Nobody warns Stroke Survivors that, although physically they may completely recover and no outward symptoms that they ever even had a stroke, they will experience random attacks of the most vicious and depleting fatigue.
In the early days following my stroke I recall feeling tired, as though I needed to be held up by two bits of string, I simply thought that I had been through a stressful ordeal, I'd been hit with a horrific headache that lasted almost 2 weeks and I was having to work twice as hard to make my body do the simplest of tasks like going to the bathroom or feeding myself.
After several weeks I mentioned my exhaustion to my GP who assured me that it was completely normal post stroke, my body and my brain were trying to heal and recover and sleep was the best thing I could do to help.
Feeling somewhat reassured by my GP I listened and did as I was told. I slept whenever I felt I needed to, which was an awful lot between you and I.
I would love to say now, 16 months post stroke, I'm no longer facing the issue of being physically and mentally exhausted, but I cannot.
Post Stroke Fatigue is completely different to simply 'feeling tired'. I wasn't aware that it was even a recognised issue until I discovered the website that every stroke survivor should have in their favourites; The Stroke Association.
CLICK HERE TO VEIW STROKE ASSOCIATIONS INFO ABOUT POST STROKE FATIGUE
After accessing this website I learnt that my fatigue wasn't caused by activity levels, meaning that regardless of what I spent my day doing, or not doing, I could still potentially be wiped out by overwhelming fatigue at any point.
I have recently come to realise that one of my main triggers is the fact that I have extreme muscle weakness in my affected side so general daily activities such as moving around the house and picking things up takes up so much more energy than it did before, my body is simply not used to the level of effort and energy that it needs to put into simple task now.
Unfortunately there is not a cut and dry answer or treatment for post stroke fatigue, for me it has become a case of doing what I can when I can, not rushing or over exerting myself and learning to pace myself, taking breaks as and when I need them and not beating myself up mentally when I am unable to do things.
As a person with an invisible disability, the fear of judgement and the fact that people, even people who know you, can forget or be ignorant to the fact that although you may be smiling and standing up in one moment you are not completely cured and physically able to do anything and everything. This was one of the hardest things for me to process, if I'm well enough to hoover my living room on Monday morning then surely I should be able to go back to work, right? Not according to the team of doctors and consultants handling my care.
Going back to work post stroke, for me personally will be almost impossible. There are so many elements that are against me; the commute, the hours, the workload, the environment in which I would be, the stress, the responsibility and above all else the safety aspect; Should I be in a room working with a child on a one to one basis and there is an emergency situation I would not be able to vacate myself and that child safely and in a timely manner, because I cannot move at speed or without support. So on paper, I could technically do the job I am contracted to do, if only I could teleport there and back and around school. Oh and not have an excessive work load or unnecessary stress too obviously. A girl can dream!
I'm not sure what this means for me or for my future; nothing is set in stone as yet. I am still under investigation to find the cause of my stroke, perhaps once the root problem has been addressed there may be a change in my circumstances and with some reasonable adjustments I might be able to return to the world of the over worked and underpaid.
Truthfully, I can't say how I feel about working at the moment, I lived for the children in my care, I treated them with the same compassion and kindness I would my own. But that came with a huge price for me; I realise now looking back the amount of pressure that was building up on me each week, the amount of sleep I lost worrying about certain kids, the hours at home I spent trawling the internet for ideas of ways that I could provide the help they needed and the money I spent out of my own pocket to make sure I was fully equipped to provide the appropriate support and guidance.
Sometimes you have to stop and ask yourself what your life is about and what your goals are... what do you need to do for yourself? Not for other people. A time for reflection and decision making is vital for me right now, and this is a moment that every stroke survivor will encounter.
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