The physical effects of poor accessibility

As someone living with a disability of any kind, the world outside of our own home can be pretty hostile and inaccessible at times as it's a world made for and by people who are at full physical capability.

I mentioned yesterday how I battled with the laundry room door to just be a normal adult and do some laundry, well, today I'm paying the ultimate price for my little attempt to be normal!

I did not sleep well last night due to pain in my neck and pain down my right arm from pulling that door open, and today I've been battling a spinal headache coming from the base of my skull, caused by the door triggering my neck issues. Neck issues that has been behaving somewhat decently for the past month or so. Guess I'm back to square one with my neck now eh?

Now over 24 hours after last battling the laundry room door, I'm still in a lot of pain down my right arm, my neck is causing utter hell and the headache it's causing needs a one way ticket to the edge of the known universe and beyond! 

I don't have time for physical setbacks like this! I have a concert to attend tomorrow evening and you bet that I'm going to enjoy every moment of it! I have an expo to go to on Friday in town, an expo I've been looking forwards to since the last one two years ago! And on Saturday I'm going out of town all day to meet my relatively local friends who also live with Ehlers Danlos Syndrome. 

Looking back, I kinda wish I wasn't so damn stubborn all the time! I should have just called for help with that door yesterday, or done the laundry another day. But why should I? Why should I need to adapt for anyone else but myself? Why should MY freedom have to suffer because the local landlord company are too lazy and dumb to realize that their facilities aren't accessible before anyone points it out to them? I mean seriously, even the maintenance people working in the neighborhood walk through that door on a regular basis to fix something, they should have noticed that "oh shit, we need to do something about this door, it's almost impossible to open even without carrying a load of laundry!" and then they should have just fixed it, and fixing it would benefit everyone using the facility, not just me and others with a disability.
I'm not the only person in the neighborhood who's disabled in any way, I may be the youngest but I'm definitely not the only! And when even fully able bodied neighbors struggle with that door, it should have been obvious long ago that it's inaccessible to those who are disabled and/or elderly. 

Again, I'm now paying the price for trying to be a normal citizen doing normal things, in a world where people like me are expected to point and ask for help all the time instead of having a world that's more adapted and accessible for everyone living in it! 

Accessibility that helps the disabled doesn't just make this world a friendlier place for people with disabilities, it also makes life a lot easier for those who don't have a disability. 

A door opener makes it easier for anyone to open a door, especially if you're carrying something.

An elevator makes it easier for anyone who's coming with luggage, children or maybe a temporary injury.

A slight increase ramp next to or instead of stairs makes it easier for anyone coming with luggage or children.

Little or no height difference between a train and platform makes it easier and safer for everyone to board and get off the train. 

Those are just some small things that makes life a lot easier for the disabled, but also greatly benefits everyone else!

We're all part of this world and no one should be left out!


And below we have it: The door to hell, I mean, the laundry facility of my neighborhood! Note how high up the key badge reader sits to the left of the door? The narrow area in front of the door? The edges down from said platform? And on top of it, not very visible on the picture, there's a slight angle of the asphalt leading up to the concrete! And yes, someone has made a mess with laundry detergent outside the door.

Long time no post

I haven't been blogging much lately. There are several reasons for it, but the main reason is probably the fact that I haven't been feeling well and been very busy.

There's a lot going on in my life at the moment, I'm trying to get a diagnose on my health problems. Both me and my doctor suspect it's Ehlers Danlos Syndrome and I'll be going to hospital in September for a proper EDS test. I saw a rheumy in early June, and that was the worst moron I've ever seen calling himself a doctor! The only thing he got right about me is the 8/9 on the Beighton score.

In early June I also had to spend a few hours in hospital due to a possible heat stroke when it was just 20 degrees outside. I started feeling really nauseous and weak, and lost sensation in arms and legs, I very nearly passed out! Had I not had my crutches with me that day, I'd not have managed to get off the bus even. When I got to the hospital hours later I had a "resting" pulse of 95 (I had very slowly walked from waiting room to exam room minutes before)

Working has become more and more of a struggle. As soon as I get home from work and have taken a shower, I go to bed and sit there until I fall asleep sometime late at night and then I don't sleep very well. I'm constantly in pain, constantly fatigued, it's not really a life for someone turning 26 in a few months!

Last weekend I went to Nottingham to visit some friends, it was a great weekend, but oh my have I been feeling unwell since I got home again! I've barely managed to get out of bed since I got home late on Tuesday evening. Since night to Thursday I've had a pretty bad headache and back pain which has been worse than my usual back pain.
I don't know what's causing my headache, but nothing helps to ease it, other than staying in bed moving as little as possible. A friend with diagnosed EDS think I may have slipped a disc in my back, or have developed dural ectasia. I didn't even know people with EDS or HMS could develop dural ectasia randomly like this, I only knew it's common among people with Marfan Syndrome.
Oh well, I don't know the cause for my headache, I just know it feels like having fireworks inside my brain when it is at its worst, and nothing helps. Painkillers does nothing, laying flat on my back does nothing and laying on my side just made me feel nauseous instead. If it doesn't ease up within a few days, I'll seek help in hospital for it!

I've barely managed to eat anything since Monday. Haven't had any appetite at all. Today I've had 6 small squares of chocolate, a few spoonfuls of mashed potato and a cup of soup, and I had to force myself to eat the potato mash and soup!

Ok, this post is not very cheerful at all, and it has taken far too much of my energy. I need to rest again...