Category: My ME story

My body aches today, especially my tummy. I spent quite a lot of time with a bucket last night, and now I feel like I’m quite hungover and as if I exercised extremely yesterday. I didn’t have any alcohol, btw. I don’t drink. Nor did I exercise. Not in the normal sense, anyway. I got sick from eating french fries, which my body has decided it will no longer tolerate. This meant I had to sit upright for over half an hour to vomit. Obviously when I should have been asleep.

Now I’m still nauseated as well as in pain. My abs have had to work too hard and are trembling most of the time from pure exhaustion. So are my eyelids. I can just cry with fatigue – and with the knowledge that tomorrow probably won’t be better. I hate ME!

Yet another thing about #SevereME that I really hate: I no longer have the energy to shave my legs. Had I been lucky enough to have leg hairs that match the naturally blonde colour of my hair, this wouldn’t bother me (I dont’ care about the parts of my thighs that do have blonde hairs), but unfortunately most of my legs are covered in quite dark, rather long hairs.

Hubby shaves them for me, of course, but even that costs me energy. I know it sounds strange that simply lying on the couch with a razor being applied by someone else is exhausting, but for me (for ME) it is. Any sensory stimulus sucks energy from my body, and being shaved involves touch, sound, and vision all at once. Closing my eyes helps a bit, but that still leaves touch and sound quite on (ear plugs don’t help for sound that can so easily travel through one’s body).

So, here I am; hairy-legged and frustrated, which *also* sucks energy from my body like a very large leech. Yuck!

The little-seen side of #SevereME: this is how I spend a lot of my time. While hubby is visiting his sister today, I have to stay home because my body is too exhausted today to handle leaving the house.

If I’d had more energy today, we’d stay about 45 minutes before I run out of energy for the day, and I’d have PEM the day after tomorrow.

I’m a little worried about my friend. She is so sweet and kind and generous, and she is also not doing well. She is feeling exhausted and drained and misunderstood by the people around her. And she is having difficulties reaching out to others to ask for help. If only just to listen to her and say nothing. I know she’s calling a friend like that just now, though, and I hope she’s getting the support she needs. I just hope she knows that I’m there too, and that I understand very well what it’s like to be extremely tired and frustrated with one’s body and in pain.

Anyway, I’m pretty well today. I slept properly for the second night in a row, which is extremely helpful.

[… the rest was written in Dutch]

I feel fat. I just tried to put on some really nice shorts, but they were too small. They still fit me last year, but I have since gained weight. I don’t even know how much weight, because I daren’t step on the scale.

I hate how this illness is affecting my body. And I hate how I feel angry and frustrated and repulsed by how my body is failing me.

I’ve always been athletic (not that this kept me from feeling fat, but I did kind of *know* that I was slender), but now I look down at my tummy and I see a big round ball, instead of a flat part with a slight bulge at the bottom, just above my hips. I *know* I’m still not as fat as I feel – I’m not obese – but I am overweight and I have gone up two clothes sizes since I got sick. I hate that. And I hate feeling this way about myself. I want to love myself for who I am, regardless of what I look like. I do not judge others for being fat. I just hold myself to different standards.

And this is one thing I am still trying to learn. I deserve kindness from myself. I deserve to love my body. But it is really, really hard to love a body that is sick and refuses to let me do one of the things I have always loved to do: exercise. I hope I learn in time. I fear I may not, or not fully. Time will tell.