I meant to post this earlier but I got side tracked downloading apps on to my android phone. I've been looking in to various different apps that might make it easier to use the computer when I'm not so well as well as apps that make accessing musicianship easier. Definitely more on that at a later date!
Last week I visited my family in my home town for the first time in over 2 years. It was a far more positive experience than I'd originally anticipated over all. It was good to see family and friends even if I did only stay for two nights.
Still, there are quite a few things that just made it clear to me just how much my impairments have progressed. When I last visited I was only using 1 crutch. My mobility was impaired but it was more about fatigue. I managed the day ok, I just paid for it later. Now I use a powerchair pretty much full time. I didn't realise when I first started using a basic electric wheelchair nearly 2 years ago that my impairments would get much worse, not better. In all honesty, it's a bit sad really.
Trying to travel at all as a disabled person who relies on equipment and care is a bit of a nightmare. I used to travel quite a bit and visit friends houses regularly. It occurred to me whilst at my mothers house that in the last 18 months this was only the second time I'd been inside someone else's home. Now don't get me wrong, I do love my flat and enjoy having people over but I also miss just sitting with a cup of tea at someone elses, watching a flim, getting a takeaway and enjoying being in other people's company without being the host.
Looking at how inaccessible most people's places are, there's no wonder I don't just pop over for a cup of tea. Not only does it often take me twice as long to get across London as non powerchair users, getting in to the place when I get there is a nightmare. In order for me to get in to my mum's house, I had to use a make shift ramp (bricks and wood) and drive at an angle more suited to a ski jump than an expensive piece of kit.
Then there's the age old crip problem. Where the hell do I pee? Well, to be honest, on this occasion in to a disposable gel urinal in a cupboard under the stairs. Nothing beats shouting out "mum can you pass me my phone please?" "why?" "It's got a flashlight on it". See, I told you apps were useful :p Not everyone has a suitable cupboard and definitely not everyone would be happy for me to pee in it. I couldn't visit my brothers at all as it's 2 flights of stairs just to get to the front door :(
I had to stay in a hotel too which posed it's own problems. No profiling bed puts me at risk in an emergency as I cannot always move well enough to get out of bed independently. (thankfully when the alarm went off at 5am, I was so startled that I spasmed/jerked upright :P ) This also meant I need to give my mum a key and rely on her hanging around any time I needed to lie down.
The biggest problems in hotel rooms generally is the bathroom. Who on earth thinks a bath is accessible regardless of how many grab rails it has. I used this as an excuse to have a bath with lush products though. Although for future reference, getting in is easier than getting out! I had my mum to help + there was a ledge behind my back which made it vaguely possible to get out.
The last and most frustrating problem was the fact that my care is not portable. In other words I can't access it from anywhere other than my flat. If I didn't have support of friends and family there's no way I could have gone. I can't afford to (and shouldn't have to) pay someone out of my own pocket. Thankfully my mother is now more accepting of my impairments and was willing to help out.* Still, she shouldn't have had to take 3 days off work for the duration of my stay and come in to the town centre 2-3 times a day. I know I'm not a burden but I feel like one and it's just not fair when the support should be in place.
My plan to improve things for the future is:
- continue to fight for direct payments so that my care is portable
- continue to fight for higher DLA so that I can afford the additional costs associated with 2 travelling.
- Learn how to drive and get a wheelchair accessible vehicle
-taxicard (applied but where is it!?!)
Once those are sorted perhaps then I will have someone to help with these:
- portable ramp
- supportive manual wheelchair
- bath board/over bath shower chair
- suction grab rails (have but couldn't carry)
I really would like to visit people more often. Being in someone's home is so much less draining than loud restaurants and pubs not to mention cheaper.
*big thanks to travelodge and their massive towels for helping me preserve my modesty ;)
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