Do you realise how many stairs there are in the world? Is there really any need? Would it kill people to put a ramp in instead of one step? This is my biggest bugbear. It drives me wild. Happily going about my way and bam 3 steps at the end of a ramp. WHY? Also can we take a moment to ask the world why dropped kerbs either don't exist or have tiny lips in them just waiting to catapult me out my chair when I least expect it.
2. Showering & Getting dressed
A hot shower eases my joint pain, so you may ask why I don't do it more often. Do you know how exhausting that shit is? I have a shower seat and I can still only shower at night because it's so tiring. I can't have it too hot because it makes me dizzy. Then there is the marathon of getting dry & dressed. I have actually had to take a nap between these steps. Basically showers are a trap. They suck you in with their warmth and then make you feel like death. Some days I physically cannot dress myself. My mum has to wash and dress me. I am 23 and my mum literally has to wash my hair, scrub my back, towel me off and put my underwear on for me. That's not a good feeling. So next time you say it's gross that people don't shower every day just take a moment to think how exhausting that can be for some people. I physically cannot shower that often.
3. Eating
Who knew eating could be so difficult. My stomach hates certain foods but also picks and chooses when it hates them so I never actually know if today's the day it's going to make me feel sick. My jaw hurts and dislocates if I eat anything too chewy. My parents/friends/kind waiters have to chop up my food for me. I get hand spasms and through food everywhere. I'm 23 and not allowed to carry my own plate. I get spasms in my throat and choke.
4. Brain Fog
Now this can result in some hilarious things being said but it can be super embarrassing and very frustrating. Imagine being in a lecture where you are fully capable of engaging with the class except your brain is so foggy it takes a few mins to process questions and when you finally get round to replying what comes out your mouth is a big pile of shit that makes no sense. Trying to write blog posts can be impossible because the wrong words come out. It makes you feel stupid and ridiculous. It can also be dangerous. I've picked up hot curlers by the wrong end and burnt myself.
5. Sleep
Y'know that thing that everyone does at the end of the day? I have a love hate relationship with it. I need it yet it avoids me. I struggle to sleep and when I do it is not restorative in the slightest. I wake up just as tired if not more so sometimes. You should see the amount of cushions I sleep with so support my joints to get comfy but still no sleep. Then in the morning I have to leave extra time to get up because it takes me so long to physically move all my joints.
Here's a quick list of a few more
- Can't go to the toilet because it hurts too much to get there, then can't actaully get off the toilet because my hips and knees suck.
- Have to turn down invitations because I'm in too much pain or have to leave things early because of pain
- Can't get into my own medications because they make the packaging bendy finger proof.
- Can only wear pyjamas and lounge clothes because nice clothes physically hurt with their seams, tightness and who can even open those damn buttons?
- Opening a drink - why are they so difficult to get into
- Holding my phone. Sometimes it feels like it weighs an actual tonne.
- Some days I have to do nothing. Like stare at the ceiling nothing because I'm too exhausted and in too much to pain to even watch tv and noise hurts.
- People don't actually believe I am in fact disabled because I look so damn fabulous (sometimes).
There are so many other things but I don't want to bore you plus my brain hurts and I'm super hungry so that's it for now.
I want to write more posts on my health and disability etc so let me know if there is anything you want me to talk about.
Beth...x
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