The day had an early start seeing I had to be up early and leave home already at 7:30, but oh my was it worth it! I've had a really incredible day and just can't stop smiling!
I've been to the disability fair in Gothenburg and I had so much fun there and met so many nice people, learned a lot and for once, felt completely normal and "at home" since having a disability was the norm at the fair unless you were there as an assistant or someone working within the field of disability equipment or organizations for disabled people. I got so much great advice today and got in touch with several organizations for young people in my area, which means a great opportunity to make new friends and have a very nice social life where everyone is at the same level and everyone is attending within their own limits, no judging or no need to perform beyond your ability.
Also had a nice long chat with one of the assemblers working for Panthera Wheelchairs, that guy I chatted with is a paraplegic and he helped me remove the holders for the push handles on my Panthera S2 since I never use the push handles on my wheelchair anyways. Removing the handles and their holders has made my wheelchair about 1kg (~2.5lbs) lighter which does make a huge difference when lifting the wheelchair in and out of the car. Since there wasn't much people around at that time we had time to just chitchat for a while and we discussed how people often look upon wheelchairs- many consider it a failure to use a wheelchair unless being paralyzed, and they prefer stumbling around and being limited in their mobility, anything to avoid the wheelchair! Be it MS, Ehlers Danlos, ME/CFS or any other condition that might limit your ability to walk well. Both him and I agreed on that avoiding a wheelchair like that is really kinda stupid, being in a wheelchair to relieve legs is NOT a failure, instead, see it as a way of saving your legs for other things than walking around outdoors, in malls, at fairs and any other long distance walk that might cause a lot of pain and fatigue. For me, being in a wheelchair meant I could go to the fair today, and not just that, I also drove both ways, alone in the car! That was at least like 85 miles round trip and I haven't been able to drive that far on my own and be active for a whole day on top of it, since before my body started crashing rapidly.
For a long time, walking made me too achy and fatigued it wasn't safe for me to drive more than maybe 20 miles in one go. Now with the wheelchair, my legs are just there but not used when I'm in the wheelchair, which means they're relatively fresh when I get out of the chair and into the drivers seat and that gives me many more miles I can drive before my legs are getting too painful.
While in the wheelchair, I focus all my strength and stability to my upper body, and just let my lower back and legs rest, and that has actually made my arms and shoulders much stronger lately and my shoulders feel more stable, along with being able to cover a greater distance than I'd be able to if I was using my legs to walk.
The guy from Panthera could totally understand even though he has no use of his legs, but he does probably get to hear and see a lot of people who don't accept a wheelchair in their lives until they reach a point of no return when it comes to medical conditions causing the need for a wheelchair. If having an accident it's really not much choice when it comes to the wheelchair, but for us who has a choice... Me and the Panthera guy just couldn't understand why people wait so damn long before they just bite the lemon, request a wheelchair and get at least a part of their life and mobility back!
In the Panthera area of the fair they also showed the different models of wheelchairs they offer, I didn't take a test drive in any, but did try to lift the latest chair: Panthera X, the world's lightest wheelchair and OMG! The wheelchair frame weighs so little it's almost like lifting paper! It's made of carbon fiber and the whole frame weighs about 5-7lbs something without the back wheels on! Now that's one very light chair!
It was also pretty amazing to see how many wheelchair users at the fair were actually using a Panthera X since it's so new on the market still and significantly more pricey than the Panthera U2 Light or U2 or S2, I didn't expect the regions to cover the Panthera X that widely but seems they do! That was a very positive surprise.
I also talked with a representative from Lofric (Astra Zeneca's catheters) at the fair, started to talk since I had been dealing a lot with Lofric catheters while working in the warehouse so it was a kind of "work injury" to have a chat, and I just happened to mention how I tend to not feel my bladder and use the restroom way too little for my own good, it does happen far too often I wait for so long I get stabbing pain in my kidneys so it's not good. She had 19 years of experience of working with Lofric and she said it's definitely not good to have it that way as I have it, I have been considering the ER a few times when I just can't go and it's been maybe 12 hours since last restroom visit and having been drinking a lot of fluids. Said and done, since I know the theory inside out from having read the manual at work many times when being bored due to computer errors and whatnot, she sent a demo box of 5 with me and advised me to try it out at home and then contact my local clinic if I wish to continue with it. Not for every restroom visit obviously, but as a backup for when I don't feel my bladder or just can't go for too many hours, she said I'd feel a lot better if emptying every 3-4 hours in one way or another, it would be better for my bladder and kidneys in the long run. We only have one bladder and two kidneys and we need to treat them well! Seeing I have friends with severe retention and issues, and my issues are an early warning signal... I really don't mind self cath when needed if that means better health.
A lot of people really struggle to stay away from anything that could help them in the long run and prevent unnecessary suffering, while it would sometimes be wise to accept the help and tools that are out there when it's still a choice and not a must to use it.
I'm not bitter about my situation, I try to do everything possible to feel as well as possible and do so for many years to come. If that means using certain aid and items and medicines, then so be it! It's not a failure for me to use those things, I'm just proactive and learning and adapting while I can still choose how much or how little to use the things that helps me.
If I could just find a magical cure for the chronic insomnia, fatigue and the pain that prevents me from taking a regular job, I'd start working the same day I was cured! It's no fun not having the social life of a work place, but since I don't know if and when I get to sleep and what quality of sleep I get, and if my body allows me to be up much or not from one day to another, I wouldn't be a very good employee.
I think my call in life might be more towards socializing with other people living with a disability and get into issues about making public places more accessible for disabled and elderly people as that also helps able bodied people with young children. I also got to hear today that I have the gift of words and was suggested by more than one to consider going to schools and such to talk about living with a disability and still living life to the fullest (as much as it is possible). Kinda scary thought but I'll for sure keep it in mind and consider taking a course to get better at talking in front of a group of people.
To go to the fair today by the way required me to rest since Sunday evening to manage today, so the day I had at the disability fair wasn't an ordinary day, it was a planned outing that needed to be prepared for and I'm not expecting to be able to do many knots for the next few days. My body is literally screaming in several different octaves of agony since I got home, but I don't care because I've had an amazing day and I'm still having a big smile on my face when thinking back on the day! I wish I could go again tomorrow, but if I do I'd not dare to drive myself so dad would have to drive. I'm tired from today and have currently been awake for about 22 hours straight and didn't sleep much last night either. As much as I'd like to go again when I wake up, I doubt I'll be able to, so it's better I aim for a nice long (st)roll through town tomorrow just to get some daily exercise. I don't care how tired or achy I am when I wake up, I am going to go outside at least for a while!
Oh, and I stayed at the fair until they closed at 17:00 which meant I had been there for over 7 hours when I began to drive home, so it was indeed a long day. But oh what a fun day!
And that's how you can be chronically awesome ;)
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