Sticky Blood-Hughes Syndrome Support
8,500 members8,639 posts

Post-stroke fed-up ness NOT depression

Dear all,

Ben feeling propper fed up recently - stroke was 2 1/2 years ago almost and INR largely satablw since then. Been back working full time from June 2011 (stroke was \nov 2010 when son was 7 weks old) -but now at a stagew when just feling tired and a bit defeated by trying to do evereything -not helped that 2 1/2 year old is at fulltime nursery and has gets every infection going.

Anyway, upshot is really wanrting to know if anyone else in easy reach of Leds/Harroagte|?ilkley has had a stroke and wants to do a meet up? Have struggle dto find anyone who can reltae/understand. I don't fel the APS to much, or at leats ond' think that I do; full timr working mum in stroke recovery: can't tell whgihc bit of what I feel is sue to what....

so bit fed up o fbeing isolated fomr the world at large whohc pities/sympathise but cn't actually understnad what it's lik trying to get on and be normal when ou've only got hlaf a brain to do it ith.

PLs PM me if anyone out there who's alos had a stroke could gfancy a meet up.


10 Replies

Hi Eliza, sounds as though you are doing pretty well and making a good recovery generally although I do appreciate it must be terribly hard with a young child - when I have my grandchildren for the day it floors me and I like you am now post-stroke 2 years.

So well done for your achievements, be proud of them. I do hope you manage to find some local support as its great to have people who understand what we have gone through.

Have you tried contacting your local Stroke co-ordinator or association who may be able to put you in touch with somebody?

Let us know how you are getting on. xx


There is an organisation called Different Strokes which is specifically for younger stroke victims. Might be worth contacting the

Wishing you all the very best


Hi there, sorry things are so tough... I also can imagine how it feels having felt very rough when my children were very young, and I did not have a stroke. But the chronic fatigues the varying states of our condtion(s) can bring on is awful, let alone the aches and pains and any residual disability. Hopefully having given your location, perhaps you there will be others on here who might want to meet up for a coffee or something - I find that solidarity with others can act as an energy boost. Best wishes.. please keep in touch. Mary F x


Hi I have APS, Sjogrens and fibromyalgia but fortunately I have not had a stroke. But I have raised 3 children with all that and I am just about 25 minutes from where you are. X


You have written my thoughts exactly. Thank you for sharing. Having my last stroke April 3, 2012, I have a 2x3x4 cm piece of dead brain tissue in my head. I feel useless, tired and done. Done with the Coumadin, Lovinox. I go for INR tests 1/2 as much as called for.

If you find help or an answer please share with me.


Fascinated to learn you know the size of your dead tissue, and really sory you feel the same way as me. I am v lucky in having a very supportive OH and dhave done as much reading as I acn about he side of my brain that's gone then try to make sense of it all - othewrwise I just try to slog on. Have found an FB group devoeted to oen of my frivolous intersts and that is helping -lots of lovely nonsensical people poasting lots of fun distracting nonsense. Have also realised this wewkend how much I need quiet alone time as th part of my brina that's ogne deals wiht incoming info and I hate being in busy noisy environments (work in a school so its dificult to escape it). Anyway, if you wnat to chat more, friend me on facebook - eliza ekstein) or PM me here


I feel a little better ths week after increasing Clonazipam. I found a good bok tha I just finished.

Will in the office, and to block distractions, I wear ear plugs and headphones playing white noise. As you can see I don't check in often.


Eliza - did you watch "Rupture - Living with a Broken Brain" the film Maryam d'Abo made about her brain haemorrhage and interviews with other stroke victims? Im not sure if you can still get a copy but Ive watched it a number of times it helped me so much. The descriptions she uses and which are echoed by the others, can only really be something that stroke survivors can attest to. I had struggled to put certain feelings into words but after watching that program everything fitted into place as she had done it for me. It also helped my other half to understand how I was feeling too.

I can certainly understand your need for quiet time so your brain can rest. I have the same need although that aspect has got a little easier so perhaps it will for you in time as your brain heals and remaps.

Ive recorded the above program and if I can ever find a way to put it on a disc I will let you know!


Hi there, I know what you feel like, it seems as though no one knows what is wrong with you when you speak with family and friends. Im fairly near you, live in Middlesbrough, could meet half way for a coffee...I think there was another lady that popped up aswell near you. lets all meet somewhere....let me know...Elaine x


I was the person who also popped up, I am just about 25 minutes away from Eliza, on a good traffic day it quite easy to get to.


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