Yesterday I had a pretty nasty day. I woke up in a severe pain flare which nearly landed me in the ER due to the pain level. My hips felt like someone had hit them repeatedly with a baseball bat, my SI joints felt like someone was trying to take them apart with a crowbar, my knees had a kind of grinding pain in them, my neck was (and in a way still is) throwing a hissy fit and I had a spinal headache from my neck. Needless to say, I was in agony and I stayed in bed pretty much all day!
Seeing how I had big plans for today, I was pretty worried yesterday. I would have absolutely hated to have to cancel plans again, especially since it was an activity I had really been looking forward to!
Fortunately, this morning when I woke up, my pain level had eased enough so I felt well enough to drive and go to the event I had planned going to. I knew going would take a lot from me physically as it meant a 100 mile round trip, this time completely on my own, but at the same time, I've always loved driving, especially longer distances! I truly miss being able zooming mile after mile after mile like I used to. Driving today causes so much pain, much due to me driving a car that doesn't suit my needs. I drive a stick shift car without cruise control, but really should be driving an automatic car with cruise control, or even a handicap adapted car where you can drive either with feet or with hand controls, and of course with cruise control. Hopefully one day I'll have a car that fits my needs, either my own, or share with my parents- it's their stick shift car that I currently drive when I need to drive.
Anyways, I love driving! It's such a freedom to get behind the wheel and just go somewhere, see the landscape zoom past outside, see cars and trucks from different countries, see towns flash by as you drive through them, all while listening to some good radio station pretty loudly!
Today's freedom venture out of town was to attend a meeting, a meeting with a newly started political party aiming to improve the accessibility in Gothenburg to begin with, hopefully they'll go national as well. It's such a great initiative, just sad that it's needed. Even though I live out of town from where they're active now, I'll do ALL I can to help out in every way I can and attend as many meetings and events as my body can handle! Awareness and accessibility is something I have a passion for, it's so important, but often forgotten by the people who live a healthy and unlimited life.
People living with a condition or disability have to fight to be seen, to be heard and to get around! It's 2014 now, the days of putting disabled people in institutions are long gone, yet the public space outside isn't adapted to get around in. People living with a disability are frequently discriminated against by cities placing high curbs, cobble stones instead of smooth surfaces, no ramps or too steep ramps, no elevator (or a long detour to get to one- and you wonder why some wheelchair users simply use the escalator?)
We're constantly facing obstacles when out and about. All we want is independence and to get around like everyone else, use the same entrance like everyone else, be able to use public transportation without having to ask for assistance etc.
I'm really glad my Ehlers-Danlos decided to behave well enough today for me to attend this meeting in Gothenburg. I met some truly awesome people and I can't wait to see them all again!
I feel very motivated now! I have my local battle in town for better accessibility, and I'm definitely going to be in Gothenburg as much as I possibly can for events for accessibility!
I can always get out of my wheelchair to walk past an obstacle, but it shouldn't be needed! And I fight for those who can't get out of their wheelchairs to walk past an obstacle! My friend who started this political party and hosted the meeting today, is a paraplegic, he can't just stand up from his wheelchair and walk past an obstacle, his legs doesn't work at all!
Everything that helps someone in a wheelchair, makes life easier for EVERYONE else!
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