It's been a long time since I last wrote anything here. I've been pretty busy lately with working, studying, moving and not feeling great in general. My semester is about to finish now, have finished the written exam and only have the spoken exam left. I moved to my own apartment little more than 3 weeks ago now and no longer commute as far to work! I have a great 72m2 apartment with a stunning view from the 13th (actually 14th from ground level) floor.
With the move I also got a new doctor who I had an appointment with yesterday morning. And what a doctor! She is just outright amazing! She didn't just listen, she also had an idea! And when I told her I suspect I may have Ehlers Danlos Syndrome she even said it is possible going by how many of my joints are constantly achy and how flexible I am, plus that I showed her some odd stretch marks and scars. A regular doctor who actually knows what Ehlers Danlos Syndrome is! She could even spell it without asking! I didn't even need to use my long list of symptoms I had written down. Now I have a team of two professionals determined to help me. My doctor and my physiotherapist! The next step now is to see a rheumatologist (who can send me on to the hospital if needed) and my doctor said she may be able to cut the waiting time for seeing the rheumatologist as my problems are pretty bad and getting worse. Normally the waiting time to see a rheumatologist here can be months, she's hoping I can get to see one in just weeks!
I know it can be other things making my body give up on me like this, but no matter if I have Ehlers Danlos or not, my body is misbehaving and I want to know why! EDS is a heavy diagnose to get, but I'd rather know than not know. Whatever it is, I can deal with what my body is doing, I just want answers! I am at peace with the changes in a way. The pain is getting to me at times, but most of the time I can handle it and keep going like normal, whatever normal is ;)
To me "normal" is to be able to scratch all over my back without problem, or put foot up on something at chest height and tie my shoes with straight legs. Both those things make my workmates go all "OMG!" because they can't do it. It has also become normal for me to rest more and more when off work. It also happens I use crutches for walking outside on days my hands and wrists are not hurting too much. Other days I just walk unaided and hope my knees and ankles won't act up too much. My knees can be a bit wobbly and my ankles likes to lock. It's not a nice feeling when an ankle locks, it hurts!
I'll try to get better at updating here.
Laters
Friday, May 20, 2011
Thursday, March 24, 2011
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
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
Tuesday, March 15, 2011
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 ;)
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 ;)
Saturday, March 12, 2011
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!
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!
Sunday, March 6, 2011
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!
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!
Saturday, March 5, 2011
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!
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!
Monday, February 28, 2011
An extended weekend in my hometown.
Just got home from an extended weekend in my hometown, with my parents in my childhood home. It's been a nice but busy weekend indeed. I arrived my hometown in the late evening on Thursday, on Friday morning I took my cat to the veterinary for his annual vaccination and in the afternoon mum and I went to a nearby town to buy a new computer for dad because his birthday was on Thursday.
Saturday we went to have a look at a very nice 2nd hand store in my hometown just for fun, in the afternoon we went to Gothenburg to visit my Grandmother who has birthday today.
Yesterday I went to another nearby town to meet a couple of friends I know from a Swedish forum. They both have EDS of hypermobility type, though one of them has a touch of classical type as well as the hypermobility type. I truly had a blast yesterday, there we were, three young women, all with similar problems and it was so funny because we were all about the same height and about the same shoe size. We also compared our hypermobility a little bit and even though I'm not having a diagnose yet other than hypermobility/HMS, I was way more hypermobile than both my friends. The main difference between them and me is that my joints stay in place while they have issues with dislocating joints.
Today I had planned to just relax in daytime, preparing for my trip back to Copenhagen, it didn't turn out quite as planned. Woke up at 8:30 and stretched out a bit in bed only to hear a very sickening crack, very unlike the sounds my joints normally make, and with that sickening crack came instant severe pain in my right shoulder blade area! I stayed in bed for an hour extra, trying to rest the pain away but it didn't work. I could barely get out of bed because of the pain and once I got out of bed it was quite the struggle to have breakfast. Any wrong movement I do will cause a pain top bad enough to give me tears in my eyes and I have high pain tolerance.
Now almost 14 hours later I'm still in quite a bit of pain even with Naproxen and Paracetamol active in my system. Those painkillers didn't help for me at all! I'm not a big fan of painkillers, partly because they rarely work for me and partly because I'm not a fan of taking any medicine in general. Today I didn't really have a choice because I had to sit for 3 hours on an uncomfortable train back to Copenhagen, the whole trip back to Copenhagen took me over 5 hours from door to door.
My friends I met yesterday suggested I go to ER today, but I'll wait and see how it feels tomorrow. I don't even know if it is possible to dislocate anything in the shoulder blade area, but if it is, I probably had my first dislocation or subluxation today :/
If the pain is at this level tomorrow, I'm going to see my doctor or go to the ER!
All in all, it's been a nice weekend even though it's been everything but relaxing ;) The pain I got today is just a hiccup :P
Saturday we went to have a look at a very nice 2nd hand store in my hometown just for fun, in the afternoon we went to Gothenburg to visit my Grandmother who has birthday today.
Yesterday I went to another nearby town to meet a couple of friends I know from a Swedish forum. They both have EDS of hypermobility type, though one of them has a touch of classical type as well as the hypermobility type. I truly had a blast yesterday, there we were, three young women, all with similar problems and it was so funny because we were all about the same height and about the same shoe size. We also compared our hypermobility a little bit and even though I'm not having a diagnose yet other than hypermobility/HMS, I was way more hypermobile than both my friends. The main difference between them and me is that my joints stay in place while they have issues with dislocating joints.
Today I had planned to just relax in daytime, preparing for my trip back to Copenhagen, it didn't turn out quite as planned. Woke up at 8:30 and stretched out a bit in bed only to hear a very sickening crack, very unlike the sounds my joints normally make, and with that sickening crack came instant severe pain in my right shoulder blade area! I stayed in bed for an hour extra, trying to rest the pain away but it didn't work. I could barely get out of bed because of the pain and once I got out of bed it was quite the struggle to have breakfast. Any wrong movement I do will cause a pain top bad enough to give me tears in my eyes and I have high pain tolerance.
Now almost 14 hours later I'm still in quite a bit of pain even with Naproxen and Paracetamol active in my system. Those painkillers didn't help for me at all! I'm not a big fan of painkillers, partly because they rarely work for me and partly because I'm not a fan of taking any medicine in general. Today I didn't really have a choice because I had to sit for 3 hours on an uncomfortable train back to Copenhagen, the whole trip back to Copenhagen took me over 5 hours from door to door.
My friends I met yesterday suggested I go to ER today, but I'll wait and see how it feels tomorrow. I don't even know if it is possible to dislocate anything in the shoulder blade area, but if it is, I probably had my first dislocation or subluxation today :/
If the pain is at this level tomorrow, I'm going to see my doctor or go to the ER!
All in all, it's been a nice weekend even though it's been everything but relaxing ;) The pain I got today is just a hiccup :P
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