Hello there,

So last Sunday here in the UK the clocks went back an hour as part of daylight time saving. I never usually give it much thought as before I got ill it never used to bother me, and even when I travelled I never suffered jet lag that badly.

However this year it has seriously messed with my sleep and energy levels, I don’t remember it being this bad the last couple of years. I wake up between 6am and 7am not being able to get back to sleep, and then when it gets to 5pm I can barely stay awake. It’s a struggle to even eat dinner and brush my teeth!

It really got me down because there wasn’t anything I could do (except try to stay awake and I physically couldn’t do that), and I didn’t know how long it would last. Luckily last night seemed to be a bit better and today has been okay, so that’s really good, has anyone else experienced anything like that?

My extra fatigue might also have something to do with the last few days being kind of stressful. There’s been some very harsh coverage in the UK press about ME, saying we just need to “exercise and think positive” to get better. I don’t want to talk a lot about it here, purely because I don’t have the energy to get angry again (I’ve ranted a lot on twitter and Instagram already haha), but obviously you can imagine how upset and frustrated I was, I’ve only just got over it.

Although today has actually been a good day. I managed a trip out in my wheelchair! My dad took me to a bookshop and I had a browse. Obviously I had to stop myself spending hundreds of pounds, I managed to whittle it down to just buying three books though, very restrained of me I thought! haha.

And yes, I know my hand looks weird…blame my hyper mobile joints!

I’m just so pleased I managed to get out. I was wearing proper clothes, I was wearing makeup and I think I passed for a functional human being! haha. Seriously though, leaving the house is always so stressful for me, but I managed to conquer depression, anxiety and all the pain, fatigue and other symptoms that come with ME, I’m so pleased and proud of myself.

Of course now I’m back in pyjamas! Maybe I’ll start one of my new books.

Until next time, Rhosyn.

Hello there,

So I know I’ve been absent for a while now. The stress of what I wrote about it my last post has effected me a lot. The reality is my mental health is just as fragile as the physical side.  On top of that I still haven’t got a new date for the second attempt at my health assessment, and I’m trying to decide whether or not to have the flu jab done this winter. I hate the feeling that I’ve got lots of decisions to make but no energy to make them.

My pain levels have been very high again, especially in the last few days, and I’ve been both simultaneously feeling more anxious and more depressed. That combination, I find, is particularly unpleasant.

I find that the internet can drain me of quite a lot of energy, so I took a step away, and took some time to myself to recharge. It’s so important to do that, even if you’re completely healthy, but especially when you’re struggling physically or mentally.

Today has definitely been better. So hopefully that means tomorrow will be better as well.

 I find tea helps.

Until next time, Rhosyn.