Had a guts full

Hi everyone I had the stroke nearly 3 years ago at age 49 and still dont have much use of my left side and to be honest sick of it worked since leaving school repairing cars loved my job now cant tie my own shoe laces fed up with people saying I'm lazy I've pushed myself to the limits mentally and physically and now mentally giving up I no people say be grateful for what you have been left with and not what you can't do but what you can do well to be honest it ain't enough fed up with struggling fed up with the fatigue the pain mentally and physically I want my life back my body is suffering on the right side now due to all the pressure I'm putting on it and yes you can say be grateful for still being here but I'm fed up with hearing that I want my life back 

I know exactly how you feel and feel the  same, but nearly 4 years on, it aint ever going to be the way it used to be. Like you say, the right side is totally over- worked and over-whelmed compensating for the useless left side. There are no answers, just go through the pointless routine day in and day out with no pleasure. Sorry to be so negative, just showing some people do understand. Get it off your chest. 

Hi Mark - Sounds like you really need some help with this. Are you still receiving treatment from anyone e.g, GP, physio, neurologist? Maybe a review of your medication too as some stroke medication can add to the fatigue and pain.  It's common for the non-affected side of your body to compensate for the stroke side to the point where it too needs attention.  I think the first port of call is your GP. Write down a list of all your issues, all the questions and explain to him/her that you are at breaking point and need help and referring to the hospital for further specialist treatment.  Don't be fobbed off - be determined. Take someone with you who will fight your corner with the GP just in case it gets too much for you.  I would also contact the Stroke Association to see if there is a Co-ordinator in your area who can visit you and assess your situation.  

It's coming up to that time of year when we all get the 'stroke blues' remembering past Christmases and how we were then.  Progress is painfully slow but does happen.  Stay strong and try and get your GP appointment before Christmas so the ball can already be rolling for you in the New Year.  Let us know how you go on. Take care.

Mark, We can all identify with the way that you feel,especially as your stroke was at the age of 49. You have also had sound advice from others and I think it is good that you have voiced your anger and frustration. My stroke was 4 years ago at the age of 72 and, at first, I hated the way it left me. Like you, I couldn't tie my shoelaces up, no matter how hard I tried. Then one day I realised I hadn't been doing it the right way at all. Even now,though, although I can tie them, it is an effort.

I also had terrible trouble with my right side as I used it to compensate for my left side weakness. I also used to lock my left knee joint rather than leave it loose. I had several falls two or three years ago and my left arm and hand had a life of their own. Even though I hate exercise, I have made myself exercise as much as possible and am still working to stabilise my wonky arm and to get into a more fluid way of walking.

Although I have never been called lazy, I was saddened by the fact that several 'friends' avoided me after my stroke, whilst others treated it as if I'd had flu. They tell me I 'look well' or I'm doing well, when I am actually still battling on. Fatigue sends me to bed for an hour every day, although I now feel I am doing more around the house.

However, you are young compared to me and you have lost the job you loved. I do not know what I would do in your circumstances. So, I will not give you any advice, other than to say, do check things over with your doctor as advised. Take care of yourself.

Hi Mark, I'm sorry to hear that you are feeling so low and embattled by the legacy of the stroke.  It's a great disappointment that in many areas of the country there seems to be zero support and follow up for stroke survivors.  Many of the people on this site have had to organise their own recoveries, finding exercise classes, and support for work or care.  Just knowing that you're not alone is reassuring, and you have been given some good suggestions by the caring community on this site.  The roller-coaster nature of stroke recovery is exhausting, and it's a shame that you can't give your body a rest, and that you feel under pressure to keep going when you probably need a break.  I would suggest that those people who have told you that you are lazy, have absolutely no idea what they are talking about.  Maybe you should direct them to this site and they can do some research.  To be honest it's ****** rude to say that and I'd be furious, ask them if they'd like to swap places with you, maybe that will give them food for thought!  

Keep in touch, we are thinking of you xxx

Dear Mark

Other people are hopeless. They dont have a clue. Only another stroke survivor understands just what you are going through. 

I have found a few things that do help me get by.

Accept you are not going back to who you were. Try to think about how you can be the new Mark. I have taken on the most basic and simple tasks, waiting on tables and a 5 hours a month voluntary admin job. I am an FCA so these more basic tasks are so far at the end of the work spectrum. But it does give a little purpose to my life.

I am taking yoga classes. These are "gentle" yoga, not the full blown stuff. Sometimes referred to as seated yoga. This has helped me so much. It is beginning to get my body to equalize. Having spent three years oblivious to the fact that my right side was crumbling under the pressure of my left side weakness, I am now getting it sorted bit by bit. And getting my "core" straightened. The leader of the little group is just fabulous. She has so many ideas about nerve endings etc. And simple things like mineral water (she even tells us which brands to use) and peanuts. 

I also accept that its only me that can get my recovery. Others might help, but its all down to me.

In the first year it was good to hear how we are the chosen ones who survived. But now that is a fact and doesnt need to be revisited. Ioften think its better to not say I am a stroke survivor, then new friends might be made.

I did like the local stroke group. Being amongst others that understand is uplifting. The stroke association dont cover my area but a voluntary grouop fill in. Their contact is on the GPs notice board. The local church is also a mine of information.

And that old virtue of smiling still works a treat. As does being positive.

A cat has adopted me and thats another thing I can do....look after my cat. Never had any pets before. But now I am at home every day then a cat is ideal, and good company. He doesnt mind that I have had a stroke.

As O&U pointed out, this time of year is possibly the worst. So I am watching the evenings get lighter even if the mornings are not.



hi Mark, totally empathize, I had stroke at 57,  managed to get back to work which turned out to be a hostile environment and I was eventually forced to leave, tho I wasn't allowed to say that. I am shocked at the comments you have had re being lazy. you don't want to keep company of folks like that! I have no advice, I am sure you have as much as you can take. I am almost 4 years post stroke. was always an active bloke with a great love of the outdoors. there is a profound experience of loss, and the bereavement is not a thing that one gets over quickly, if one ever really does. I was always xquite handy, and dextrous, but I now have no function at all in my left hand. there are days still when I weep with frustration. I want to be doing things but I can't. and the things I can do are frequently skewered by fatigue. I do think that this is what it means to be disabled. when I began to accept that as an identity I began to feel some relief. I still struggle with it though, because of course I can remember very clearly how it was before the stroke. I think becoming disabled through brain injury or via anything else is very different from growing up disabled because of the bereavement, not only loss os what one was, but also lost futures, dreams and ambitions all have to be thought out again from scratch. now none of us are going to live forever and I ain't young, but I had hoped for an active later life, and some proper way of completing my career such as it was, I never expected to be tumbled out of my job unceremoniously and trashed in the way I was. so I suppose the most I can say is that I feel your pain. I live it every day like you do.  sure there is much to be grateful for but there is much to grieve for and that is serious work.

there will be better days.

thanks for posting 

all the best