I want my life back.

Feeling low. I know my vit D dose is due tomorrow, so some of it will definitely relate to that. So tired. So anxious… Sad… Scared… Tired… Frustrated… Sick. Everything hurts. I can feel almost normal after sufficient rest, but doing something as little as sitting up and eating puts me back into ME mode and reminds me that normal isn’t a thing I get to be any more. I’m feeling a bit over it all.

I have a lot on over the next month, a lot for me at least, and there’s a lot of other stuff going on in my life that adds additional stress. I don’t want to give up any of the things I’m still doing, because they bring me pleasure and give me a sense of purpose or achievement, which keeps the depression at bay. I need to have something to hold on to so I can keep swimming. But it’s a tough balancing act.

My cat keeps insisting I go to bed. I don’t know what he’s picking up on, but he notices my crashes before I see any evidence. Last night he tried to stop be sitting up and drawing. I was feeling fine so I ignore him … 2 minutes later I’m shaking. Too late.

I’m swinging between feeling just fine to super light sensitive, shaking, aching, head pounding, about to throw up, crying, need to lie down NOW all in the space of 1 minute. The other night, I had to stop eating dinner, strip off layers of clothing and climb into bed because I was overheating and about to be sick if I didn’t stop. I had been fine right up until I wasn’t.

I’m currently lying in bed, trying to recharge enough to have a shower… My first since Thursday (it’s Monday now). I know I’ll need to lie down again right after. I need to go to the supermarket for milk, and finish baking macarons. At least the latter can be done while sitting on the floor of the kitchen.

I’m just so sick of it all.

I’m sick of not being able to do things. I’m sick of feeling gross. I’m sick of my burning throat, aching and burning joints and muscles. I’m sick of being too weak to open a bottle on my own. I’m sick of headaches. I’m sick of being afraid that I might make myself worse. I’m sick of feeling grubby and smelly. I’m sick of feeling like crying because I’m so tired and sore my body has no other release left. I’m sick of having to explain myself to people who should understand by now. I’m sick of finding that a can no longer do another thing I love. I’m sick of feeling pittied. I’m sick of medical professionals not understanding my illness. I’m sick of being unable to keep a thought in my head or remember a word. I’m sick of unfinished tasks. I’m sick of having no effective treatments of medications to help me function. I’m sick of having to explain that there’s no effective treatment of medication to help me function. I’m sick of there being no treatments or cure on the horizon. I’m sick of note books and diaries and apps to remind me to do the most basic things. I’m sick of everything being so f***ing hard. I’m sick of being poor. I’m sick of not being able to work. I’m sick of being jealous of other people’s ability to just do a thing. I’m sick of merely existing instead of living. I’m sick of ME research being primarily funded by the patients or their lobbying. I’m sick of letting people down, or breaking myself so I don’t. I’m sick of wishing i had something to contribute to conversations. I’m sick of not being considered sick enough to qualify for assistance. I’m sick having to apply and fight for assistance. I’m sick of not being able to go places I want to go. I’m sick of not being able to travel or go to events or socialise without extensive preparation and recovery time. I’m sick of feeling alone and isolated. I’m sick of having to assess whether I should be taking my wheelchair today, and I’m sick of the crash that happens when I get it wrong. I’m sick of people not getting how hard this is unless they’re also going through it. I’m sick of asking for help. I’m sick of feeling like a burdon. I’m sick of having to carefully consider how I express my frustrations. I’m sick of being sick.


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