Struggling

Haven't had much time nor energy to write for a while. I'm not in a great place at the moment as I've been too much as ever so often. I'm currently in a bad pain flare, my entire body feels like a huge bruise and my spine is like a misaligned mess which feels like it's been beaten badly and I have some kind of very deep pain in my spine and a feeling of things moving where it shouldn't be. My neck has been giving me spooks for days as well, with so much pain I've been feeling nauseous from pain, and my autonomous nervous system has been rather haywire as well.

Quite frankly, I'm feeling pretty damn awful! I try to hide it though, and still do things. Yesterday I went to help hosting some international guests and inform them about how we work in the organization for mobility impaired youth where I'm a board member. I really shouldn't have gone, but I wanted to, and knew it would be helpful for the others to have me there because I speak English better. Right now though, my English feels like a mess because it's kinda difficult for me to think clearly while being in this much pain- I'm seriously considering taking a rapid acting tablet right now, and I took a long acting earlier tonight, plus having my usual patch. I'm in so much pain I just feel like screaming and crying, but it wouldn't help to scream so I just try to breathe through it and think as many profane words as possible while listening to some music.

I'm seeing my doctor next week, as I turn 30 in about 6 months, it's time to talk future and permanent disability as my current disability expires when I turn 30. I haven't been able to work for 4 years, so permanent disability is the only way to go. I also need to start the process of getting a powerchair with joystick as there are times where my manual wheelchair just doesn't do it, like in winter when there's snow- I just can't propel when there's snow on the push rims. And quite often when I'm out and about for a whole day, I'd need to be able to tilt the seat and recline the back to ease the pain when I can't just go lie down for a while. Being able to literally lie down in the wheelchair would be very good for me! The powerchair would also have more support and positioning than my manual chair has, so maybe I'd even be able to use public transit with it. In my manual wheelchair the vibrations and movements of a train absolutely kills my SI joints and spine and neck. A powerchair for me will have the positioning cushions for the thighs and torso, plus a headrest so my neck will have the proper support, plus I'd be able to tilt some while traveling.

As for my manual wheelchair, I'm getting another wheelchair cushion soon that is much more stable than my current Varilite Meridian cushion. I'm getting the StimuLite Contoured Extra Sensitive cushion instead, was supposed to be just the Contoured but my region doesn't have it, only the Extra Sensitive version is available but oh well, the only difference is that the Extra Sensitive is a bit softer, I tried both versions at an expo a couple of weeks ago and both versions were really comfortable, though the Contoured felt a bit more stable which is why it was my first hand choice. I'm sure it will be great anyways! After the summer Panthera is releasing a new generation of wheelchairs so I'll most likely change manual chair then, going to try to get the carbon fiber Panthera X, but if my region refuses that, I'll go with the new U3 Light. I was told a couple of weeks ago by staff from Panthera that there's no reason whatsoever for me to be in an S2 chair when I'm so independent and do everything myself, I should have a U2 Light (or U3 Light) or preferably a Panthera X to have a chair that is as light as possible both for when I propel and for the lifting in and out of car and up and down stairs. The Panthera X weighs 2.1kg without the wheels on, that's about 5lb. For someone with wobbly joints like I have, a chair that is as light as possible is definitely a good thing! I tried a Panthera X at the expo as well and even though it wasn't the right width or anything, I got an idea of how the chair is to sit in, and it is absolutely amazing! It was my first time trying a wheelchair with very tapered front as well, and it was incredibly comfortable with the tapered front helping holding legs together! Now when I sit for a long time, I use my SI belt around my thighs to hold my legs together without having to sit and actively hold them together, it helps my hips and SI joints a lot to not have to use muscles to hold my legs together, and it's definitely better for my hips to not have my legs falling apart which happens all the time when I sit relaxed. I need something holding my legs together!

Next week I'm also meeting with an assistance company to discuss my needs and see if that's the right company for me to help me. Everyday things are becoming more and more difficult to manage, even simple things like taking a shower takes a lot of energy from me and I am not really safe taking a shower while alone at home. In the past few days, mum has been at my place while I've been in the shower because I have been feeling so poorly I was worrying about getting unwell in the shower. I can't keep up with the housework as I'd like either, because it's physically too heavy for me to manage and takes too much energy from me along with high risk of injuries and pain flares. I can't vacuum clean nearly as often as I'd like, I need to have an unplanned week basically, just to vacuum clean my living room and entrance!
I need to vacuum right now, but just can not do it! If I still can't do it in a few days time, I'll probably have to ask mum to do it for me.
But it's not my parents work to look after me! I'm almost 30 years old and even though I live in the same neighborhood as my parents and we have an amazing family relationship, I have my life and they have their life. They shouldn't need to worry about me when they go out in their camper over the weekend or on their annual 4 week vacation, or if they go on a week long bus trip. But as it is now, they do worry! They worry that I won't be able to cook for myself or have the energy to eat properly, they worry about me getting dizzy and almost passing out in the shower, they worry that I won't be able to go get groceries due to being too fatigued, they worry that I'll get a lumbago while picking something up from the floor or scoop poop in my cat's litter box, they worry about the risk of me falling and not being able to get up by myself. When they're at home and I don't pick up the phone or read/respond to a text message within a certain time, mum or dad will come over to check on me as they fear I've passed out! It will be so much easier for me, and so much easier on my parents if I get a personal assistant to help me out with the basic needs and around the house, and go with me when I go out of town= having someone who can drive when I can't or feel I need a break from driving.

I need to discuss my neck more with my doctor as well. I'm having far too many symptoms of CCI and nothing is done about it. I may very well need to look into traveling abroad to see an EDS knowledgeable neurosurgeon to get proper answers and treatment.

But none of that can be done tonight. All I can do is wait for my rapid acting medicine to kick in (I took a tablet not long ago) and then try to sleep, and prepare for a meeting tomorrow and start writing down everything I need help with so I am prepared for my meeting with the assistance company next week and my doctor. There are so many things I need to think about and remember, it feels like my brain will explode soon!

But on a brighter note, I'm getting an iPad Mini in a couple of days. My cellphone service provider called me yesterday and offered a good deal on an iPad Mini with 15GB surf each month at a good price, so I went with it! I have an old iPad 2 from 2011 but it's so heavy to hold I rarely use it, plus the mobile broadband I have on it, while no monthly fee, there's a daily fee for when I do use 3G on it so I rarely ever use anything else than wifi on it. I think the iPad Mini will be great, much lighter both due to size and it being newer, and with the internet plan on it, I won't need to think about when to use it away from wifi, I can surf as much as I like, wherever I like and I have a feeling I'll be using that iPad a lot and bring it with me very much! Really looking forward to its arrival! Hoping it will arrive already before the weekend!

Now I need to try to sleep, I'm still in ridiculous amount of pain, but the tiredness is getting overwhelming. I just wish this pain would ease just a little at least, or at the very least, not feel this goddamn bruised!

Random music thoughts

I have decided that I need more music in my life, not just by listening to music but to actually play an instrument myself again. I have a rather big keyboard and a violin, the violin is terribly out of tune though, and the keyboard is quite bulky, it really needs to be on its stand when playing but then it takes too much space so I tend to keep it on my lap which is pretty painful, plus some of its keys are weird, don't know why.
Anyways, I can probably tune my violin if I want to, but I'm not too sure about my neck agreeing with playing violin these days. So I've decided that I'm going to try guitar instead! I'm going to buy an acoustic guitar and try to learn some on my own with the help of YouTube tutorials and by listening to my favorite music. If Freddie and the others in Queen could learn their instruments on their own and on top of it write the most epic music ever written, then I should be able to at almost 30, learn to play some! My overly hypermobile hands may even be a benefit for playing since I can reach pretty far between one finger and the other, something that was an advantage already in my violin days well over 10 years ago. I took lessons between August 1996 and April 2002 so yeah, it's quite a long time ago now!

To start with, I'll just buy a really cheap guitar, no use spending a lot of money on something I don't know if I'll like or can manage. But should I end up having any talent I may consider buying something better then.

I've pretty much settled with going with a steel string acoustic guitar after asking around and trying to research some about the different options.

To me, music is so much more than just music, it's a way for me to manage my pain as I can hopefully numb the pain some by focusing on the music I listen to at the time. I'm hoping that playing guitar will keep my brain busy as well.

Annoyed...

I've been mostly bedridden for the past week now due to bad breakthrough pain and fatigue, most likely for having overdone it for a long time lately. I should be asleep by now, it's already 4:30am as I'm typing this, but there's just too much going through my mind right now. 

I'm bothered by a fair bit of things at the moment, not just my body acting up even though that certainly is the most annoying right now as it greatly limits me more than I'd like. 

But the other, non physical things then... 

I'm royally pissed off with the Swedish Ehlers-Danlos Syndrome organization! They have been around for 22 years now and in all those years, they've not gotten much done at all, and they still go around spreading misinformation on their medical ID cards by writing certain issues as if they apply to everyone with Ehlers-Danlos Syndrome, instead of writing it as something that may be the case for someone living with the syndrome. By writing it the way it is, people who do not have that particular issue may be questioned whether or not he or she has Ehlers-Danlos Syndrome, even though the individual has the diagnose. The most annoying bit is that the organization has on the cards that the skin is elastic and tears more easily, instead of saying skin MAY BE elastic and tear more easily. 

By writing is, individuals who have very little or no skin elasticity may be questioned, and it happens all the time anyways. Even people who are diagnosed by a geneticist may get questioned by a GP, just because. Elastic skin isn't even a formal criteria for diagnose any longer, it's just mentioned as something you may find in individuals with Ehlers-Danlos Syndrome. What we do have though, is some kind of skin involvement, just not always elastic. 

My skin is only mildly elastic, it's to the point where I wasn't even diagnosed by a clinic in Denmark who only cared about the skin elasticity despite me having all the major and many minor criteria for Ehlers-Danlos Syndrome. I know I'm not the only one who wasn't diagnosed there though, and I'm far from the only one who wasn't diagnosed sooner, just because of doctors caring too much about the skin being elastic or not. 

My skin is velvety smooth, mildly elastic and with some abnormal scars and striae, people who know me in person even say I'd probably fit into Classical type EDS, but truth to be told, my exact type hasn't been determined, we just know I do not have Vascular EDS. My official diagnosis is Hypermobility type, but that's like the standard you get if they don't know how to determine type. I'm guessing I may be Hypermobility with classical crossover though. Maybe one day I'll have proper answers on that, but for now, I don't really care as I do have the diagnose confirmed by two different doctors and before that, strongly suspected by another. 

It just does bother me though, that the Swedish Ehlers-Danlos organization seem to not give a damn about people who have little or no skin elasticity and when you suggest improvements or changes to them, you may as well talk to the wall. I'm not a member of the organization even, I've heard too much negative experiences from members and former members, so why would I join an organization like that? They have too many people who have been on the board for the organization for too long but refuses to step down, they don't want improvement apparently. So fuck them! 

A good friend and I will make our own medical ID cards instead, that has the proper information on them. 

I know that people having such a card already has the diagnose and the card isn't intended as a tool to diagnose people, but the fact remains that you are questioned all the time regardless of which doctor has diagnosed you. So having information written by the old criteria, may be dangerous for individuals who don't meet that one criteria which most doctors tend to feel the most fascinated with- they always want to pull your skin to see how stretchy it is or isn't! 

So yeah, royally pissed! And it's kinda hard to type at the moment so I don't know how much of this even makes sense. I'm tired and in pain... Now I shall try to catch some sleep!