Big meeting tomorrow.

Have a big meeting tomorrow at 9am, stupid ass time for a meeting when the person the meeting is about (me) is a hopeless insomniac who's often kept awake until the early morning hours either by pain like last night, or having a mind working like a washing machine doing the spins, or a combination of both. Anyways, last night I didn't sleep until I think 5:30am this morning and I woke up several times during the morning despite having taken Zopiclon before eventually trying to sleep.

The big meeting tomorrow consists of me, my doctor, my occupational therapist, my contact person from the citizen office in my town, a person from the employment office, my contact person at the national insurance thingy and maybe someone more I just don't know about now, or have forgotten. Basically, this meeting is going to "decide" what I can and can not do because of the fact that I'm currently long term sick and unable to take a conventional job or even do some kind of internship. I know my body best, and if they try to push me towards taking a part time job or internship, I just know it won't work!

Reasons why it won't work?:
- I don't sleep
- I have difficulties to focus on things for more than a few minutes at a time
- I can't sit on a chair at a table for more than a few minutes
- I can't stand up for more than a few minutes
- I can't walk well, even with crutches
- I can't drive every day
- I'm constantly fighting severe fatigue
- I can't commute
- Stress makes me feel worse
- I'm in too much pain
- I spend most of my time either in bed or on a sofa, trying to be as comfortable as possible

I've had over a year to think of what CAN I do within the conventional work market, and after many months of looking through job advertisements and thinking, I've found out that I can do absolutely NOTHING out there on the conventional market. If I am to work at all, and not retire due to my health, I can only work from home, at times which fit me and without pressure to perform every day, as some days I'm just too tired to even think.

I'm also going to bring up wheelchair again tomorrow as my occupational therapist and doctor will be in the same room at the same time. I know I've read somewhere that EDS patients that can't walk unaided should avoid crutches, canes or rollator at any cost! If aid is needed, wheelchair it is. I just can't find where I read it so can't print it and bring tomorrow! But I have read it somewhere, and here I am, having been on crutches for the past 7-8 weeks due to dodgy knees and a bad hip. My hands HURTS and my shoulders are really bad now, my left shoulder subluxes for basically nothing. I know self propelling a wheelchair isn't easy, but at least each roll of the wheels gets you further than a step on crutches, and someone CAN push me in a wheelchair if needed, no one can help me when I'm on crutches.

And for those who think I'm lazy. You're WRONG! Do you really think I enjoy being at home doing little or nothing all day? Do you really think it's fun having just turned 27 and having to consider retirement already? Do you really think it's fun having to stay at home because legs won't work properly and crutches are too tiring and painful? Do you really think I WANT to be in a wheelchair and have people stare at me more than they already do?

I WANT to work, I miss the days where I'd work full time in a warehouse, commute an hour each way and play table tennis around the table in my breaks. I miss not needing any aid to walk, I miss functioning without strong painkillers with me, I miss being spontaneous with going places, I miss being able to spend a day out and not ending up in bed for days afterwards. I miss my old life, the life I had before EDS showed its ugly face on full time!

I'm choosing to get a wheelchair because I NEED one, to get a part of my life back, be able to be outside more and go places without wasting all my spoons on it as fast. I want to be able to have a day out at a mall with family or friends, without needing to go back to the car minutes after arriving. With a wheelchair I might even be able to try going out to a bar if I want to. I wouldn't be able to as it is today as I can't stand in line, can't sit on uncomfortable chairs etc. A wheelchair will give me a part of my life back!
The days of wheelchair racing through the corridors of a nursing home are long gone, it was fun then, when I was a child and borrowed my adoptive grandmother's wheelchair. Now I need one (much lighter than the chair I played in during my childhood!) to get some of my mobility back.

Right... I should remember to mention my pain levels tomorrow in the meeting as well, see if the doctor can do something about it there and then already, but most likely I'll need to make a separate appointment.

At the moment, it's unbearable a lot of the time and I've taken painkillers almost daily lately to cope...