Living with ME: Boredom

In which I am so bored I want to scream and break things. Content warning for suicidal thoughts. It was a bad morning anyway because I’d had my hair cut the day before, which involves energy draining activities such as going downstairs (and, worse, coming back up them again!) and talking to people (it’s tiring … Continue reading Living with ME: Boredom

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I’m Back – And I’m Tired!

In which I ramble about the last three months (nearly). It doesn’t seem like such a long time not to be posting, but it’s been strangely hard to get back into writing here. So in this post I’m not talking about any topic in particular, but just making a summary of what’s been going on … Continue reading I’m Back – And I’m Tired!

The Frightening Decline

It’s not typical for someone to keep getting worse when they have reduced their activity as much as you have. This was the news the OT from the fatigue clinic gave me when I saw him seven weeks ago. It threw me into a spiral of fear and depression which I have yet to emerge … Continue reading The Frightening Decline

Severe ME Day 2018

Severe ME Day was begun as a way and a time to remember those who have died from ME/CFS. It is held on the 8th of August because that was Sophia Mirza’s birthday: she was one of the first people in the world to have Chronic Fatigue Syndrome listed as the cause of death on … Continue reading Severe ME Day 2018

Living With ME: Despair

Life has been hard recently. It’s hard to say how long for, really. At the outside, I could say life has been hard since I was about ten and discovered the fickleness of friendship for the first time. It’s never been the same since. But, for the purposes of today, the last few months have … Continue reading Living With ME: Despair

Walking Away From My Wellness

Before I get to the meat of this, let me celebrate this historic day by saying CONGRATULATIONS IRELAND! You beautiful, wonderful, brilliant people. Thank you for voting to allow women and other pregnant people to make their own choices about their own bodies. Thank you for voting for people not to be forced to travel … Continue reading Walking Away From My Wellness

Living With ME: A Bad Day

Reading this back, I see that I mentioned going to the toilet a lot. The reason for this is that it was most of the activity I did on this day! Plus, one of my ME/CFS symptoms is a constant slightly-rough throat, which means I tend to drink a lot. 10.15  I wake up. It … Continue reading Living With ME: A Bad Day

Living With ME: Priorities

A few years ago I met a young woman. She seemed very amiable and we met up a few times after I’d moved to a more northern city. I realised that she was in fact a prat when she made this remark about a person with ME/CFS: “She annoys me because she only makes the … Continue reading Living With ME: Priorities

The Prevention of ME/CFS?

ME/CFS can’t be prevented, we all know that. But do we? Certainly it isn’t something that medical professionals talk about, or ME/CFS advocacy and patient support groups, and equally certainly there is no proven method of prevention. I, personally, don’t believe that that means it isn’t possible. I think that we can protect ourselves, at … Continue reading The Prevention of ME/CFS?

Living With ME: A Good Day

It's ME Awareness week right now, so here's a very simple description of what one day is like for me with ME/CFS. This turned out to be a really good day, one of my best. They happen pretty rarely but they're great when they do come round. 10.30 – I wake up from a very … Continue reading Living With ME: A Good Day