19 weeks post cerebellar stroke

Life after stroke
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Hello all, I’m posting really for a bit of reassurance.

I had a cerebellar stroke 19 weeks ago. For the first couple of months I experienced major fatigue, which then seemed to settle somewhat. I felt I was learning how to manage it and pace myself. I also learned to recognise the signs that I was overdoing things or using too much mental energy, usually an instant feeling of head pressure and I would stop what I was doing when that happened. Overlapping sound, busy environments, and walking also seemed to trigger symptoms.

Over the last 6 weeks I honestly felt like I had turned a corner. I wasn’t getting as many symptoms and was starting to feel more like myself again. I think I may have got a bit ahead of myself, or perhaps gone into denial about still needing to pace carefully.

Last weekend I did a few things across Friday, Saturday and Sunday - supermarket, coffees out, meeting friends, all quite calm and with not much walking. I thoroughly enjoyed it all, didn’t feel exerted, and had no symptoms at the time. I still went to bed early each night, slept well, and ate well.

Then Monday arrived and it felt like payback time. I’ve felt extremely fatigued, unable to tolerate noise, unable to walk outside for more than 10 minutes without feeling faint or overwhelmed, and even usual everyday tasks feel exhausting. This has now lasted 4 days and I’m worrying whether this kind of delayed crash is expected or not.

Before this happened I had booked a countryside weekend away and had started thinking about work, social plans, and getting back to normal life. It’s so hard to pace yourself when you feel well and just want your life back, to meet friends, enjoy the weather, and do normal things again.

I think this is a bit of a “feeling low” post because I’ve clearly hit the bust after feeling good. I just didn’t expect it to arrive so suddenly or to knock me for several days.

Thanks for reading xxx

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Hello @RubyRooX - I don’t believe I’ve had the pleasure, though I have been following you since you joined last month.

I will just say, be reassured :slight_smile:

It seems to me, you’ve done the classic, too much too soon. I am not surprised as it is natural and normal for us to want to do more and to feel we are now over the worst etc. You’ve done nothing wrong - you did what you felt was right for you and that is exactly how it should be. And now you are [still] doing what is right for you :slight_smile:

Yes, you did too much too soon, but your body and your brain have reigned you back and you have been told in no uncertain terms to slow down. You must now listen to your body and until it tells you you are ready to do more, you must rest.

It’s perfectly normal what has happened and you will learn from this experience.

Wishing you all the best.

A belated welcome and nice to meet you from me!

Namaste|
:pray:

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Thanks @ManjiB for your lovely reply.

It most definitely was a wake up call, it’s just that it hit me without any symptoms at the time of events and it’s now concerning me if I will tolerate our little country weekend away in 4 weeks?

I know we’ve all have different strokes and symptoms but I think I was measuring myself against someone on a rehab forum who was back at work at this stage.. I was clearly testing the water. Lesson learned. xx

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Nothing wrong with doing this and unless you had done it, you wouldn’t have known. As I may have said, there is no right or wrong and you should measure yourself against you. Only you and your body/brain matter. What others achieve may offer guidance and of course we should try these things but always be aware and to be fair you have been aware, but maybe as you say it just crept up on you. Also, your adrenaline will have been high, you were on the up and planning your breaks etc.

I am sure you can rethink/re-evaluate your country weekend plan and adjust it accordingly. You know what you can and cannot do. Just listen to your body and don’t be too hard on yourself.

You’ve learned the lesson and there is no reason why you won’t be back on track soon.

Have a lovely day!

:pray:

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What you describe is pretty typical of fatigue. I know for me my fatigue usually hits a couple of days after I have over exerted myself rather than at the time that I exerted myself. At 19 weeks post stroke you really are still in the early stages of Recovery and whilst you will get good days there will still be some days that aren’t as good. The trick is to pace yourself even on the days when you are feeling a bit better. Don’t overdo things on those better days as, as you have learned, you will pay for it a bit later on.

You did really well doing all those events in one weekend and don’t be too disheartened. Over time you will find that you can do a bit more and that the fatigue as a result of it will become less and less. if you are planning a busy weekend or a busy few days then my advice is to rest up completely a few days before and allow for rest a few days afterwards too. With regards to going away for a few days as long as you pace yourself and allow rest breaks during the day then you should be okay to go. You may just need to rein in any plans to do too much.

Go away and enjoy yourself. But rest up when you get back.

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Hi @Mrs5K Thanks for posting and support, we really have to be so disciplined don’t we or else trouble. I will follow your advice and hopefully come back here with a nice cheery post. It’s mad as I made the awful error of looking online at people’s progress following my type of stroke and read some awful things which upset me and probably added to the fatigue. Lesson No 2: no googling at generic statistics who know nothing about my history.

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It certainly does take a lot of discipline & you will get it wrong at times. But use these as learning experiences.
And yes, avoid googling general stats etc as it can only give an overview. It knows nothing about you and your general health / other medical conditions.
Look forward to hearing about your break.

Ann

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Now you know what happens, how and when it happens. You can now plan and prepare better for your weekend end away:

Don’t do too much a day or two before you go away.

Thoroughly enjoy your weekend away.

Don’t plan for or expect to do too much for a few days when you get back.

While you’re away take lots of little breaks, even shutting your eyes for a few minutes is a break for your brain from taking in and processing all that visual data around you.

But remember, it takes “at least” 6 months for recovery. But fatigue can go on for years depending on the extent of the damage to your brain and brain signalling having to take the long way round that area, if they can.

I hope you have a wonderful weekend and the sun shines for you the whole time :grinning_face_with_smiling_eyes:

Lorraine

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Thanks @EmeraldEyes Oh I have leaned the drill now… I loved the bit where you said “While you’re away take lots of little breaks, even shutting your eyes for a few minutes is a break for your brain from taking in and processing all that visual data around you.” I hadn’t thought of that.. We planned the trip as a change of scenery but you’re right, the brain needs to absorb the new environment. :heart:

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