Wednesday, 28 July 2010

What's The Problem With You?

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,


Tuesday, 27 July 2010

Why Blog?

After some thought, I've decided to start blogging.

Recently, my plans have had to change as a result of the onset of an as yet undiagnosed illness. Although, with hindsight, the onset has been gradual - the impact it has on my day-to-day life and my plans for the immediate future are only just becoming apparent to me.

Dealing with this is difficult but there is also the added element of dealing with the perceptions and expectations of those around me.  I have gone from leading a relatively normal life to becoming essentially disabled and it is proving difficult for those who know me to understand.  

I am not sure whether writing here is for my benefit or for the benefit of others but hopefully this does not have to be exclusive.  From my perspective, I need to detail the changes I am experiencing (whether they are for the better or worse) and it is also helpful for me to have a place I can store my thoughts.  Being isolated from the world around me is a big part of the impact my illness is having upon me after all.  Also though, I hope what I share here has some use for others.  For friends and family who want to understand why I'm no longer going out and doing things and for others who might stumble across this page and find comfort in someone discussing similar difficulties they are experiencing.

I welcome any input in the form of comments and links etc but I ask that contributers refrain from dishing out 'tough love' or telling me to 'get a grip'.  Whilst I am sure people mean well, it offers no constructive help for me or my circumstances as I am where I am as a result of something other than choice or a lack of positive thinking!

That's enough of an intro, I think.  I will aim to update this regularly but will try to avoid it becoming full of every little detail of my rather uneventful current existence!  Probably no danger of me over-blogging as I don't have the energy anyway ;)