Throughout my post stroke journey, I’ve spent much time trying to find the right word for the days I feel not quite right. Today for instance is one of those days, barely able to get out of bed, whereas yesterday I felt great, almost to the point of imagining I had turned a corner with my symptoms and it could only get better from here on in. Stroke rehabilitation can be a cruel mistress, one day full of joie de vivre and then the next in a malaise. I tend to look on down days as my brain having pushed for new pathways or even made some, this diagnosis is positive affirmation more than anything else.
On these heady days of malaise, I can’t quite pinpoint what is wrong exactly. I know my symptoms are acute and best practice seems to make little difference at all. If I were to go to a GP, and the GP says to me, what’s up? What would I say? I am feeling off? Unwell? Not quite right? Strange? The anxiety at these times comes and goes like the tidal sea. What would the GP say? If you are feeling odd you better get to A&E immediately! What I want to say to the GP is … Just to get it all out, what’s in my head, And I, I am feeling a little peculiar …
And peculiar is the one word that I have come to favour for this feeling, I think it fits the feeling of it perfectly … peculiar. Peculiar works for me because the etymological evolution of the word stems from referring to the individual. Each stroke survivor has subjective challenges bound by commonalities of the condition. My challenges often leave me feeling peculiar, uncomfortably so, not in any direct pain but severe enough to stop me functioning in any productive way.
I know what you mean. I can never quite describe those days either. I too am having one of them today. Must be the weather . I tend to just say I feel really yuck today. I tend to try and ride it out rather than visit the GP but will weigh up whether it is worse or different to my usual symptoms. The consultant said to me a few weeks ago that if how I feel is unusual for me then as should seek medical attention. I guess it has to happen a few times to determine if it is usual or not,
Thank you Rupert for that lovely reminder, that’s another good song to go on my playlist
And I understand that peculiar feeling too, I’ve had it for a couple of days no, and it certainly hasn’t been a good time for technology issues. But I’ve always known there was something missing with my stroke brain, that I just didn’t have the wording to describe or explain. And in everything I’ve read regarding to strokes, none has managed to cover that one particular “thing”…for want of a better word. So I can only assume the medical world aren’t even aware of it because no stroke survivors have been able talk about it, to put it into words.
We get days like these, where our brains seem to have gone off-line to deal with something else perhaps, another phase of completion in its repairs or remapping or something, who knows.
…And today has not been the day for anything technological. I couldn’t get into my Patient Access app to reorder my prescription…even with my hubby sitting beside me. Ended up having to reset my password.
So then I wanted copy that song above to put on my phone, managed to screw that up too and my son had to take over.
This is definitely an off day for me. Just as well my daughter is making the pizza for tea tonight, mine might only be good enough for paving The brain just doesn’t want to deal anything remotely taxing
The only thing my GP would say if I told them I was feeling peculiar would be to go have a lie down. And this is exactly what I do when I feel this way. I too just ride it out.
Aye, we tend to deal with it in private and then lap up the relief when it is over. I’ve mentioned it to people but have framed it as unwell, headachy, anxious &c. If I were to say peculiar, they would say, peculiar in what way? And that is when the conversation would get messy and none of us would be the wiser once it has concluded.
It’s very interesting that you, and it seems others as well, feel that way. I thought it was just me! But as you’ve found it’s hard to put into words and that’s probably why we don’t talk about it much. For myself I would say I have days when I’m “up” and days when I’m “down”, with most being somewhere in between. And, again just for myself, I think it’s more an emotional thing than any physical effects from my stroke. But I could be hopelessly wrong and/or you may be totally different! But I agree even IF I mentioned to my well-meaning GP what would I say?
When I feel this way it brings on my symptoms and my condition is worse. Many of us experience this phenomenon and yet none can pinpoint what exactly is wrong.
I get this too….feel emotionally weird for days, affects my physical functioning altho in a limited way…and then I can wake up and the feeling gone…sense of relief and being happy …but wary it’s going to come again the next day….guess it’s the neurons playing games with me….i am not a competitive person so just let them get on with it eh….on Sunday I forced myself to not get up and do stuff and slept on and off all day, no telly, books, nothing, and then yesterday much better….could it be linked to fatigue and pacing, particularly cognitive pacing….i am always thinking!!! (Forget to do my mindfulness and breathing exercises duh!) self care is soooo hard x
I have similar patterns, when I wrote this post I was feeling awful peculiar and pretty much spent the whole day in bed. The next day, although woke up at 1 pm, felt much more relieved and capable.
Peculiar is the word. Today woke up feeling very peculiar, no pain not depressed. Am I feeling sorry for myself probably yet my Tia was mild compared to some of you lovely people it was a blip. In the last two years my hubby has had penile cancer going well at Christie’s found his aortic valve needed replacing this has been done and all this time he is so calm and is well. Visited 7 different hospitals for a barrage of tests in fact his life has been saved by christies cannot praise them enough . July 25 I had my Tia now 10 months on but am still reeling I think. It needs to stop but how my head like a washing machine round and round. I’m ashamed of myself because you all battling much worse than me I love you all for your honesty and candour yes the fatigue is getting me down but is slowly getting better. Thanks for listening and lots of love to you all.
My doctor named mine as being a ischemic ministroke or TIA. But that was only because the scan didn’t reveal anything. But, he said, that could be because the blockage occurred somewhere deeper in the smaller veins and may have cleared itself. It is still a stroke and there is still a risk of a bigger one.
Your TIA is no less, and it has had an impact on your brain, may even that part of your that controls your emotions. As serious as your husband’s cancer has been and all it has put him through, your TIA is just as life threatening, you are not out of the woods yet. It is just as serious, the only difference is the doctors can’t do much for you. Of course you are still realing 10 months on, it’s like carrying a ticking time bomb around in your head! And you have to live with that, and try to get on with living your life as “normal” as you can. Yes, it can get much better for in time, but that time still takes years, not months, to get there.
Talk to your doctor about this. Have them check your bloods, particularly your nutrient levels. You could find you are low in one of them. Usually its the likes of B12, folic acid and such because they are essentially brain food. And they can be depleted due to the energy it takes for your brain to make those repairs.
It’s all relative to the individual, it’s impossible to compare the complexity of pain and anguish. There is no shame in genuine responses to one’s own challenges.
Thanks all for your understanding I feel that I’m always moaning and I need to get on and live life. Today woke up feeling more positive but got nausea again now passed going to go on my little bike today whether fatigue or not thanks for all listening
What I want to say to the GP is … Just to get it all out, what’s in my head, And I, I am feeling a little peculiar …
. I tend to just say I feel really yuck today. I tend to try and ride it out rather than visit the GP but will weigh up whether it is worse or different to my usual symptoms. The consultant said to me a few weeks ago that if how I feel is unusual for me then as should seek medical attention. I guess it has to happen a few times to determine if it is usual or not,
The brain just doesn’t want to deal anything remotely taxing 
probably yet my Tia was mild compared to some of you lovely people it was a blip. In the last two years my hubby has had penile cancer going well 
to you all.