When I'm asked what exactly is wrong with me (in terms of symptoms rather than a label) it isn't easy to respond. On the one hand, I don't want to sound like a whinger who is providing a laundry list of symptoms but, on the other, I don't want to have what I'm experiencing being trivialised or misinterpreted. So, I'm hoping that this post will go some way towards providing a much more considered and accurate overview than when I'm put on the spot.
A major element is fatigue. It is difficult to encapsulate what that means as common usage of the word relates to 'feeling tired' and this is way beyond that. Although I still haven't exhausted all the tests the medical profession want to do on me before offering a diagnosis, it is looking likely that Chronic Fatigue Syndrome will be the outcome. Initially, I objected to the term as it suggests 'being very tired' but, now I've thought about it some more, it actually does a pretty good job of describing how things are. Chronic means long-term and constant and fatigue means lacking in energy. Put simply, my body and mind are almost constantly without energy.
What this means in practical terms is that my body is unable to produce enough energy for everyday life. I will go into all the medical elements in another post, and also detail how my illness escalated, but for now I just want to focus on how I am at present. Not being able to top up my energy reserves has consequences for pretty much every part of being alive. Sleep doesn't refresh me and laying staring at the wall doesn't refresh me (although both activities do provide benefit in the shape of not sapping any more energy). Any exercise or mild exertion leaves me wiped out. This includes humdrum little stuff like walking to the bathroom or having a shower etc.
Worse than the physical elements though is the mental fatigue. Rightly or wrongly, I've always placed a great deal of my self-esteem on my intelligence and I now find myself stumbling over words, being stressed out by questions and becoming wiped out by the simplest of mental exertion. My memory has become unreliable and I sometimes find it difficult to differentiate between something that has actually happened and something that I dreamed about.
It seems that a lot of the problems come about because of my hypothalamus. This is a part of the brain located just above the stem and it controls the automatic elements of our nervous system. So, things like metabolism, body temperature, heart rate, sleep cycles etc. All of these 'automated' functions seem to be haywire for me now. For example, I can't cool down and my heart rate becomes worringly fast when I stand up and it feels like it will burst out of my chest.
So, that's basically what is going on for me right now. I'll be talking about the research I do to find potential 'cures' or at least making things less problematic in future posts and I'll also deal with the impact on others. For now though, I hope this overview has been informative.
Take care,
Barry
