Thoughts...

Well, as I'm starting to type this post, it has just passed 2am. What am I doing awake you may wonder. I'm in a way wondering myself. I think my current shoulder pain, elbow pain, wrist pain, ankle pain, back and neck pain just *may* play a part in me still being awake. Oh, and don't forget fingers that partly lock!

Things are really not that great at the moment. I keep going, and I stay positive so nothing bad there. It's just, I'm so low on energy and by that I don't say I sleep too little, I sleep as much as I need! It's body being tired. A day at work has gone from being a piece of cake, to being a daily struggle. Today my knees, especially left knee, has had its own life, being a bit like jello and just bending when least expecting it, making me almost loose balance quite a few times.

I went to physiotherapy again yesterday, and well, that just won't do it for me! It only took a couple of minutes of light exercise and my knee pain level got as bad as it can be after hours at work, and my left elbow locked in the middle of something! So physiotherapy is NOT for me!

My body is really in quite a downhill, and has been for the past couple of months. But whatever. I know I'm hypermobile and quite a lot too. The things happening to me doesn't really scare me, I just take it for what it is. I just know I won't be able to keep going at my current job for too much longer as it is physically demanding.

I have many things I'd like to do, or dream about doing in the future, all of which can be done from an office or even from home. Am I bitter about what my body is doing when I'm just 25? No, definitely not! I see it as a possibility to do things I wouldn't think of doing had everything been as it *should* be. Having to re-think things like I need to do now really feels like a new beginning, but not in a bad way.

I guess you could say it's a little bittersweet... I'll have to sooner or later give up a job I really like, but on the other hand, that will give me the possibility to study again if I wish to do so.

Now I should try to get some sleep I guess. 2:30am

Closer

Had the day off work today, due to a couple of appointments I should have made a long time ago to be real honest.
I saw a physiotherapist this morning for my hypermobility, an appointment that really was great! The physiotherapist really listened to me! I showed him a lot of the things I can do and he said I'm indeed very hypermobile. My knees bend backwards 15 degrees, 2-5 degrees backwards is OK, but definitely no more than 7 degrees, and I have 15 so go figure. I also found out that my elbows do indeed hyperextend- something I haven't been sure about as it is kinda difficult to see yourself.
My fingers subluxate many times daily, no matter if I want them to or not, even the most gentle pull will subluxate them.
It is likely my ankles subluxate daily too and my hip was on the way out once last week.
And I got a word of warning: It won't take anything for my knees to dislocate.
My knees have never dislocated this far, but the physiotherapist said they may do so from very little trauma. It can pretty much be enough if someone just bump into me a little and my leg is in the wrong position at the time.

We talked some about the Beighton score too, and the physiotherapist said I'd get 8 points out of 9 possible! The only thing I can't do is to put my palms of hands on the ground with straight legs, I can only get the whole fingers down without effort. Guess you could say I get 8.5 points then, plus a lot of extra points for the other "party tricks" I have which are not even measured on the Beighton score.

I'll now begin physiotherapy once weekly to help stabilizing my body a bit to avoid dislocating things.
After the appointment with physiotherapist I went to Field's to buy some workout clothes and shoes, and while I was at it, I dived into the optician shop there as well and made an appointment to have my eyes checked. Said and done, got an eye appointment for the afternoon. Went home and had lunch and then back to Field's to have my eyes checked, my eyesight had changed again so needed new glasses. That didn't surprise me at all as I've had my current glasses for two years now. Anyways, I picked a very nice pair and will get them in about two weeks.
Back home again for about another hour and a half and then off to see my doctor.
Went to doctor and got the referral to see Rheumatologist which is why I went to doctor today.
Tomorrow I'll call around to the various Rheumatologists in this area and see if anyone of them can take me soon. If they are not qualified to diagnose or rule out EDS than hopefully he or she can send me to see the EDS specialist in Rigshospitalet.

Both me and my physiotherapist agrees that I have to have a diagnose on this! Am I just damn hypermobile with a fair bit of pain? Or do I have EDS which is genetic?

As it feels now, I'm not 100% sure I'll work tomorrow. I really need to call those Rheumatologists and get an appointment as soon as possible. But mainly, and I won't lie now: My hips and knees hurt like fucking hell! And that's while just laying in bed... Elbows, wrists and fingers are painful too, but right now knees and hips are worse. However, I shall NOT take painkillers! I need such combos of various kinds it's crazy, plus that I do not want to become more resistant to painkillers than I already am.

Will see tomorrow. My plan is to go to work, but if my body is on strike I'll just have to take the lemons and make lemonade and focus on making those phone calls. Bit more peaceful to call from home than from work.

All in all today, busy and tiring day even without working, and I've found out I'm pretty much an over bendy, subluxing freak show ;)

Japan

I was the least to say shaken (no pun intended) by the news about the earthquake in Japan yesterday morning when I read through the overnight Twitter time line. Followed the news as much as I could over Twitter during my workday and watched news most of the evening yesterday. I'm very relieved that my friend in Japan is fine!

My heart truly goes out to the people of Japan and everyone else affected by the earthquake and tsunami!

Please, everyone, do what you can to help the survivors! Even a small donation can make a huge difference!

Today, this song is for the people of Japan, you're in my heart and thoughts!

Rubber days...

My joints are like rubber at the moment, and has been for the past few days at least. I don't bend them myself, but many joints just feel more wobbly and the pain level is somewhat up a little bit. Still at a level where I can avoid taking painkillers, but it is bugging me big time. I do however find myself standing with hyperextended knees most of the time when just standing normally- well, normally for me anyways. I try to stand properly but I just can't do it!

It's mainly my wrists, knees and left ankle that really annoys me now, they sound more than usual and just yeah, generally act up! Right wrist has been partly locked a couple of times today and when I get it back to normal again it's with one loud pop!

With this body, I'm definitely never going to have children! Just being a woman is bad enough!

Friendship

I have many friends, some I've known for most of my life and others I got to know only recently. Some who know me well, and some who know me less.
The friendship that makes me write this post is very special. It's a relatively new friendship, but at the same time it feels like we have known each other for years. This friend is very special, it's a friend who always manage to make me smile and laugh, and the only friend I have who makes me fall asleep smiling after we have been talking.

My friend and I are far apart as far as distance goes, but friendship is never far away with the help of internet.


My friend, you know who you are :) You're a great person and an amazing friend!