It's all about M.E

Hello Blog, I've neglected you a bit.

Since my last post I've had a lot to get my head around. I've now been doing my 3 rests a day, as prescribed by my NHS specialist. Such a treatment sounds so easy, even a cop out. But having to them at the exact same times every day (11 30, 1 30 and 5) means that day trips become a heavily planned mission, and Uni in September will be impossible. Therefore social life suffers, affecting my mood and optimism.

After reading through some forums to see who else has tried this resting technique (those I find who have done it, say it took about a year to feel the improvement), I found a guy called Ross. He'd taken Effexor, an AD, and said that teamed with constant rest, he felt great after just a few weeks. His post was 8 years old, but when I saw his e-mail, I thought contacting him for more info was worth a try. I didn't discover much more than what I had already read. Yet he did tell me something that his doctor told him; "Give in to it physically, fight it mentally". It's spot on. Although ME is a physical illness, it's the fight with your mind that's the hardest part. It's the willpower, forcing yourself to rest and miss those sunny days out that's hard. My mind want's to carry on as normal, yet my body won't let me. ME is a very debilitating and frustrating illness. It's not who I am, but the result of who I was. 


Like anyone with ME, I have good days and bad days, where my symptoms are lesser or more severe. I'm currently experiencing a string of 'bad days'. After over doing it Saturday by playing beach rounders for ten minutes (the first time I've had energy to run at all in months!), I'm recovering with severely aching and heavy muscles, fatigue, dizziness, and a have just overcome a terrible 24hr headache that felt like a hangover. It also disrupts my sleep, in which last night was particularly bad. Having gone to bed at 10 30 pm last night, I wasn't able to fall asleep until 7 30am, staying in slumber for a measly 3 hours. The cycle continues, as I've now had to cancel plans to see friends tonight and shopping in Portsmouth with my boyfriend, Mike, tomorrow.

This does all sound doom and gloom I know, but there is a tiny bit of optimism. I'm learning that I need to worry and stress less, which are contributors for making ME worse (and even for causing it in the first place). The first time I did my half hour prescribed rest, I fought back tears, and I smacked my palm against my forehead with frustration.

I still feel like this sometimes, but at other times I'm learning to make the most of my rests; listening to Cocteau Twins and doing my prescribed breathing exercises. Breathing in colours I associate with happiness and calm, and breathing out 'negative' colours I associate with bad emotions I'm feeling at the time, has proved quite beneficial on my mood. However keeping this exercise going for more than 3 minutes at a time is still a huge challenge for my ever thinking and racing mind.

I suppose I'd like my friends to read this. I have an amazing circle of friends and family who support me, as well as Mike, who is wonderful and more understanding than I could every ask someone to be. I worry that some of them think it's depression - a very common misconception - and dare I say it laziness or apathy. I know that my Dad and Nan don't understand it, but I have to accept that ME doesn't 'exist' in their generation's mind.

It's difficult to get across to people that I have an illness because I don't look ill. I go out and socialise on my good days, and I conserve my energy to do my hair and make up before I leave the house. In a crowd I look just like any other woman, which makes things easier and makes things more difficult  at the same time. For example, if I'm invited to a party spontaneously, and I haven't saved any energy with some restful days before hand, I have to say no. An hour in and I'd feel compelled to shut my eyes, out of no will of my own.

So I suppose I'm saying to my friends that although I may not be with you in the flesh as much as I'd like to be, it's out of my hands. After my probable year out of uni to relax and recover, we shall make up for lost times (:

See you on my next good day, which I hope, is Wednesday!

x