I don't feel like a 22 year old at the height of my health. I feel like an old lady. Waking up to fumble through my meds that I need to see straight, think straight, and walk straight with. Then the meds to help me eat, and the meds to help me stay awake, and help me sleep.
Or that's how it feels.
5am - Wake up in a panic, usual mild panic attack awakening due to some loud noises like loud talking outside my room, or dogs barking. I begin to notice the onset of body pain for that day. Sometimes it will migrate throughout the day, as is common with chronic pain sufferers. I know I should take my medication before the real pain sets in but I'm reluctant and still hope it will go away if I ignore it, as I'm still in some sort of stage of denial perhaps. | 7am - I have a bad habit of thinking if I keep looking out the window I'll be able to guess the time, which fails. I go down for some breakfast but by habit only make myself hot chocolate and retire back into my room, feeling fatigue from using my little morning energy to do that. |
I give in and pull out my medications. Thankfully, my flask kept my hot chocolate warm while it patiently waited for me to remember it. And I down my meds;
- 1 for the cursed menorrhagia,
- 1 for depression,
- 1 for bipolar/migraine (4 pills),
- 1 for my underactive thyroid,
- 1 for migraine,
- 2 for my vertigo,
- and a pain killer (2 pills)
I still need to go to the Drs to collect my pain killers but walking there would cause me more pain than I'd like to accept right now, so I don't bother for a while. I only like to go out if I have more than one reason to; which justifies the precious calories, spoons and money spent.
So why the difference?
I have invisible illnesses galore. My illnesses aren't one you can see. and their effect aren't ones you could easily spot. The most you'd normally see is me going 'Nah, I'm having a bed day' which just sounds like laziness; and don't get me wrong sometimes it is!
Part of what makes my treatment so difficult seems to be the fact I have atypical traits of almost everything I tap into. Atypical moods (ultra-rapid cycling), atypical autism, atypical vertigo, atypical (mostly silent) migraines, and the biggest part of it, is an all encompassing joint disorder I have, Hypermobility Syndrome, which is very poorly known and researched into, but effects just about every part of you!
My illnesses don't glaringly shine in your face.
When I'm having sight problems, I'm not blind, and my sight is still better than many others, but it's littered with aura and incredibly sensitivity to movement and lighting.
When I have hearing problems it's due to over stimulation in addition with hyperacusis; noises other humans aren't even capable of picking up on. So while it seems an on/off condition to others, it's probably much more consistent and explainable. Should others be able to hear the same things I'm hearing they'd realise how distressing the volumes are, that their voice on top really does cause physical pain, no matter how cool their story was!
When I'm having joint problems, you do not see the bruises all over my ribs and the subluxations (partial dislocations). You will not see me in a wheelchair, so again, it's not glaringly obvious.
When I'm having balance problems you only see me dropping things, and making too many typos, you don't see the walls tilting this way and that, you don't see the ground moving up and down. You don't get a head rush from standing up and temporary blindness from gravity changes. You may only see a clutz, but I know it's a disability when it's so bad going to the toilet can leave you with bruises and the possibility of undesirable stains.