Me and ME

Over the last few months I’ve been undergoing loads of blood tests and been to a billion doctors appointments. My blood shows something but doctors don’t know what, so I’m being referred to a specialist for that. I’ve also been told I have ME (Myalgic encephalomyelitis), also known as Chronic Fatigue Syndrome, likely brought on by a viral infection I had back in May.

Since the diagnosis not much has change really. There’s not a whole lot that can be done apart from pacing and managing the symptoms. I am not good at pacing and will continuously push myself too far, mostly due to guilt. I can’t say no, and I always feel like I need to ‘keep up’ with everyone else. And I’m generally too scared to actually ask for the help and take the breaks I need. It’s hard. I also feel like people don’t take me or ME seriously as an illness and when I say I’m hurting or I’m tired, I get a lot of ‘awww, poor baby’ responses. It just makes me feel bad and I’ll carry on pushing despite being asked if I’m ok. It can lead to me doing damage to myself and genuinely not being able to function for a few days

‘Brain fog’ has been a bit of an issue for me as well. Forgetting words, forgetting doing things. Little things that throw me off. Trying to type and forgetting how to spell things, what order the letters go in. Drifting out of focus only to look back at my screen and I’ve typed a paragraph I don’t remember doing. It’s….odd. And embarrassing. I also can’t remember people’s names at work, and its even harder when I’m put on the spot or in a meeting or something. I don’t like it.

I’ve joined some self-help groups for ME sufferers on FB and they’ve been a good place for me to get advice on looking after myself and making a start on pacing, so that’s good. I don’t think there’s a lot of help out there for us so it’s down to us to look after ourselves and each other.

For those that are interested, this is a list of my current symptoms:

  • exhaustion, like, constantly. For no reason. No matter how much I sleep
  • back hurts
  • hips hurt
  • knees hurt
  • hands hurt
  • brain isn’t working
  • cant concentrate
  • cant find the right words
  • dry mouth
  • palpatations
  • confusion

All super fun things! Not to mention I’m still at work while dealing with this. I took a day off today as its a particularly bad one, and I’m terrified of my back to work meeting.

For those of you unable to comprehend a chronic illness, especially one based around energy consumption and pacing, the ‘Spoonie Theory’ is a good explanation of it.

The spoon theory is a disability metaphor and neologism used to explain the reduced amount of energy available for activities of living and productive tasks that may result from disability or chronic illness. … A person who runs out of spoons has no choice but to rest until their spoons are replenished.

Basically, we have a set number of spoons to use a day. Go to work? Uses 5 spoons. Shower? 2 spoons. Cook something to eat? 3 spoons. Eventually you run out of spoons and all you can do is rest until you get some back. In tough situations you can ‘borrow’ spoons from the next day. But you have to bear in mind that you will then have to get through the next day with LESS spoons to start with. At the moment, nearly all my spoons go on work. If its a stressful or busy day, it costs more. Every activity cost something, and I’m trying to learn how to pick and choose the ones that are important. Its difficult. And I’m not very good at it. But I’m hoping I’ll get better at it.

Anyway. Sorry if this particular post makes not much sense. I’m doing my best on minimal spoons. I have spent nearly all day asleep. Its taken me an hour to type so it’s all you’re getting!

If anyone has any questions about it, or any fellow spoonies can point me in the direction of any good blogs or self-help stuff I’d appreciate it.

A x


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