A rant about M.E.

I ****ing hate this illness.

As I mentioned yesterday - I think it was - I had plans to go to the Abel and Cole 'Festive Foodie Do' this evening with a friend. 

There has been so much adrenaline surging through my blood lately I couldn't stay still without feeling like I was going to explode with panic so I did way more than I should have yesterday, and the day before, and the day before. I should have stopped when I realised I couldn't read, but I didn't. Now? I'm not anywhere near well enough to a) travel any distance, b) tolerate noise, light, smells or temperature changes and c) manage all the anxiety that comes with being around people and actually talking. 

All these things are just second nature to the vast majority of you, but to me, and everyone else with this horrible thing controlling their bodies it may as well be a military exercise. If one thing is wrong, the mission is aborted. That is what had to happen this afternoon. 

I tried. God, how I tried. I desperately didn't want to let my friend down. I showered - generally my main 'job' for the day - dried my hair, straightened it and tried to ignore the fact my body was fighting to stay upright and my muscles were burning. My legs were buckling, my heart was pounding, I was sweating, the light was hurting and I felt very sick. I had made a point of not laying down because I knew I wouldn't get back up. Laying down means the monster can sit on you and then you're stuck. I laid down. I couldn't fight it any more. 

It's worth me mentioning I generally don't shower because I find it a lot more strenuous than laying in a bath. Plus the heat from a bath helps the pain in my legs. I also wait until the evening because it's just about tiring around that I can work it into my sleep hygiene routine and it means I'll definitely sleep. 

You're weak, pathetic and selfish. No wonder you have no friends. 

More sensations and pains came flooding as soon as I tried to move again. I'm not allowed to do anything now. If I need the bathroom I'll have to crawl. I feel drunk. The kind of drunk when you've had 3 or more past when you knew you should have stopped and now when you shut your eyes the world moves. We've all been there. That's what I feel like right now. Kinda ironic considering I've been sober for 6 months, today. 

The only light on in my flat right now is in the hallway. My laptop is on the lowest 'brightness' setting. The TV isn't on. I'm listening to some classical music on Spotify, on a very low volume, obviously. I've had to start wearing my glasses recently because I've gotten that 'strain' type feeling again. I also have an eye mask now with a cooling gel insert. I can't wear a bra. All my clothes have to be loose fitting now or they hurt me. I don't think I'll be eating solid food again for a while; the nausea is that bad now. I have an anti-emetic but it doesn't last terribly long. I need to use crutches to walk more than a minute.

I could go on and on and on. 

Stop your complaining. You're just weak. You have no stamina. You deserve to be hurt for what you've done.

The range of symptoms, and severity of M.E. is vast. No two people have the same experience. Although my friend knows exactly what M.E. is and how paralysing it is, I still can't help but feel so consumed with guilt and shame for letting her down. We both really wanted to go, but it was me that took the decision. Even if it was the right one.

Before M.E. I missed out on things like this because I was either agoraphobic, my abusive ex wouldn't let me leave his sight or I just wasn't invited. And now I'm missing out because I can't do a damn thing. I get the feeling I'm just destined to be alone. Why does this keep happening? It's one thing after another. I don't get it. Some people get such an easy life and I get this?! How is that fair? What did I do?!

I feel so frustrated, angry and like I need to cry. But it won't come out. It takes a lot to make me cry. My mind is consumed with 'dark thoughts'.

I just want to be normal, so so badly.
FML.

Samantha Nicholls. Powered by Blogger.

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