I'm very much alone, even though I'm married.

First time writing, honestly don't know where to start, apart from I'm very alone, either though I'm married. 6th January this year, my life changed forever, had a stroke and life will never be the same again. Over the following few days, tests, tests and more tests, as you all know, and what brilliant care I received, can't fault it. Had an operation on my neck,after they discovered the artery was blocked, gave up smoking that day, and the recovery started. Was very fortunate to have six weeks treatment from the early stroke team, fantastic. Had the most wonderful stroke nurse , who I would have loved as my birthing partner when I gave birth, honestly I couldn't have done it without her. Anyway to cut a long story short, I am now discharged from vascular surgeon, stroke team and all on my own, was coping fine but now, BANG, I've hit the biggest brick wall. Hubbie had been wonderfull, cooking, cleaning and trying to understand the brain injury that I'm left with, only being able to do one thing at a time, only processing one thing at a time, but I feel he's fed up of it and he often provokes me for a reaction, like I have a certain way to change the bed, not the right way, not "my" way, just the way my brain does it, so he admits to thinking, bugger that I will do it a different way. Might sound trivial to anyone else, but is major to me. He knows I have weekness to my left leg and arm and can't do everything that I done before, I hate asking for help. My god I'm waffling on, just hoping people who have been threw this process might be able to give me some advice. Lastly the cravings for a roll up are driving me up the wall, had nicotine patches, managed fine for weeks but now with every frustration and disappointment, leaves me desperately wanting "just one" ciggie, did any of you have this, just feel I'm all alone and no one round me understands. I'm not usually a "doom and gloom" lady, just need to know other people are in the same ocean as me,rowing their little boats to a better place. M x

Pink Rose, Welcome to the forum. You can express yourself freely here or just rant and rave as you wish. Firstly, you are in the very early days of recovery and still feeling the full physical and emotional effects of stroke. Whilst it is true that your life will never be the same you do still have a life and things will improve.

My stroke, four years ago, was devastating. I went from being what I thought of as a fit person to someone who couldn't walk, tie shoe laces or do anything very much with his left arm. My partner was equally devastated and declared on my return from hospital, 'We have nothing to look forward to'. That depressed me too, but I have great determination and will power. Bit by bit, I got walking again with a stick, tied shoelaces and began trying to cook again. I graduated to changing a bed, doing a small amount of ironing and using my weak arm and hand as much as possible. We can even now go on short breaks.

That said, it used to irritate me no end in the early days if my partner cooked things differently or put pots and pans in places where I would never put them. However, I learnt to count to ten and sneak them back into their proper place later. I also learnt to cope with my own moods and now I never let them get me down. As for my stroke after affects, I take the attitude 'It is what it is'. I can't reverse it, but I will not let it get the better of me.

Please use your own determination and will power to move on. Your little boat isn't sunk yet,Lady, so row on.

Your brain has suffered a major trauma. You can't recover in 4 months. If You had broken your leg would you be running a marathon now. Stroke recovery is a long process over years and you will have to learn to be kind to yourself.

Janet 

Thank you for your kind replies.didnt realise I was stil in early stages of recovery, must find some more patience from somewhere. Huge changes to a human body, that only fellow stroke survivors can understand. My biggest change,apart from obviously weekness is my brain does not seem to have a filter or off switch. Pre stroke I was a very quiet person, yes sir, no sir, three bags full sir, but now this voice keeps coming out with words I've always wanted to say but held back incase of offending , they just roll of the tounge so easy now, to hubbies dissmay haha. Anyway thanks for the advice and I will continue to read all of your experiences and stories.so nice to feel I'm not as alone as I thought. You have all done so well with your personal journeys and goals. Marianne x

Hi Marianne - I’m sure all of us know that feeling of impatience with our recoveries. Having naively assumed I’d be back at work in a couple of weeks, it took me a while to accept that my recovery would take some time. Acceptance isn’t something that anyone can tell you to do, you just need to get to that point yourself. You will.

It is hard when you’re trying to explain things to people who haven’t had a stroke, even when they're a supportive family member. In response to lockdown, the Stroke Association is setting up a new support service that will be delivered by telephone. Stroke survivors and carers will be helping deliver this by using their 'lived experience' with people who have recently had a stroke (or become a carer for someone who’s had a stroke). If you're interested in this you could give the helpline a call and ask to be included. 

You're definitely not alone. Take care.

Welcome Pink Rose.

I will just say that doing things in " your " way, I fully understand.

I used to winge a bit about the way the towels were folded up and put in the airing cupboard. But because I find it hard to fold them correctly myself, I have had to think to myself " does it really matter" and the truth is No.

Good luck and keep rowing your boat, you are not alone.

Julie

I know only too well the "just one more ciggie" request from the brain!. I gave up twenty years ago after a short time in a cancer hospital ward where they were checking whether or not I had lung cancer. I didn't, but the experience of four days surrounded by dying people made me give up 'cold turkey'. I was mainly a pipe smoker and hid in a bottom drawer my pipe and a half a pack of tobacco just for emergencies. It was two years before I found it again and I wondered how I had put up with that stink for so long!

My experience retrurning home after the stroke was different. My wife of 54 years knew that I was too stubborn and proud to be assisted so made it a rule not to help me unless I asked. It must have been extremely difficult for her to watch my fumblings with buttons, table implements, cups and life in general but she stuck to her plan. Realising that a stroke has a devastating effect on both partners of a marriage, I insisted the she carried on with her own social activities of Red Hat meetings, scrabble and card clubs but got out of joining her at the Quiz evenings since I was useless at it anyway, She was allowed to carry her mobile phone in case I needed her urgently.

I'm now in my sixth year of recovery and our 60th anniversary is approaching. It is staggering how many problems we have solved between us. Now, I know this reply is not going to help you much because our situations are so very different, but it may comfort you to know that things can and do change.

Deigh