I should have slept hours ago, it's just past 5am and I am tired despite having had 3 cups of coffee during the board meeting I attended in the evening. But my mind just can't relax... Too many thoughts going through my head.
I haven't been writing for about a month now, simply been too busy and/or too tired. Been having a fair bit of social happenings over the holidays, along with my Ehlers-Danlos Syndrome flaring some with extra pain and fatigue.
At least something is finally happening wheelchair wise, I'm waiting for an appointment with the wheelchair center to try out a new manual wheelchair at last, after telling the occupational therapist for over a year that I do not sit well in my current wheelchair and need something more lightweight and active as I'm a very active and independent wheelchair user.
I just hope I'll get that appointment soon, and that it won't take long to get the new wheelchair once it's been ordered...
I wish I could get to choose color freely on the new wheelchair but unfortunately it doesn't work that way here, despite it not being an additional cost at all, it's just the region wanting to be boring and only letting people have white, black or graphite on the wheelchair model I think I'll go with: Quickie Helium which is known as Q7 in USA. I'd rather have it in the sparkly Flamingo Glitter pink! But if I can't get the pink that I want, I'll probably go with black because white will look dirty very easily, and black goes with everything. I'd prefer a metallic, glitter color of some kind, but the graphite really isn't any fun... Just because it's a medical item doesn't have to mean it has to look boring! I want my wheelchair to have some personality and match who I am.
I'm seriously considering trying the J3 Carbon backrest as well as it's said to be very good for people with lower back pain, which is something I battle with A LOT no matter what I do.
I know that I have several bulging discs already in 2013, but I also strongly suspect occult tethered cord, I meet many of the criteria for it, including that feeling of something being pulled inside my spine when I sit up with legs straight out and just looking down slightly. I don't trust my legs any longer for walking. I feel very insecure when I'm walking even just within my apartment because my legs can just give way anytime without warning so that I stumble and almost fall, those almost falls puts a lot of strain on the leg that gets the impact when trying to regain balance. And I have fallen without control too when my legs have just given way. Walking is overrated anyways, it just causes more pain, general fatigue and spasms in my legs, I'm better off using my wheelchair as much as possible. One easy way to put it is that I can not walk, I just do it anyways though only very short distances like from bed to bathroom or so. Being physically able to put one foot in front of the other is not the same as being able to walk...
My not yet formally diagnosed POTS hates it when I'm on my feet too, most of the time when I get tachycardia to the point where I feel I'm about to pass out, I'm standing up. Yet another reason to mostly use wheelchair, I get less issues with my heart rate when sitting!
Right now I quite feel like crying my eyes out. Not because of my physical situation, but because I feel overwhelmed and some anxiety is bothering me (that's very rare for me) and there's just been too much bad news lately... David Bowie, Alan Rickman, Glenn Frey... And that's just a few of the celebrities who have passed away in the past week or in 2016 this far... I barely even dare to open any social media or news page out of fear of more bad news right now.
I want to cry to relieve some pressure, but the tears just won't come for some reason, maybe because I often get a headache from crying so my body is being stubborn to avoid the headache.
I'm feeling slightly stressed as well, too many things I need to do, and so little energy to do it.
Next time I have a day with no plans at all, I'm just going to have some movie marathon and just relax! Might even start some tonight after I've finished the laundry (if I can even get outside, it's snowing at the moment) Just buy some chips, soda and candy and have a Star Wars marathon- I really LOVE those movies! Just wish I could see The Force Awakens whenever I want to, can't wait until it comes out on DVD!
In early February I'm heading up to Stockholm for a board meeting, that will be fun too even though it's a meeting. I'm part of an awesome team and we have fun while going through everything. I'm really looking forward to that weekend even though the long days and train journey to and from Stockholm really wipes me out for a week or two afterwards...
