The difficulty of improvement

Well, for me it has been one year, and I have felt some substantial improvements but it seems they come with a cost. The most noticeable 10% leap was losing the brain fog and confusion, and of course this has been wonderful in one way, but a curse in another way. Now, I can sense my other symptoms, such as vestibular impairment with much more lucidity, whereas, prior this was masked by brain fog and confusion. So, for instance, if I am doing something and I feel suddenly giddy, the giddiness is much more pronounced. I guess this is compounded by the memory of my life prior to the major stroke when over three months I had six TIAs and how I felt then can be very much how I feel now at times, there is probably some subconscious anxiety at work because of this. 

My gait has improved, and I am not shuffling so much, but it means my other symptoms are much more hidden now. In the past, the shuffling would be a clear indication to people around me that I was struggling. Now, I probably appear just as anyone else would, but inside my entire nervous system is tangled. Some people say, 'You've improved a lot', others don't recognise the improvements and tend to lump the whole condition as one thing inseparable to smaller improvements, admittedly, ones I can only see myself. 

The gaps in symptom acuteness are widening, but this means when the symptoms increase due to fatigue or anxiety, I feel it more. It puts me in a lower mood because I've had a bit of reprieve. Prior, I was managing symptoms 24/7, and so I got used them, I guess. But also, when they increase now, they worry me more. I get used to periods when I can manage, and any sudden change in that rings alarm bells, whereas before, there was no call for those alarm bells to be going off every hour of the day. When you feel rotten from wake to sleep, you just kind of just roll with it like tumbling down a hill, but when that feeling has a sudden onset, it can be quite anxiety inducing.

In the early months, fatigue pretty much dictated what tasks I set for myself, now I set tasks for myself and fatigue gets in the way. This can be very disheartening, because one feels capable at one time, and then very quickly incapable. To be honest, I've never really understood what fatigue is with me, for me it's the onset of the residual symptoms I have. I've always been a sort of world weary chap, so fatigue in itself is not a great departure from my personality. It does, however, mean that I get especially giddy, weak, tinnitus roars like a waterfall, auditory overload rumbles my skull, my vision goes blurry, and that's when dyspnoea starts.

What amazes me is what I have dealt with every day for one year. It has stretched my resilience to the limit. It has tested my innate optimism and natural survival instinct. And it hasn't even begun to be at where I would like it to be. I was put in contact with a cerebellar stroke survivor who had the same stroke in the same month as me, we wrote long emails to each through-out our recovery and continue to write thus far, he wrote that he felt he has had an awful year. I didn't really think of it like this, for me there has, and will continue to be awful times, but I was thinking the other day about my life, and how this circumstance was thrust upon me. How I lucked out in the lottery, but that's just to do with my own expectations. When you live for the moment, you tend to imagine in your head everything else other than something like a stroke being thrown into the works. Phase two, just got to deal with it, and admit when you're not dealing with it. 

So, here I am. Phase two, year two. Let's see what happens now. 



Well written Rups. I am mostly optimistic and can do so much more after five years than I ever thought possible. I still have daily issues with fatigue and constantly try and improve my walking gait. I think we always fear any slight sensation in our body and, being old now, my other little ailments like dry eye and rhinitis seem heightened. All we can do is move on as much as we can. 

I have found stroke almost a taboo topic so far as others are concerned. It is easier for people to assume you are well, despite the fact that we all face daily battles to maintain optimism and independence