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!