Feel so lost

I had a right side stroke May 16 and have been doing well and returned to work part time 10 months ago
so I tell myself why am I feeling so down when things have improved so much, I don't even know how to put all the small things in words really, that make me feel so lost and lonely
People say you look well are you better ? Things are expected of me at work that I can not physically do, because I look ok. I get so dam tired and have to have a sleep when I get home and have leg arm and head pain. Everyone seems to have met someone who has had a stroke, fall illness who has got completely better by now, as if I should have made a full recovery. Perhaps I should have recovered my sight and memory by now. Life seems such a struggle at work, I have had to disclose personal dis abilities to managers younger and of the opersite sex just to justify using the disable toilet and the time it takes me. My desk is quite away from the toilets and so is quite a trudge with my crutch to get there, I feel so isolated and lost with this stroke I say I have had.
I took in leaflets from the stroke association outlying my disabilities when I started back, but I feel it is arunning battle all the time to get and even keep any reasonable adjustments Having to explain myself all the time feels so humiliating and degrading sorry I am feeling so down and lost
Maybe it's time to pack up, but still have 8 years to retirement so then what do I do
That's it moan over,
I am sure you have all heard a lot of the same things, it's just life can be made so difficult sometimes

Joy, Welcome to the forum. I have not had to return to work after my stroke, but others on this forum have, and will advise you. What I have experienced and still do, is the 'you look well' comments or 'you're amazing'. I am not! I still have post stroke fatigue, eighteen months on, and have to sleep every pm. Walking is still a great effort. I will let others respond to your work situation, but I wish you well.

I am just embarking on the return to work journey. Totally get your frustrations. Boss is supportive at the moment (on prep for return to work, so although I got in for a few hours a week as part of the recovery I am still off sick). Trying to get them to understand that the normal 6 week phased return outlined by occupational health may not work with brain injury/ stroke. Think I am just going to leave it for occupational health and vocational services to work it out. Vocational services are used to working with stroke survivors and our peculiarities-will let you know how it pans out.

Dear Joy
Welcome back to the forum.
Your post cheered me up. It is good to know that I am not alone in the post stroke aftermath. I have a few cherished online friends who remind me we are in the same boat, but its nice to hear from someone extra.

It is of course quite disgraceful that you have to jump through hoops at work. I presume you have no union rep to put your case. Honestly, workplace situations have gone backwards for the past twenty years. We are a nation so much richer than before, with technology and knowledge that should make life so much better, but the workforces are often treated much worse than when I was "the boss" in the mid 1970s. 100 staff reported to me but the sort of thing you go through would not have happened on my watch. I employed a female assistant whos duties included dealing with female problems on my behalf. Simple. It worked. Staff were generally very happy.
And I didn't need to get in to some personal matters with female staff. I suppose this is gender crime nowadays.

I have been looking for someone who is at my stage in recovery. Mine was December 2015. I have found lovely people on this site but no one in the flesh.
I had a fast physical recovery but the mental stuff seems poor for me. Yes the "look well" thing is a problem. They can not process looking OK as unwell. Its almost impossible for them. We should all emigrate to the Isle of Wight then we would all have an understanding. Your walking aid is, in this respect, a plus point. At least they can see your legs don't work 100%.

You have done better than most of us. I can not imagine trying to do a days work. Or even a half day. I would crumple in a heap within two hours.

Is it time for a re think ??
You are not the same person as pre stroke. Do you maybe need to take more notice of the new Joy ? This aspect of recovery bothers me a lot. I cant relate to other people. I try to make new friends but the "new me" is inconsistent, still learning the ropes.
Maybe early retirement ? I am retired and an error of my judgement was that I don't need as much money as I thought I would. I retired one year early, at 64, and wish I had done it sooner.
I would hope, for you, that you could do reduced hours for a few years. Then retire to a new life.

All the odd things that you refer to. Yes, me too. The only way forward is to take each issue one at a time. Boy its difficult. Is it the medication. Was I like this pre stroke. Is it ageing.

Do come back and let off steam. We are so isolated, best thing the internet has achieved is this forum.
Good luck

Thank you for your post Joy. I guess the 1st thing that struck me was the date. 1 day before mine on 17th May 2016, that day will remain with me forever more. I haven`t been able to return to work yet but its decision time for me very soon, by November at the latest and unfortunately. I have thought about the possible struggles about things like just going to the loo and Im dreading it. It isnt just the 30 second task it was before, but like you say, how can you go into detail with someone much younger and not really aware of stroke issues. Like you, I think I look well and walk with a crutch, but thats all people can see,not the inner turmoil going on in the head and how the simplest of tasks are now virtually impossible. Ive looked into `ill health retirement` but Im 10 years from retirement age and I really dont think the income will even cover gas, electric, water, council tax etc etc, and can`t visualise struggling on for potentially a lot more years on the bread line. Ive worked every day since school and its scary to even have to contemplate the future. I guess I will have to strive to carry on working and just do my best. Whats the worst that can happen ? I have never worked in an office environment, but that will be the only option now. I have started to try some very minor admin work at home on a volutary basis, but its hard, so i cant imagine what it will be like in a large open plan, loud office environment, theres only so much a `stroke brain` can process and what is a lively atmosphere for a `normal` person, will be totally overwhelming for me. Any advice that you have would be gratefully accepted.

Hi all
Thank you for your replies, sorry I was really down this morning
I have been out in the cold sunshine and feel a lot better,
Huntspete if you are thinking about returning to work the Accesstowork DWP website is great, I have had help with a highbacked chair foot rest and special software as I have limited sight also I get help with travel to work as I can no longer drive this has been a tremendous help and I am sure that I wouldn't have been able to return without their help
Perhaps working in a smaller office would be better as well for you
I work in a very large open plan office and find this with the noise horrible
Good luck with your return, I do know people who have returned happily and safely I have been told a supportive employer is a great asset

Hi I had a small stroke in January this year so I'm still trying to come to terms with everything. I know how you feel family & friends look at me and tell me how well I'm looking, but they have no idea about what is going on in my head cos some days I don't even know myself. I have the fatigue & you try to push yourself a bit more but it just makes you feel worse. As for all the trips to the loo, can be tiring but when you need to go you need to go. I try not to look in the mirror cos I don't see myself anymore all I see is a stranger looking back at me, cos it has taken away everything, I can't even have the purple hair that I had had for so many years. I tried to dye it 3 times & every time it lasts for 2 weeks then my hair throws it out. Life really isn't easy after a stroke and the only people who really understand what your going through are people who have also had a stroke. Today is my first time looking at everyone's post's, I was having a crying day but I felt a lot better after reading some post's cos I understood exactly what they were sliding. So it really helped me knowing that there are other people going through the same as me. In my opinion as long as you are doing your work & you are happy doing it don't let other peoples ignorance get you down.

Hi I just read your post & wow you summed it up perfectly.

Hi purpleaudra I feel for you it is and can be very frustrating that people don't understand and sometimes it comes across because you look well then you are well. The way I try and rationalise it is how much did I know about strokes before I had mine which is almost 2.5 years ago and the truth is very little.

No one has a clue all the different things we go through but we survived and that means we have a chance to recover. ..some are not so fortunate.

Some days even now I feel I'm constantly having to monitor my energy levels to make sure I get through the day. The best advice I can give is if you feel fatigued then rest, in my opinion it does no good trying to push through it you just end up feeling worse.
I really do wish you all the best and please don't feel alone there's always someone around to chat to.
Rachel x

Hi Rachael 2405 ,thank you for your reply.becouse other people (who haven't had a stroke) can't understand what you are going through, makes you feel so alone, it's as if they take big steps away from you . So that's another thing you have to deal with. But I was so glad I found this forum yesterday as I was reading what people were saying & I felt as if they had been in my head & were writing about me, & it helps to know that what you are going through other people are going through the same. So I'm not alone
purple audra x




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