Hello Community,
I’m in a difficult situation because it looks like I had a stroke many years ago which I lived on with thinking it was a mental health illness. I lived for 16years basically going round in circles. I ended up deeply traumatized.
I was pulled into treatment and recovery which has been ongoing for 2 years now. I’m on the better side of a deeply traumatic experience mainly because of the length of time it went on.
I am in touch with NHS support services. But for me personally I’m finding it very difficult in terms of what help and support I need.
I would appreciate any advice or help from the community.
Thanks
Tim
2 Likes
@Tim1W Hi & welcome to the community. Sorry you’ve had many years of living with a stroke you didn’t know about. Now that you’ve got a diagnosis I hope you are getting the treatment you need.
It’s very difficult to advise on where you can go for support without knowing what your specific issues are but some general pointers as a starting point may be
GP for them to refer you on
Stroke team
Neuropsychologist to help you work through your trauma
Physios
Occupational therapists
Specific services relating to your own needs
You could ring the Stroke Association helpline who can talk you through available support in your area. 0303 3033 100
You could also see if there are any support groups in your area.
https://www.stroke.org.uk/stroke/support/groups
If it’s financial support you need then speak to citizens advice as they can talk you through what benefits you may be entitled to.
For help around the home try your local councils adukt social services.
Hope some of this is helpful.
Best wishes
Ann
2 Likes
Hi @Tim1W
Welcome to the community, I’m sorry to hear about your stroke being misdiagnosed and that you’ve been living with this without knowing for so long. I hope now that you have a diagnosis you’re able to get the help and support you need.
I think @Mrs5K has covered a lot in her message, I would second what she has said about calling our helpline, which she has provided the number for. Our helpline will be able to discuss with you what support is available within your area and can also be there just to listen to you too.
I’m sure some other members will be along shortly to share some of their experiences which may help you too.
If you need anything whilst you’re using the Online Community, please don’t hesitate to tag me using my username and the @ symbol.
Anna
1 Like
Thanks both of you for information and understanding. I didn’t know how much detail to write. My experience scares me and I think it will scare other people so I’ve been bottling it up.
It would be helpful to get some definition on what is a stroke. What I experienced all that time ago was something like being switched off, supply lines being cut up the left side. I didn’t lose any physical mobility it was brain and mental function, managing, speaking disappeared. Feeling of something closing up. I think my nervous system may have been damaged or tired out from stress. Something inside said that’s enough, switched me off. I thought a stroke involved loss of muscular mobility.
I’m still getting a feeling of fatigue on my left side like something being slowed down. It might be good just being able to talk without worrying of scaring people.
Tim
1 Like
@Tim1W it is very difficult to define what a stroke is because it is so different for everyone. The Stroke Association use the term FAST (Face, Arms, Speech, Time). Others use BEFAST (Balance, Eyes, Face, Arms, Speech, Time).
Here’s a link to the NHS definition of a stroke.
A stroke can have physical affects but it can also cause cognitive, memory, speech issues for example. You don’t necessarily get both of those so it could be you just had tue Speech/ cognitive issues.
I’m not sure from what you have said whether you have been diagnosed as having a stroke. If not, an MRI scan might be worth looking into as even if it’s an old stroke if will often show up on an MRI.
You can write as much or as little detail on here as you are comfortable with. Rather than writing all the detail you can perhaps just add an odd question or 2 which people may be able to help with.
Best wishes
Ann
2 Likes
Thanks, it’s helped just to get the experience out in words. I haven’t been able to do that before. It’s a good sign of progress.
Thanks
2 Likes
Hi @Tim1W
You may find it helpful to sign up to our Online Activities. We run a online session called Me and My Stroke where we talk about different topics over the space of four weeks. The first week is all about what a stroke is and you can share your experiences with others who have had similar experiences.
You can find more about our Online Activities here and sign up should you wish to.
Anna
Maybe start small—focus on what feels hardest for you day-to-day. Is it processing what happened? Regaining confidence? Or maybe reconnecting with the things you enjoy? Sometimes it’s less about figuring it all out at once and more about taking it step by step.
2 Likes
I’ve definitely had a sudden hunger for books.
I have been encouraged to follow the feeling of enjoyment
New knowledge
Tim
1 Like
Is anger common with post stroke?
I keep getting anger slowing me down
1 Like
A change in emotions is very common post stroke. Have a look at this leaflet it might help explain it a bit.
2 Likes
Yeah, totally normal. Post-stroke anger hits a lot of people—it’s like your brain’s healing, but it’s messing with emotions at the same time.
Plus, not being able to do stuff the way you used to? That’s frustrating as hell.
2 Likes
It’s good to know what is normal with a post stroke conditions. My recovery has gone well but I am getting strange ups and downs. Constant anxiety feeling.
Good to know
Thanks
1 Like
My anger is connected with being basically turned into a moron by mental health services as I disappeared into stroke then left on my own for. On a few occasions I managed to verbalise the amount pain and discomfort I was experiencing but no one took it seriously. I was left on my own in extremely pain and suffering. I was given a 1 way email support to the Samaritans that no one ever replied to.
Now I’m having to work my way back through all the damage I was caused.
The anger is really powerful no sign of it letting up yet.
Definitely helps when you have the right level of information.
Sorry, just needed to share part of my story today.
Happy boxing day 
1 Like
Sorry only just seen this.
Are the online activities typed/written or Zoomed?
My social speak level is only just returning. The anger I’m currently going through is making it nearly impossible to speak at time.
Hope your Christmas is going well
Tim
1 Like
@Tim1W as @Anna_Moderator is on Christmas leave I thought I’d take the liberty of replying. The online activitites are via zoom. They have me & my stroke sessiona where you can share your story or just listen to others stories. They also have quizzes where you answer multiple choice questions. You can write your answers down or if you’re not able to write you can hold up letters to indicate your answer & they’ll keep track for you. You can just listen in if you prefer. It’s very informal and friendly. You can have someone with you to help if you want. They are very used to helping people with speech & writing issues.
I fiund it a great help to me initially after my stroke.
You could give it a try and see what you think. There is no obligation to return.
Best wishes
Ann
1 Like
As @Mrs5K says, try it and see. Its not about how you sound or apprear, its about you and what you may get out of it that matters most.
Remember, anyone who appears on these zoom session have all had strokes. They are debillitating for everyone there, physically, cognitively, visually, orally, to name but a few issues.
But those zoom sessions could help you, if only psychologically. You don’t have to speak, just observe; you may eventually participate more as your speech improves.
The same all goes for any local stroke/aphasia group you may join. You’re not alone now, you don’t have to be alone. Its just a matter of taking that first step in the right direction for you.
The more you read on here, the more you here of others experience and what they went through, the better you are armed to cope woth your own experience.
You’ve certainly come to the right place to regain your sanity 
Did you have a stroke 16 years ago or 2 years. I wasn’t quite sure of your timeframe, but that could just be my stroke brain tireing, wouldnt surprise me there 
2 Likes
@EmeraldEyes. It looks like I definitely had a type of stroke in 2006 or 7. I’m still reading through types of stroke mine may have been higher functioning. I didn’t lose any muscular mobility apart from left side of face even that was minimal. Because of that I was able to carry on when I should have been straight into hospital. Also because I’d been incorrectly diagnosed with a mentall illness instead of 'You need a period of rest and recovery" I ended up very confused. Its a horrible story from my point of view.
So, 18 or so years later after a 2year guided supported recovery I’m still coming back.
I had my sister telling me over Christmas that it doesn’t matter what it was, stop going over the past etc. For me it’s important to be clear what that was. It messed up my life apparently no one had noticed from the outside which I find riddiculous and very hard to believe.
Moving on is slow and gradual
1 Like
@EmeraldEyes is it the keep on keeping on group?
1 Like
Happy new year everyone!
Just want to share the anger stage of recovery is intense. feels a bit like an emotional catch up.
Tim
1 Like