can manage. That way if I feel tired then I think I’ve done some exercise, and achieved something otherwise I can feel down at lack of progress.
@cutler662 sorry to hear you’ve recently had a TIA on top of having had a stroke. I get what you say about fatigue & needing to feel like you need a reason for it.
I get a lot of fatigue & like you find socialising exhausting. I did though leave a gathering early at the weekend as I just couldn’t cope any more. Mostly they understand so don’t ever be afraid to leave if you need to. I do pick & choose what I do where I can though.
Hope your fatigue starts to improve soon.
Best wishes
Aye, we do need to be more judicious with our activities.
Lorraine, I also appreciated Mahoney’s picture. I am two and a half years post stroke. I have good mobility - people say they can’t tell I’ve had a stroke. But I have post stroke pain which is sometimes difficult to cope with. I had no follow-up after my stroke, just before lockdown, and when I phoned the stroke team where I had been in hospital, I was told to ask my doctor for neuro pain killers, and that I might always have the pain or it might just go. I was recently sent for physio where I was told to ride a bike for three months and then the pain would be gone. Don’t really know what to think about it all.
Mary
I’m going to print off the picture and give it to my GP as it just about sums it up. I don’t expect him to do anything about everything on the picture but we’ll perhaps take one thing at a time just as the symptoms seem to. Strangely I’m not tired this week but my balance has gone completely up the pole, not helped I’m sure by trying to clean under the bed and finding the remains of at least two poor creatures under there - horrid cat
@FionaB1 our cat used to bring presents like that home too. Always finding half eaten things in random places. 
Hopefully when you show the pic to your GP they’ll start to help you more xx
Hi Mary – I don’t know if this will work for you, but, have you tried CBD oil? It helped with my spasms, and many people say it helps with pain. 
Jeanne
Hi Mary – I don’t know if this will work for you, but, have you tried CBD oil drops or gummy bears? It helped with my spasms, and many people say it helps with pain.
Hi Jeanne, no I haven’t tried CBD etc. I looked on the NHS website about CBD yesterday after seeing your message. Left me not sure about it and thinking I should discuss it with my Dr if I was thinking of using it/them. But thanks for replying. Mary
Yes, I guess the interaction with all our other medications is what bothers me. I suppose I would find it helpful if someone could tell me what to expect from the post stroke pain and if it’s possible to ‘do’ something to get rid of it. Mary