A bit about M.E.

 I've already told you a little bit about me, but now I think it'd be useful if I introduce you a little more to the illness that's prompted the writing of this blog- M.E.

M.E, or to use its rather long and hard to pronounce full name, Myalgic encephalomyelitis, is to be honest, a bit of a minefield. The vast multitude of symptoms and lack of a definite cause make it both hard to diagnose and hard to understand.

 Back in my pre-diagnosis days, I scoured the internet in a desperate attempt to self diagnose the illness that I believed was staring my doctors right in the face. The problem was, with so many varying symptoms, there was so much to rule out- anaemia, Lyme disease and thyroid problems to name but a few. 

I knew that for number of years I'd been a lot more tired than could be considered normal, but what I didn't know was that so many of other, seemingly irrelevant problems I had day-to-day all had the one underlying cause, M.E.

Therefore, believe me, I know how confusing it can be. Before I could even begin to get those around  me to understand this 'new' mystery illness I was suffering from, I had to fully comprehend it myself. So now, with a fair few years of M.E know-how behind me and a number of the symptoms experienced at one time or another, it's my turn to help you. Whether you're looking for a bit of information or simply just reassurance that you aren't alone, hopefully I can be of some use :) So here it is, my short but unfortunately not so sweet guide to the gloriously unique illness that is M.E!

So, M.E. Isn't that the one where you're tired all the time?

Yes. Yes it is. But it's so much more than that. As implied by the name (myalgic = muscle pain, encephalomyelitis = inflammation of the brain and spinal cord), M.E lets it's presence be known not only physically, but mentally and emotionally too. The illness can be very debilitating and is often classified as mild, moderate and severe- with severe suffers potentially becoming entirely bed-bound. Despite the controversy,  it is not an illness to be sniffed at.

And the cause?

To be honest with you, the short answer is that nobody really properly knows. You can't eat more strawberries or cut out the red wine to make sure you don't get it. If it happens, well, it happens, and often to those fit and healthy people you'd never expect to be struck down. In my case, it was brought on by a particularly bad bout of  glandular fever- quite often viral infection is the cause. However there is evidence to suggest that genetics or traumatic life events may play a role. The good news? Young people do have a relatively good chance of recovery, at least to some level. The bad? As depressing a thought as it may be, each and every one of us sufferers at some point has had to come to terms with the possibility that we may never fully recover, at least not to our pre M.E. selves. Sucks, right?

What about the symptoms?

Gosh. There's a lot. Far too many in fact to me to cover them all, it'd be remarkably boring and you'd probably wander off and never come back. So I'll cover the ones that have affected me most and those that seemingly came out of the blue:

Fatigue: You mean tiredness? No. I mean 'How on earth did my body get this heavy?! I will never be able to move again' kinda exhaustion. The kind of fatigue whereby you begin to question whether all your body's energy reserves one day grouped together and decided to leave you. Never to return. Am I being dramatic? Possibly, but it exactly how it feels. 

Aches and Pains: Another one of the most common symptoms. These aches and pains can occur throughout the body in varying degrees. For me it's mainly in my limbs and joints- the aching in my hands can be too bad at times to even grasp a pen.

Concentration and 'brain fog': Oh brain fog, my old friend. I've lost count of the amount of times I simply cannot for the life of me find the right words to express my thoughts, or forget mid sentence what I'm trying to say. And while I have the memory of an eighty year old, I have the concentration span of a four year old. But you've gotta see the bright side right? At least it amuses my friends.

Insomnia: Last night was yet another night of interrupted, difficult sleep, which left me feeling as I woke as though I hadn't slept a wink. Though we spend many of our days tired beyond belief, many M.E sufferers also suffer from sleep problems and wake feeling unrefreshed. A vicious circle is thus created whereby this insomnia becomes both a symptom and a cause of this ever more complicated illness.

Sensitivity: Sensitivity to life, it does at times seem. Pain sensitivty, light sensitivity, heat sensitivity, food intolerances, alcohol sensitivity... you name it, at some point or another we've probably experienced it. This  has been one of the most surprising and affecting symptoms that I personally have experienced- so much so that I'm going to eventually get round to a whole post on it.

Nausea: Now I'm gonna be honest with you, despite having had M.E for around 6 years, I had no idea this was a symptom until last Christmas. Having never experienced it before, when I began feeling particularly queasy in the new year, naturally my mind skipped to one conclusion... I must be pregnant. I wasn't, I was just experiencing a new side of my lovely illness. 

Pyschological: No, M.E is not depression, it is not all in my head  and I will not feel better if I just think positively. However M.E can be a rather isolating illness and as such mental illness such as depression and anxiety often come hand-in-hand with M.E.

Living the tired life.

Oh! The pains.

Brain Fog moments

Now, my list of symptoms here is by absolutely no means comprehensive, there's so many more I haven't even touched on and others that are worthy of whole posts of their own. But for now, I think this will just about do. If you do want a more thorough explanation though the Me Association has a great page, as does Action For M.E.

Can it be treated?
There is currently no cure for M.E, or even a definite proven treatment. However many are given which aim to give sufferers a slightly better time of it! Pacing, relaxation and meditation aim to elicit lifestyle changes which in turn lead to a reduction in symptoms, while medication is often given to help with those pesky aches and pains.

So there you have it, my little guide to the ever complicated illness that is M.E. If you do have any more questions or want to share you experience then please do let me know! But for now, I shan't bore you with the details any longer... onwards and upwards to happier things!

Alice x