Earlier today I was talking about my lovely inspired day, my uplifted mood, my accomplishments for the day and I think (actually I know) that can confuse some, so let me clarify!
1. You only see what I want you to see!
2. I have pain everyday!
3. I can have pain and a good mood at the same time!
4. Refer back to 1!
Here is me, bundled in bed, working on this post…
I haven’t showered today, my eyes burn from the makeup I put on yesterday but haven’t yet had the energy to stand at the sink at wash it off. I get dizzy when I sit up. my tailbone or hips pop when I walk. my left hip is so tense I can barely walk. From the waist down is severe cramping that moves around and feels to heavy to lift. I cannot lay comfortable on either side due to the pain. My back is so tense it is freezing on fire. I’m hungry but I cannot stand long enough to fix a meal so I will eat a meal bar. I am having to bump my hydrocortisone medication due to the pain so I don’t get low on Cortisol and go into crisis. It’s taken me 3 tries to write this much because my shoulders and wrists hurt.
But I don’t want to focus on that when I am having a good emotional day! On a good emotional day I want to focus on the good! These days are rare so let me enjoy it instead of you questioning “oh you are getting better!” Or some other thing that makes our illnesses sound like a competition of whose is worse than whose! Both of these instances are extremely irritating and degrading.
So I am going to rant, have a quick scream then I can get back to my good mood! So here goes…
What part of chronic-incurable disease do you not understand? This is NOT going away! There is NO cure! I will NOT get better! I will have good days! I may even have good days or months! But I WILL NOT BE CURED UNTIL THERE IS A CURE!!! and in my case that’s a lot of cures!!! Haha.
Competition- omfg Why in the hell would you want to, even for a minute, want to compete with anyone, about who has it worse? 1. Our illnesses are not the same. 2. Our illnesses do not compare. 3. We are different people. 4. It almost sounds like you are either convincing yourself of your illnesses or are wallowing in the misery of them. In a way #4 could make sense, we spend so much time getting a diagnosis and so much time trying to convince people that our illness is real that maybe we think we need to continue convincing. But I believe you. I believe in invisible illnesses. But otherwise, the is NOT a competition. If it was a competition it’s not one I want to win.
Okay now I have ranted— I am allowed good days! I am allowed to have good days from my bed! I am allowed to be chronically ill and still have a life thriving instead of surviving.