Ive got ME but im never ill?

I found out something crazy today!!  And because i have been acting crazy for the past week, getting worse and worse as the days go on, and getting less and less sleep as the days go on, i may have to [i cant remember the word for what i will have to do but it will come back to me – it means alter to make it read right? Anyway I’ll add it later in capitals after this sentence if it does come back to me, its probably quite important to leave this bit in because its part of whats happening to me at the moment] EDIT  [ It came to me 6 paragraphs down] this post later when I’ve had some sleep. I have decided not to alter the post as its a true record if i don’t ‘edit’ it.

Anyway, i have often said that i don’t get colds, flu or any of the sickness things that go around and that my family and friends get. I’m never ill. I got/get the ME aches and tiredness for a day, go to bed and then id usually be right as rain by the next day (until i had the relapse in October 2009 when i thought i was going to die but that story has been told before).

For the past week, possibly 10 days, my sleep pattern has been getting worse and worse and my emotions have been getting more and more erratic (i cried for 4 hours at one point until my hands went tingly and at 3am i fell asleep). Ive been REALLY anxious, my heart has been pounding constantly (as with huge adrenalin rushes), I don’t feel hungry and for the last 2 days I’ve been looking in the fridge and been unable to work out how to make food so I’m not eating at all – which didn’t seem to matter because i wasn’t hungry anyway.

Ive driven Jon crazy too, keeping on and on about the same thing, niggling away at him – i don’t want to because when I’m well i couldn’t care less about the thing I’m going on about but the iller i get the worse i niggle. My brain wont let go of it though and for the last 2 days, to cut out the anxious feeling and the non stop washing machine brain, all I’ve done is play a computer game on my laptop with the TV on in the background so that my brain doesn’t have any blank corners that it can work away in (till 3am where i fall asleep exhausted only to wake again at 6am). Jon was going back to Ellesmere yesterday which always makes me a bit odd and even though i know I’m going to see him on the 18th which is only 10 days away that didnt seem to help. Everything is so lovely between us when im well but yesterday, after 2 days of me being tearful and ‘niggley’ (that’s a very nice way of putting it) he left really angry (hes fine again today and things are back to normal between us). He said i was acting as if i was on speed and that i wasn’t even breathing properly when i was talking. I guess that adrenaline is causing that?

Ive got a cold sore which came up 3 days ago and a few mouth ulcers. I get both those things when I’m run down and have done for years. I don’t seem to get ill in  the traditional way, snotty nose, sore throat, temperature etc but i do get ‘run down’? Ive just spotted that as i was writing.

I had to take a Valium yesterday to calm myself down (Jons suggestion i wouldn’t have thought of it myself) and did the same thing a few days ago. It does work but you cant do that every day, all day, just to feel normal. (EDIT!! Eureka!!)

I also have this thing that i don’t remember having before where i don’t feel attached to whats going on around me – everything is a bit fuzzy and blurry – its as if I’m fading out or something. I cant understand what people are saying and feel like i should grab hold of something to stop me falling/disappearing/floating off. I cant really explain it. Its a bit like brain fog but 10 times worse because everyone/thing else is covered in the fog including sound. A bit like swimming under water but not moving.

Michelle, my Occupational Therapist, came today and commented that today is the first time shes seen me looking unwell. I guess it must be the cold sore, white face with black circled swollen eyes. We sat outside on the bridge in the sun with the ducks and she filled me in (see below) on what is probably causing all the symptoms i have and said because i have a cold sore and mouth ulcers she thinks thats proof that what she says is correct. Apparently even chicken pox can show none of the normal symptoms in ME patients – not even the spots!

So one more lesson learnt – when i start feeling like this, for no real reason that i can see, its probably because i have a cold, flu or some type of virus and I’m just not exhibiting any symptoms. (This is all paraphrased by me and my ME brain so may not be medically exact.) My loss of appetite was because of hypothalamic dysfunction – the hypothalamus is what regulates your systems and when ME sufferers have underlying infections this will usually become unregulated. The first symptom of this is sleep becoming poor – emotions and sleep are closely tied. Next your appetite goes haywire – you can be hungry all the time or not hungry at all, temperature control is disrupted and your digestive system can have problems too. Your immune system is still doing its thing but you exhibit no symptoms – apart from the ME symptoms that you are probably familiar with. I told you it was crazy!!