A little bit of this and that on a not so good night...

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...

Thoughts and travels

I haven't written in a long time now (again), the summer has been pretty busy and I've been pretty tired too.

I'm currently in a period of watching movies a lot to have something to do while resting, the movies of choice at the moment is the Star Wars movies as I've always loved them all, and have been fascinated with the universe ever since I was in elementary school. I even dreamed of becoming an astronaut when I was in 2nd grade...

The Star Wars movies are interesting too as they may very well be reality in another galaxy or a parallel universe that we just have not found yet, nor have the technological advancement to visit today.
I firmly believe that we are not alone in the universe, and I firmly believe that there's intelligent life somewhere else in the universe, intelligent life that makes us humans on earth look like cave men in comparison.
I also believe that our definition of habitable may not apply for all kinds of intelligent life. Maybe on another planet, the inhabitants breathe another gas than oxygen, and consider oxygen as bad we do with for example propane gas when it comes to breathing.

Our knowledge about the universe is also very narrow even though we know a lot more about it today than we did 100 years ago. Today we're still lacking the technology that is needed to explore more, and we're yet to develop a way of transportation that can cover great distances in a reasonable time. But I firmly believe that in the future, deep space travel will be quite possible. It's all about finding out how. In another galaxy we don't have the technology to explore yet, intelligent life forms may already be traveling between planets and planet systems. We just don't know about it because we can't see it and have a hard time imagining that there may be life out there that is greatly ahead of our own intelligence and technological advancement.

As for traveling, I haven't been to deep space *duh* but I did travel some last week. Last week a couple of friends and I were on vacation to Crete. It was my first charter vacation since 2002 and it was absolute bliss to just spend a week by the pool and sea, and catching some sun and enjoying the warm weather! Managed to not even get burnt in the sun, despite spending all day in the sun by the pool and the UV index reaching 10 (it reaches 5 here in summer, 6 if the ozone layer is unusually thin), SPF50+ kept us safe! I did feel better in Crete as well, not as much pain as I have at home, most likely due to the warm weather and the humidity being just right for me, I felt a bit more like a well oiled machinery. Same effect as I had in China in 2010 actually. I wish I could be in that environment more...

I absolutely love Crete! Just wish the accessibility was better so I could explore more. I had to leave my wheelchair at the hotel room all week because it was not possible to use the wheelchair due to narrow sidewalks, high curbs and such, so I mostly stayed at the hotel as my ability to walk is very limited. But other than the poor accessibility, I love it! Crete has such stunning scenery, and the people are so kind!

Now I've been back home since Saturday morning, and I'm paying physically for the trip as I did walk too much while in Crete and the flight took a toll on me as well. I've been in a lot of pain this week and felt very tired. My lower back, SI joints, hips and neck are not pleasant at all... Just today I have been mostly bed bound due to a bad headache from my neck, and had to wear my Aspen Vista collar to manage to attend an important meeting. Earlier in the day I couldn't even be upright without feeling like my head was about to fall off of my neck and explode.
A couple of days ago I was just sitting in my wheelchair at a neighborhood meeting and as I was going to fill a cup of water by the sink, my left hip subluxed just by me turning around slightly in my wheelchair.
My joints are unstable in every direction, and it seems, especially sensitive to being pulled. Even a very slight pull in a finger can completely separate my joints in that finger and my wrist for example. A slight pull on my arm and I feel my shoulder separating. So maybe me turning in the wheelchair a bit was enough of a pull for my hip to try to take a stroll on its own.

Now I need to try to take a shower. I'm really too tired, but I don't want to look like shit tomorrow when going outside, it's really enough feeling like shit most of the time without looking as bad as you feel...