Lessons I learnt from my stroke

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1

1.  It can happen to anyone: young, middle aged, elderly, men, women, children .

2. When it happens you are ‘out of it’ for at least a week. I experienced a sort of out of body experience.

3. Your emotions are shot. My first reaction was fear and anxiety and that lasted several weeks.

4. You can become ‘hospitalised’ very quickly. My first time out of hospital made me long to go back.

5. You need to draw on all your strength and determination to recover. I had overcome many challenges in life so knew I had to overcome this.

6. It ‘s like being a child. I had to learn to stand, walk and tie my shoelaces.

7. Recovery is slow. You think it will take weeks, but it takes months to make even modest progress.

8. The brain is both remarkable and deceptive. I had dreams where I was my old self...running, jumping etc., I also found my brain could bring back what I thought of as ‘natural’ functions eg putting your coat on in a certain way.

9. You learn who your friends are. People you thought you knew can be quite uncaring.

10. Never give up. You do not know how far you can improve so you have to keep on trying. Mishaps will happen, falls are likely, but the more you exercise and work at it, mishaps will diminish.

11. Post stroke fatigue is daunting but eases. Mine hasn’t gone, but I can cope with it if I rest when it comes on. Too much conversation or physical activity affects the brain’s ability to cope.

12. Life is precious so live it to the full. At 75 my time is limited, but I ain’t going quietly and I’m certainly not going to down and dwindle away in despair.

2

Thank you John for your ‘lessons I learned’ post. I can relate to lots of the points you have made and am sure others will do the same.

For me the hardest things to get used to have been stroke fatigue and the emotions that lots of us seem to have. I’m seeing a neurologist psychologist on the 20th of this month so am hoping to get some pointers on how to control the emotional side caused by the stroke which for me is the hardest thing to deal with.

I had a set back the other day so am struggling a bit, trying to be ok when I know I’m not if that makes sense. I’ll get there in the end I’m sure.

Ann

 

 

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Ann, setbacks are common. Three years on I still get them. The only thing you can do is battle to get through them and/or seek medical help if necessary. I have found gps do not show much concern for your stroke experience after you are back on your feet and back home. Hope things improve for you.

4

Dear Ann

Setbacks are par for the course. I try to look at my position a week after a set back and then I grasp that slowly slowly I am grinding forwards.

The emotionality has eased away nicely without much effort on my part. But SF is another story. Boy how I have tried to get over SF. Well last thursday, for no apparent reason, the SF eased. Its not gone, it has just eased a fraction. Life is a lot better after that tiny improvement. I am getting so much more done in a day.

Keep plugging away. 

Colin

5

Thanks John I am hoping that I’m over the worst of this SF episode but they do seem to be more frequent these days. I used to be able to shake them off but find I have to rest more and more.

My GP has changed the way we get repeat prescriptions and we now have to see the practice nurse for BP checks etc before repeat prescriptions are given (hope it’s not every time you need a repeat prescription) and I think this is what’s caused this setback, it’s a pain having to be seen when it’s not really needed but I guess I’ll have to go along with it. 

Ann

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My episodes of SF have been very mild but this episode has been pretty bad.

I think it’s due to having to go to my GP’s to see the practice nurse before I can have my repeat prescription. I got a letter from my practice which basically said if I didn’t see the practice nurse I wouldn’t be able to get a repeat prescription, not what you want to see when you are a bit down anyway. It’s a standard letter which everyone would get.  I’ve been so annoyed about it which makes me feel generally stressed, in turn it makes my tinnitus increase which you know is something I’ve struggled with.

We’ve been out to the coast today which was nice, helps to lift my spirit and the SF to some extent.

Glad to hear you are keeping well and the SF has eased a little.

Ann

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Dear Ann

At the risk of repeating myself (thats a big problem for me, I dont know what I have thought and what I have said) I think us SS need to get our BP/pulse under control and then get our sleeping pattern sorted. Easier said than done, but if I dont get my 7.5hrs sleep then I have no chance with SF.

Many of us get some level of frustration and perhaps thats  getting at you  (?).

I do approve of relax groups and my village has a course starting in two weeks. Its yoga for beginners with relaxtion inserted. It is aimed at those of us who cant stand or lie down with ease. It is just what I have been looking for.  So those of us who live in Tendring district, marooned outside the mainstream, have an alternative. Happy days.

Another silly little thing. My tinnitus relaxer is very cheap but it does go through batteries quicker than expected. So this week I acquired a 6v transforner so I now plug in to the mains.

I have also learned that one local ordiologist proveds a pneumo suction in your own home. At £60 its not cheap, but its a decent option. My surgery still offers the water syringe option and thats what I use. Tinnitus is so annoying. It gangs up with its mates in my brain and happily works away at all sorts of discomforts. This month its my right hip and right leg that are getting the phantom stroke attack. Very easy to assume I need a hip replacement, but I bet its a stroke thing. 

I do go on. And there are seeds that need sowing and weeds that need my attention.

Colin

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Since my stroke, I don't know how I survived. Sometimes life is very hard, and you wonder about future.My wife has been wonderful with mood changes and life in general.The Stroke assoc have been good to me when ever I phone about a problem, they sort it.As for my stroke journey ,I could write a book. I hope you all get well soon. Len .

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When I am tired and don’t feel good- quit and rest. Also, the PT people told me to

do my PT exercisesall the time to  stay strong. They are right, just haven’t been able to get it done regularly.

10

You have a great attitude! The other day my brother asked me how I was doing with my new normal.  That statement brought it all together, I have finally quit trying to add past activities to my day. I just can’t do those things. So I do what I can, such a relief to near those words and understand they fit ME!

11

I agree 100% - no point pretending you can 'carry on regardless' if you don't feel right, as you might have done pre stoke.  REST is GOOD.   Pre stroke I didn't stop but now appreciate how much benefit, even in the middle of a  big project (decorating, gardening in my case) rest can give.  

Excuse my ignorance but PT???  Is this Physiotherapy? 

12

Keep positive Ann. Johns post is great. Jx

13

My own experience is much like others and now 12 months after the stroke things are getting back to normal. I'm not there yet but I'm feeling more positive about the future. I thought that I'd be better in a few months, how wrong is that? However time is a great healer. You've got to keep pushing and be as strong as you can. Nobody knows, or can tell you, how long it will take to get better, but in my case, though still not 100%, I can see a welcome improvement and look forward to the future. 

14

Hi had a stroke in November last year ,at first i couldnt speak ,walk and lost movement in left arm , six months on i can walk ,having speech thearpy and physio on my arm , its been a struggle ,i suffer from anxity and lost confidance ,NHS have been great ,thought i would have come back sooner but realise it is going to be a long road 

15

Its a long slow journey. Keep at it as gently as you can. You seem to have made an excellent start on your journey to recovery. 

I love it that you are already saying what you can do rather than what you can not. And you have joined us survivors, many dont make it this far. We have.

It is so important to be positive.

And to smile a lot. So please smile whether its false forced faked or real. It really does work.

Lots of us are here for you.

Colin