Sunday, 29 June 2014

Life As A Carer - What is ME?

So, I have toyed with the idea of writing about my life as a carer for some time, I want my blog to be quite whimsical however, I am a carer and, I suppose this blog somewhat revolves around my life, so, I think I should probably talk about it, plus, hopefully it may help people out there who are going through something similar. With that in mind, I figured, my first post about my life as a carer should probably explain, why it is I am a carer... Allons-y

Now, quickly for people whom haven't seen my about page, I am married to Jan, and, for some time now, Jan has suffered with a plethora or ailments, one of which, is ME.

Many people reading this, whilst they may have heard in passing, the acronym ME, will not know (myself included before Jan's diagnosis) what it stands for. ME stands for Myalgic Encephalopathy (formally Myalgic Encephalomyelitis), which, is quite a mouthful, hence the handy name ME.

Before going any further, I should explain, there are a number of different names floating about out there for, what is in effect, a condition that the medical world know absolutely nothing about... put it this way, science knows more about real life Kryptonite than it does about the true cause of ME. Anyway, ME is also known as, Chronic Fatigue Syndrome, Post-Viral Fatigue Syndrome, Chronic Fatigue Immune Dysfunction Syndrome, and, probably many more, those are the main ones I can think of off the top of my head.

As I touched upon before, the true cause of ME is unknown, and, to people who are living with it/caring for someone with it, it seems to be that research into the condition is severely lacking, however, it is estimated to affect some 250,000 in the UK alone.

The symptoms of ME can vary greatly from patient to patient... think how rare it is for 2 of the X-Men to share powers/abilities. In a small number of sufferers the effects of the condition are minimal, it may simply be that they tire quicker than normal, however, they can lead a relatively normal life. Sadly, in a large portion of sufferers however, Jan included, life is changed drastically. Some of the symptoms can, and often do include, debilitating fatigue, extremely painful muscles due to muscle spasticity and joints locking (having to be physically manipulated by someone), bowel and bladder issues, poor memory, difficulty concentrating... to name but a few. ME is a non-discriminatory condition, it can, and does effect people of all ages causing many issues for the sufferers... children often miss a large portion of schooling, often having to drop out, thus missing out on both education and social development. For people of working age, employment often becomes impossible, family and social life becomes difficult, and, in some cases impossible and, in severe cases, sufferers become house or bed bound for months or years at a time.

The prognosis of ME, as is the case with everything else to do with the condition, is somewhat of a mystery. Some people may return to normal health (it is a small number of sufferers whom this happens to), some people with it suffer in a fluctuating pattern, they have good periods and bad periods, sometimes knowing what is causing the bad spell, sometimes however, it is quite random. A number of people remain severely affected by it, with no real ups and downs, needing a large amount of support and, in a few cases, people continue to deteriorate... I have read reports of people ending up in a coma and, in some cases they have died due to complications with the treatment of symptoms.

Due to the lack of knowledge surrounding ME, treatment of the condition itself is non existent, the only option available to the many people affected is to manage its affects with painkillers (even going so far Morphine), supplements, exercise, diet etc, whilst these methods can help, they do not always.

There you have it, a little info about ME... It's difficult writing about something that nobody truly understands, however, I think I've covered all the main points of the condition. If there is anything you would like to know about ME that I don't seem to have covered, or, if you have any questions about life as a carer that you would like answered in future posts, please leave me a comment below.

I'm sorry again this wasn't my usual daft nonsense, normal service will resume shortly.

Thanks for stopping by, I do hope you enjoyed yourself.

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