When I have a pain flare up, which often coincidences with PEM (Post-exertional malaise – the increased symptoms that comes after an activity when you have ME), it takes so much energy and leaves me lethargic and weepy. I try to think positive, but it’s like I’m always at the brink of tears. Like I carry a great sadness, my whole body just feels sad.
It’s tough to keep my nose above the water these days, especially as I can’t do anything to cheer myself up. The stress of all the things I need to do that I’m unable to because of my health is immense. I try to let go, as I can’t do anything about it, but I constantly feel as if I should just try more.
Some days this chronic illness thing sucks more than others.
I recently realised that I’ve probably had ME since I was 12/13 years old, not 20/21 as I previously thought.
This has further turned my world upside-down, as it wasn’t already traumatic enough to get medium/severe ME at ~25 (it progressed from mild around 22 or so).
Let me explain.
All my health problems as a kid was not taken seriously and was explained away with things such as ”hormones” and ”teen fatigue/depression”. Basically what I thought was that I was lazy and hopeless and should just ”get on with it”. I just didn’t know how to do that. If fighting as hard as you can to keep your head above the surface was ”being lazy” and ”not trying hard enough”, what on earth was I supposed to do?
If I was lazy, and not fighting, everything was my own fault.
Not being able to get out of bed – my fault. It just felt impossible but everyone said it was easy. I should just do it.
Imagine this being your life for 10 years. All through your teens and the start of your adult life: Things that seem impossible, like walking up a wall, is by everyone else deemed easy, and the reason you can’t do it is that you’re lazy.
That’s a very scary world to live in. No wonder I eventually did get depressed and suicidal.
I’m working hard on trying to forgive myself. Forgive 16 year old me. Tell that scared kid it’s not their fault. They’re not useless, lazy and hopeless. I’ve never before wanted to go back in time and hug myself. Tell me that it will get better (and worse, but honestly; I’m rather physically I’ll than psychology broken. At least now I like myself.)
I’m not lazy. I never were.