Last week a good online friend of mine was on a coast camping resort little over an hour away from my town as her children are performing with a youth circus that had their show at the resort last week. So on Saturday I drove out there to see her, and to see the circus! The circus was really good, the performers were between 7 and 25 years old, and very skilled! My friend's daughter won the award for best performance this year at the circus, she's very skilled on unicycle, with acrobatics and now also aerial silks, but the different awards were announced long after the show so it was just the kids, their parents (and in some cases grandparents) who were there, and me as I was with my friend.
My friend, like me, has Ehlers-Danlos Syndrome, and that's how we got to know each other- through Facebook groups for the syndrome. We would likely have met long ago had it not been for the fact that we live several hours apart, but yeah, now when she was on the coast with the circus, it was within driving distance for me to go there.
We had an absolutely amazing afternoon and evening together! We have the same kind of humor, and way with words so we had so much fun together and quickly became great friends as our personal chemistry matches so well! I wish we could hang out more often, but we live so far apart so it takes a fair bit of planning to visit each other. But we're already planning on seeing each other soon again, I'll probably visit her at the same time as I go to Stockholm as her city is very near there, I haven't visited her city before, only gone through by car in the very outskirts so traveling there will be both exploring and hanging out, and most likely meeting more fellow zebras! She will most likely come visit here as well, and we'll probably go to Gothenburg together, I'll try to arrange a meetup with my friends in Gothenburg when she comes to visit as they'd like to meet her as well, and she wants to meet them as she's only talked with them on Facebook before.
Anyways, Saturday was awesome! And it was like a little mini vacation for me to drive out to the coast. Just getting away from home for a day and enjoy the summer weather, spend the day in a camping resort, one that I hadn't been to for 18 years, and to get to spend the day with such an awesome friend! We had such a nice time, I didn't start my drive home until about midnight and I got home shortly after 1am.
And for me, it's always nice going to a camping because it reminds me of my childhood as I grew up traveling around in northern Scandinavia every summer with my parents, living in a caravan for 4-5 weeks at a time. My parents left for their vacation on Friday so they're currently in the northern half of Sweden, one would think it's far north, but if you were to fold the country in half from north to south, they're actually just north of the middle. I know exactly where they are at the moment, and remember the scenery of the location despite it being 11 years since I was there last time. I'm hoping to go up there again sometime, but most likely I'd have to take the train or airplane up to the north and then rent a car because I don't think my body would be able to cope with so many miles in a car now.
But back to Saturday. Both my friend and I use a wheelchair to get around outside. Mine is fully manual, while my friend has the same model of wheelchair as me, but she has eMotion wheels on hers which only requires a gentle push on the rims and the electric motor in the wheel does the rest. Funnily enough, we have the same wheelchair measurement as well, so we could try each other's wheelchair to compare cushion and setup. When I tried hers, I did find she had a better setup on the backrest, it was lower than on mine and upright, my backrest is a tad bit reclined, but that can easily be adjusted. Changing the height is more difficult as that means needing to change the whole backrest, it's doable but nothing I can do myself, I will have it done though because I really feel my backrest is too high!
Trying the eMotion wheels was quite the adventure too because I've only used manual wheels before, it was pretty fun and very easy to move forward, but seeing my manual wheelchair being just about the only exercise I can manage, and the fact each eMotion wheel weighs more than my entire wheelchair, I prefer to stay with fully manual wheelchair for as long as I possibly can as I often lift it in and out of the car independently. My friend said my wheelchair was very easy to propel for a manual chair, and her shoulders are way worse off than mine- hence her using eMotion wheels. We also compared cushions, I had brought my old cushion as well just so she could try that one as well before I return that cushion to the wheelchair center. It's a Varilite Meridian cushion, about the only good thing about it is the low weight, but it didn't take long before I started to have pain when sitting on it, which is why I changed cushion to my current which is a Jay Xtreeme. My friend uses a Jay Easy which also has the Jay Fluid under the bum. I tried her cushion too and it was definitely a whole lot better than my Jay Xtreeme so I'm going to ask my occupational therapist to order one of those for me instead. The Jay Easy has more positioning and keeps the legs in place better, and it also felt like it had more Jay Fluid under the bum. I sometimes feel my Xtreeme feels hard, and my legs tends to fall outwards unless I manually hold them together which of course is tiring but very necessary due to my SI joints. The more my legs are helped to stay together, the better really.
It's always awesome meeting others with Ehlers-Danlos Syndrome and just chitchat and exchange experiences, extra awesome with the chemistry match with humor and such too, and it was definitely valuable to compare the wheelchairs as well.
I'm pretty exhausted since I came back home, and in fact lost the use of my legs for a while yesterday while being up at my parents place to tend the tomato plants on the balcony. I was just sitting in the sofa at my parents place watching some TV after watering the balcony plants and just letting the balcony door be open for a while to let some air into the apartment. As I was sitting there, I didn't feel my legs very well and had to look at them to know where they were, and I couldn't move them for a while, guess my body just shut down from fatigue, it has happened before as well, just not when I'm sitting alone on the 2nd floor with no elevator. I was wondering for a while how the hell I was going to get downstairs again to go home, and I had to take my wheelchair down the stairs too. I didn't want to slide down on my bum if I could avoid it as the stairs are hard and surface dirty. Fortunately it helped to rest for a while longer on the sofa and then I could slowly walk down the stairs with my wheelchair in front of me as usual.
Now I really need to try to sleep, it's already light outside and on Sunday I have to leave home already at around 6:30 to head out of town for a whole day event, so I'd better try to change my sleep pattern a bit during this week so I have slept in the night to Sunday!
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