It's been a while again.

I haven't blogged anything lately. Guess I've just been too busy or not in the mood or not known what to write. Thing is, I don't really know what to write today either, I just thought I'd give you all a brief update on things. Or well... A lot has changed lately! I won't be studying in Lund and I will be moving back to my hometown as soon as I possibly can- I'm currently in Q for an apartment there. My health situation is scaring people who care about me. I can't be this far away from family all by myself. In the past few weeks I have had dizzy episodes with loss of vision and hearing and numbness of arms and legs, it's by pure will power I managed to not pass out! My doctor and I are currently trying to find out what's causing me to nearly pass out. It has been happening from time to time since my teens, but it's gotten worse now. I will wear a heart monitor for three days in beginning of December, maybe that will give some more answers, a regular EKG didn't say much last week. Joints are still as loose and floppy, my net sister even suggested I look into getting a wheelchair before I have to have one. Not too sure what to think about it really. I prefer to not even wear braces on my joints and I am constantly fighting the will to just rip the Fentanyl patch off and not put another one on because I hate them for what they are! The patches helps, but I simply just HATE being on those damn narcotics! I've been on the patches for little more than a month now. It makes me feel better, but I'm still hoping to just learn to live with the pain because I do not want to be on painkillers! Oh, and study wise, Gothenburg University will have to do as it is within commuting distance from my hometown (about 40 minutes by train from hometown to Gothenburg). I'm not too happy about that, but it's a good school too so I'll have to live with it...

Takida- Curly Sue

Just wanted to share this amazing song :)

A random post at 3:30am

Haven't had the best of days study wise. Been difficult to focus and keep forgetting things all the time. Hate when that happens! Makes me feel more stupid than a 5 year old :( For a while I was even seriously considering to hit myself in the head with the books. That approach has helped in the past. I was hit in the head with an Atlas in 4th grade, after that I scored top marks on all geography tests ;)

Don't worry, I ended up not hitting myself in the head with my books today. I have enough headache as it is!

Oh, and it's another night of insomnia. I think I may as well enter the lottery soon and move west, maybe I'd get normal sleeping habits then!

Been a few days...

I haven't blogged for a few days now and for a good reason. My EDS or HMS is flaring, making my joints hurt more than usual along with increased fatigue and increased feeling of instability in my joints. I have been saving my ability to type for chatting with friends rather than updating my blog as my wrists are pretty bad and hands hurt.

To put it simple what this flare does to me: A couple of weeks ago I could easily walk 5-6 miles in one go. Now I nearly fall just by walking from my bedroom to bathroom or kitchen because my left knee and hip is feeling so wobbly.

I miss my long walks now, but other than that this flare doesn't bother me much.

Other than this flare, I'm doing fine. Motivation is still on top and I'm trying to study maths and physics daily, though my body won't currently let me study as much as I'd like.

Hoping my best friend will have bit more time to chat soon. Miss our long chats and talks :(

A short post.

Sometimes you just can't control your heart's choices.

The positive things greatly outweighs any risks.

It's not without reason I say the things I say.

That is all I have to say today.

Now I shall continue to listen to music.

Planning for the future a bit

Looking up Universities in Sweden, to see if there are other schools I could imagine studying at. This far Lund University is still my first choice, now closely followed by Uppsala University. Lund is close to where I am now. Uppsala is a bit north of Stockholm on the east coast of Sweden, which would actually mean further away from home than I am now even. On the other hand, Uppsala, like Lund, is famous for the study atmosphere. Both universities are very old, the two oldest in Sweden even and Lund and Uppsala compete against each other a bit, like some of the top Universities in USA does.

I know one thing is for sure anyways. I DO NOT WANT TO STUDY IN STOCKHOLM!

I'm also looking into the possibilities to take part of my education abroad, likely in the USA. Just looking it up a bit when having nothing better to do ;)

Now I shall study some I think. The fact it's 2:09am doesn't mean a thing to me, I'm wide awake.

Well, it's official!

I'm on sick leave from work until last of September! My doctor agreed it is better for me to rest at home and pace myself as it does make me feel so much better! I'm even able to exercise now, and I do not need to take painkillers!

Other than that, I finally got my books on Tuesday and have started studying maths and physics at home :)

Changes....

That's it! I've had enough! I'm changing my life, starting yesterday! Not saying more now ;)

People's reaction

People react rather differently when I tell them about my plans to study and what I want to study. Most people are "Go for it!" and then there are some that look or sound like they've seen a ghost! Seriously, is physics really that scary? Sure, the equations are out of this world, but I personally can't wait until I can read them and understand what they mean!
I find it pretty entertaining to see or hear people's reaction to it all.

As it is today, I can sit and read the texts of theories, but the maths mentioned doesn't make sense, maths is a language I'm not fluent in yet, but I shall get there eventually! I'm determined! I shall learn it all!

Restless...

I'm still waiting for the books I ordered during the weekend. Apparently my order is being handled now. I Sure hope I'll have those books tomorrow or I probably won't have them until Monday! I just want to start reading!

I'm a pretty restless person. I have to have something to do at all times. I can't just sit and stare at the ceiling. Now when I'm not working (am on sick leave) I'm literally bouncing off the walls if I have a day with nothing to do! Just watching TV or playing games on PS2, PSP or computer just doesn't do it. I need to do something creative, like reading and by that I don't mean reading novels!

On another note, I overdid it today, went grocery shopping, cleaned the kitchen and cooked dinner all in just a few hours. All that with a back which would barely let me get up this morning, and knees which feels a bit like aching jello from time to time. I couldn't care less! If I want to do something, I do it!

So, daytime today has been pretty productive :) Plans for tomorrow, or actually daytime today as it's nearing 2am, involves 2-3 machines of laundry and a general sweep over of my apartment :) And reading, if I just get my books!

Interesting...

I downloaded some lectures from iTunes U yesterday. Some physics lectures. I watched a couple of them, just to see what kind of things I'll be dealing with later on and to my great surprise, I could understand some of it and felt I'll definitely be able to learn it once I'm familiar with the maths involved :)
This just makes me feel even more sure about my choice of future studies!

It's a really great feeling :)

5am blogging...

Not a long one day. All I can say is, I feel like a too tense guitar string about to snap from the tension :( Not knowing does that to me...

Late night blogging again again again

It's now 1:40am as I begin to write this. I haven't done much today, I wanted to do a lot, but have been unable to focus on anything, those who know me more personally may know or guess why... I won't say it out loud here on my blog anyways... Was at least trying to study some maths in daytime.
And I got pretty thrilled about the news they just may have found the elusive Higgs Boson at last! First at CERN on the Swizz/French border and a couple of days later, Fermilab in USA announced they may have found the Higgs Boson as well. Will be interesting to see if they have indeed found it this time! It will take a while to analyze the results according to the news report.
http://www.independent.co.uk/news/science/breakthrough-hailed-in-quest-for-god-particle-2319902.html

So, what is the Higgs Boson you may wonder. I am certainly not the right person to answer that, I only know very very little and can't explain it well, so you'd better hit wikipedia on this ;) http://en.wikipedia.org/wiki/Higgs_Boson

Just pretty funny how the scientists have been looking for this particle for so long, and suddenly it may have been found in two particle accelerators within a couple of days of each other.

Either way, it's exciting and I'll try to follow these news :)


For some reason, blogger won't post the links as hyperlinks, I don't know why! You'll just have to copy and paste if you want to read the links.

Late night blogging again again...

It's now just 3:20am, I'm not even beginning to feel sleepy yet. Missing my best friend who seems to have a busy afternoon/evening today, that happens sometimes. Hopefully catch up in the morning instead :)

Ordered some more books earlier, can't wait until I have them! I just want to start reading! Have been studying maths quite a bit today. Found this great webpage called maths.com which goes through pretty much everything from 1+1 to calculus and "worse" and has many videos showing examples too, it's really a good webpage! I'll use that page a lot for my maths studies! Even Algebra is starting to make sense with the help of that webpage ;) Now if physics could have a webpage like that too, I'll learn in no time!

I really want to learn it all, motivation is on top! When I read really complicated physics things now for recreation, I wish I could understand it all. That must say something, I've finally found what I want to do! I wouldn't even look at it if I wasn't interested in it. One day I will learn it, and read those texts again and have it make sense :) I'm determined!

Ok, nearly 4am. I'm still not sleepy! Think I'll just study some more maths!

It doesn't happen all too often...

Today I'm actually blogging in the early evening! Not saying I won't write another blog sometime in the early hours of the morning later though. I just thought I'd post something now.

Have ordered three books today, one book about Physics and two books about maths, just to prepare for what shall come ;) Will get the books home in a few days time and I'm really excited! Just want to read them NOW!

At the moment, I'm in a complete nerd mood! Motivation is on top and I just want to get started with my planned studies!

Late night blogging again.

I seem to always blog at night for some reason. I am a born night owl and I don't sleep very much.

Been looking into studies even more today, it is now leaning very much towards Lund University! They don't just have the Physics program but also Theoretical Physics. Which one I will choose is not yet decided, I'll see which of it that covers my field of interest. I have at least found a course I'd very much like to take. That one kinda belongs to Physics, but I guess I'd be able to study it even if I end up with Theoretical Physics. Anyways, the course is called Particle Physics, Cosmology and Accelerators. It sounds really interesting!

I feel so motivated at the moment! I just want to start studying!

Random thoughts of an overactive mind

For the past few days, my brain has spent a lot of the time planning and even more time thinking. Reading up on random complicated things and studying some maths in between.

The odd random thoughts of an overactive mind today is related to the universe. I'm kinda doubting the Big Bang theory a bit, along with wondering if the universe has an end or if it just keeps going and going forever. And if the universe has an edge, which would barely have a sign notifying anyone, what's there, beyond the universe? Theories says the universe is still expanding, so surely there has to be somewhere where universe hasn't reached yet, what is there?

This kind of thoughts surely doesn't help me beat insomnia, but I really couldn't care less! I'm more interested in thinking than in sleeping! I will and I do sleep when I'm tired ;)

University plans!

I have made some big plans these past few days. I already know I can no longer work in a warehouse, and taking a regular office job would just bore me to world's end and be a waste of brain power.
I've heard from many that I'm too intelligent to do a physical job or just a random job. It is time! Time to walk down the path of academics! I have not known what I wanted to study before now. Now I'm pretty sure I know!
Due to being sick of school in Jr. High, I went to the wrong type of high school- one focusing more on practical knowledge than theoretical. It's something what has been haunting me ever since I graduated in 2004!
I now have to deal with most of the high school maths, and all the high school science to be able to apply the University program I want to study. But that should be fully possible. I'm not stupid, I've just been unfortunate with schools and teachers in the past. With the right motivation, which I feel I have now, I can reach the stars if I want to!
What I want to study at university? Well, science of course! I may study either Physics or Chemistry, or Biochemistry.
I'm a nerd, and I'm damn proud of it!

I want to study again, now is the right time to do it! I'll soon be 26, I can no longer do my current job and I finally know what I want to do with my life!

I know it will be hard, especially maths will be hard as I've got more talent for languages than maths. But I can and will do it!

I'm now trying to decide which University I'd prefer to study at. I'm choosing between Lund University which is very old and internationally well known, with an amazing study atmosphere and true academic feeling in the whole city. You could pretty much say Lund is a University and it happens to be a city as well.
Then there's Gotenburg University, I've never been studying there but know it is a good University, I also have my family in or around Gothenburg which means I'd be close to my family again if I go to University there. On the other hand, I never get the cozy feeling when I'm in Gothenburg, it's just a city which happens to have a University.
So which should I pick? It will be a difficult choice as I'll be studying for four years at that one University unless I exchange and study abroad some too. Should I pick the amazing academic atmosphere, or being close to my family? I'll obviously apply both Universities when I get that far with my maths, I hope to start studying at University in autumn of 2012.
I've been living 400km away from my family for the past 5 years next month, only seeing my family a few times every year. Still, even if I choose Lund (which feels most likely), I'll at least be a bit closer to my family, about an hour closer compared to the travel time I have now.
I really like Lund University and the whole city of Lund. It's the most academic city in Sweden! Just walking down the streets in Lund and you pass by a University building every few steps, it really gets you in the mood to study!

Now bring on the maths! I'm so motivated for this! :)

Because awareness matters!

Those of you reading this who are on Facebook. I've found this great cause, and it would make my and many other's day if you care enough to join and help spread the word to everyone you know!

http://www.causes.com/causes/244658-official-national-marfan-foundation-cause

Together we can make a difference!

For some reason the link doesn't become a link when I add hyperlink, but the title of this blog post will also take you to the cause.

Now let's beat at least ONE FarmVille cause! ;)

Because awareness matters!

Late night rambles

It's about 3am when beginning to write this post. I'm wide awake, listening to music pretty loud in earphones and have no intention to sleep anytime soon, not because I don't want to sleep, but because my body tells me it doesn't need to sleep at the moment.

I was born night owl! I've heard myself on old tape recordings from 1987 when I was about to turn 2, the grown ups (my parents and an elderly couple we used to go out camping with) were trying to make me sleep at 11:30pm and me proclaiming loudly "Don't want to sleep!" in very childish Swedish.
It's just natural for me to be up this late, I don't usually need much sleep at all. I have many nights of only sleeping for 3-6 hours, and can do just fine on less sleep too.

Maybe my body is permanently in the wrong time zone? I dunno. I just know my lack of sleep surprises many around me. I'm often awake until 2-3 in the morning even when I need to get up to work in the morning.

I love sitting up at night, it's so peaceful! And it also means I can spend time chatting with friends in USA and I have pretty many friends in the States. Sometimes they're off to sleep before me even ;)

Enough late night rambles now. I'm going to continue listening to music until I'm tired enough to fall asleep!

Considering leaving Denmark

As some of you may or may not know, I'm Swedish but living in Denmark since 2006. The five years in Denmark has had its ups and downs and given me valuable life experience that I'll always carry with me.
I've come to a point in my life where I feel there's little or nothing keeping me in Denmark any longer. I like my apartment very much, but that's really about it. I don't have many real life friends here, and the couple of friends I do have here are from work and they have families so we don't hang out after work. And then there's work... Well, to put it simple, I can not do it any longer! I've had it, seriously! My body can't cope with physical work any longer, it's time to find an office job, or work from home!
My plan now is to look for a new job, in my home region of Sweden and move back to Sweden sometime after Christmas, probably to a city not far from my hometown. I have several real life friends I've met on a forum in that city, the city has a college, a big hospital in case my joints needs it, and excellent train connections to my hometown which is just 50 minutes away by train or about an hour's drive.
So when I have moved, I'll have real life friends in the same city and I'll be very close to my family, my childhood friends and many of my high school classmates as the city I'm planning to move to is very close to where I went to high school.
I'll be close to friends and family, but still live in a city and still have some privacy.

I think there's only one thing I'll miss when I leave Denmark. My doctor! Other than that, I'm just really looking forward to moving home to my homeland again, where the living standard is generally better too. Now there's nothing wrong with my apartment here in Denmark, but in Sweden it's pretty much unheard of to have the shower connected to the bathroom sink ;) In Sweden we have separate water supply for sink and shower!

The city I'll move to only really has one downside, it's pretty far from any bigger airport, like 1,5h by train and another 30+ minutes by bus. But let's face it, how often do I travel?

Long time no post

I haven't been blogging much lately. There are several reasons for it, but the main reason is probably the fact that I haven't been feeling well and been very busy.

There's a lot going on in my life at the moment, I'm trying to get a diagnose on my health problems. Both me and my doctor suspect it's Ehlers Danlos Syndrome and I'll be going to hospital in September for a proper EDS test. I saw a rheumy in early June, and that was the worst moron I've ever seen calling himself a doctor! The only thing he got right about me is the 8/9 on the Beighton score.

In early June I also had to spend a few hours in hospital due to a possible heat stroke when it was just 20 degrees outside. I started feeling really nauseous and weak, and lost sensation in arms and legs, I very nearly passed out! Had I not had my crutches with me that day, I'd not have managed to get off the bus even. When I got to the hospital hours later I had a "resting" pulse of 95 (I had very slowly walked from waiting room to exam room minutes before)

Working has become more and more of a struggle. As soon as I get home from work and have taken a shower, I go to bed and sit there until I fall asleep sometime late at night and then I don't sleep very well. I'm constantly in pain, constantly fatigued, it's not really a life for someone turning 26 in a few months!

Last weekend I went to Nottingham to visit some friends, it was a great weekend, but oh my have I been feeling unwell since I got home again! I've barely managed to get out of bed since I got home late on Tuesday evening. Since night to Thursday I've had a pretty bad headache and back pain which has been worse than my usual back pain.
I don't know what's causing my headache, but nothing helps to ease it, other than staying in bed moving as little as possible. A friend with diagnosed EDS think I may have slipped a disc in my back, or have developed dural ectasia. I didn't even know people with EDS or HMS could develop dural ectasia randomly like this, I only knew it's common among people with Marfan Syndrome.
Oh well, I don't know the cause for my headache, I just know it feels like having fireworks inside my brain when it is at its worst, and nothing helps. Painkillers does nothing, laying flat on my back does nothing and laying on my side just made me feel nauseous instead. If it doesn't ease up within a few days, I'll seek help in hospital for it!

I've barely managed to eat anything since Monday. Haven't had any appetite at all. Today I've had 6 small squares of chocolate, a few spoonfuls of mashed potato and a cup of soup, and I had to force myself to eat the potato mash and soup!

Ok, this post is not very cheerful at all, and it has taken far too much of my energy. I need to rest again...

A diagnose is getting closer and closer

I have seen my doctor again and have now finally found my private health insurance from work highly useful! My doctor wants me to see a rheumatologist as soon as possible or preferably last week. She takes my condition very seriously and know how serious it could possibly be. She suggested I seek help in a private hospital as I have the insurance. Said and done, I called the insurance company after I arrived work and they approved my need to see a rheumatologist ASAP and gave me the phone number to a private hospital very close to where I live. Called the hospital after my lunch break and I got an appointment on June 8th!

On June 7th I'm going back to see my doctor again for a gastroscopic exam because of my gastritis issues. My doctor wants to see if a cause for the gastritis can be found. I've been through that procedure once before. That time I got a sedative medicine that was supposed to make me forget everything, but I do in fact remember EVERYTHING from that time. I remember I was totally fine having that procedure so I'm not nervous about it now. If it can give answers and possibility for a better treatment, it's well worth it!

My doctor believe it quite likely I have Ehlers Danlos Syndrome so she wants to have me tested for it as soon as possible, and if I indeed get diagnosed with Ehlers Danlos Syndrome she will make sure all of me gets tested for all possible problems the condition can cause. Ehlers Danlos Syndrome may cause so much more than just floppy joints and pain, it can also cause more severe issues like Mitral Valve Prolapse in the heart, or generally weak blood vessels so it's very important to get a diagnose and know how the condition affects the individual and have regular checkups of the heart and monitor how the joints are doing.

There are many types of Ehlers Danlos Syndrome. The most common types are hypermobility type Ehlers Danlos, and Classic type Ehlers Danlos, both those may cause Mitral Valve Prolapse, or at least the hypermobility type may.
The other more common type is the Vascular type, it's much less common than Hypermobility and Classic type, but Vascular type Ehlers Danlos can be very severe and even deadly, it is considered one of the most severe types of Ehlers Danlos. There are other very very rare types of Ehlers Danlos too which can be more severe but those have had so few cases around the world so they are rarely mentioned.

In my case it is the Hypermobility type Ehlers Danlos which is suspected, possibly with a touch of Classic. As far as I have noticed, I have no issues which could indicate any Vascular Ehlers Danlos.

I could also have another connective tissue issue, but as it looks today, Ehlers Danlos Syndrome is the main concern.

Just thought I'd give you all an update.

Getting closer to a diagnose?

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

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!

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

Headaches...

Now seriously, headaches just have to be the worst kind of pain you can have. What can possibly be worse than a real bad headache which is just throbbing and pounding inside your head and no matter what you do, there's no relief to it.

If you have pain anywhere else in your body, you can still do things, but a headache really knows how to keep you in bed in a dark, silent room and it doesn't care about what you want to do or not.

I'm fortunate enough to not get headaches very often, but when I do get them it can be pretty bad, and even worse if it's a migraine.

I do however have pain somewhere in my body constantly, but none of that bothers me as much as a headache does when I get one. The only thing that can be nearly as bad as a headache is a real bad back pain that kinda locks your legs so you can barely move, that happens to me every now and then.

I've had a light headache this afternoon and evening, but it's nothing compared to how it can be, and nothing compared to how a headache can be for others.

Guess all I wanted to say is... Big hugs to all who suffers from bad headaches!

Kinda upset...

Watched a video on YouTube yesterday evening, and that made me quite upset! Such a scandal that an organization is spreading misinformation about a condition! Yes, they got some of it right, but they missed the crucial part of mentioning that the condition can affect people differently. Or at least they didn't mention that part clearly enough. In the video they made it sound like people living with this condition can live normal lives and have a normal lifespan. Ask someone living with it and that person wouldn't agree!

Yes, some people are only affected mildly, but for many, living with a medical condition means a lot of hospital visits, taking medications for rest of their life and sometimes complicated surgeries only to live.

I will not mention names nor which condition(s) it is due to privacy reasons. See this as something general... Don't believe in everything you see on the internet, even if it's posted by an awareness and patient support organization.

It's official!

I'm a spoonie!

Went to see my doctor this morning because of long term pain and hypermobile joints, and the doctor confirms that yes, I am hypermobile. I was however not happy with the appointment as I don't think he listened properly and took the easy way out sending me to physiotherapy that I know will do absolutely nothing for me- I ONLY have bad experiences from the past!

I didn't get a formal diagnose as far as I know, but considering I am hypermobile and have the pain, I guess you could say I have Hypermobility Syndrome for now, but until it's been checked for, EDS can't be ruled out.

I really hate going to doctor, and going today and not being taken seriously... I'm feeling let down and in a way pissed off. Ok, so I'm supposed to just accept this pain and put more strain on my joints with physiotherapy? Like helloooo I'm working full time, with my body! I CAN NOT BE STRONGER THAN I ALREADY AM! I'm strong enough to pretty much be moving mountains and I think that's one of the reasons my joints do stay in place and just cause pain.

Someone who is in the mood to shout at the system, be my guest! I simply don't have the energy to argue with a highly educated concrete wall :(

But yeah, I'm a spoonie! I'm 25 and will probably have joint and pain issues for the rest of my days, am already a few years in with some joints...

Appointment tomorrow

So tomorrow I'm finally seeing my doctor to try to get things straight with my misbehaving joints. To be really honest, I do feel a little nervous about it. What if my doctor know nothing about hypermobility and doesn't take it seriously?

I know I fulfill the requirements for an HMS diagnose easily, but what if it is EDS? Would that really make a difference? Looking at family history, my great grandmother on dads side had hypermobile knees, and so does one of my aunts, none of them had or have a diagnose, but it is still something I'll mention to my doctor tomorrow. For me, hypermobility affects my fingers, wrists, shoulders, back, ankles and a little bit in hips and toes and probably also elbows. The reason I think it "may" be more than just HMS is because there are some things with me that does fit in with EDS. I won't write it all down now, this post is long enough anyways :P

Today has been a kinda rough day. Woke up feeling like I had been hit by a train and it nearly made me stay home from work. Stubborn as I am I took a couple of painkillers I knew wouldn't work, and I headed to work and spent all day being in pain- constantly around 3-4 on the 10 scale with the occasional top, and it kinda got to me in the end of my shift. Started forgetting things and even did something I'd normally never do. Nothing severe though, but it could have been a dangerous situation quite easily. That's when I decided it was time for me to finish work for the day a little early. It's not easy to focus on anything when it feels like your joints are being turned inside out or being stabbed with a knife from inside.

OK, long post, rambling... My defense? I've only slept for like 5-6 hours in total in the past 48 hours ;) I don't feel sleepy though, and it was and is totally worth sleeping less :) Spending time online talking with a friend 6 hours behind my time zone, it's just amazing, and my new sleeping pattern actually has given me more energy. Just... The last 2 nights I've fallen asleep 2 hours later than my target time which is 2am. Now try 4am 2 nights in a row on workdays ;) I really do need to sleep earlier tonight.

Hope some of this makes sense :P

Will update tomorrow evening and let you all know what the doctor said. Right now I can't really think clearly, and as internet is really quiet- friend busy working, I think I'll just call it a night pretty soon :)

I'm full of bubble wrap

Or well, one could believe it sometimes anyways. My joints are making so much noise lately! Some joints has been sounding a lot for years, but now other joints has started too. The latest addition to the bubble wrap band is my shoulders, especially my left shoulder which made its loud debut while I was on the phone with a good friend of mine on Friday.

Now when thinking about it, it is a good thing I have my appointment with doctor on Thursday. I wasn't really planning to deal with all this hypermobility junk until after I have moved to another end of town, but thanks to friends nagging on me to make the appointment, I did and now that feels like a good decision. It is no fun feeling like hit by a train almost constantly, and sounding like you're full of bubble wrap! I'm just 25 years old for crying out loud! Hopefully Thursday can bring some answers or have me sent to see a specialist.

About the only positive thing I can say about my joints right now is that they stay in place! No dislocations or subluxations- yet!

So friends who have been nagging on me to make the appointment with doctor, Thank you! You know who you are ;)

Times of change

A lot has changed lately. I feel older than my actual age, that is nothing new really as I've always been "older" than my peers, but this time is different in a way. I can't put words to it, and won't try. I think only one friend really understands, one or two more may get an idea.

I have some really really great friends from around the globe, it's just unfortunate I'm half a world away from those I consider my closest friends. Distance and time zones really bite sometimes, but there's nothing to do about it other than go and visit each other sometime :)

Another change? Well, I'm proud to announce that I have sent in the divorce application this week! Hopefully the process will be fast so I can change my Facebook status to Divorced rather than just Separated. The less I see and hear from HIM, the better! The way he hurt me... I'm not even going to go into detail!
After this, I don't think I ever want to get married again, seriously! It's better to just have good friends around!

I've changed my mind regarding children too. I wanted to have children before, now I think NOT! I have enough problems with my body as it is, without abusing it with a future pregnancy too! In fact, I have so much problems with my body at the moment, with hypermobility and constant pain so every day at work is a struggle. I keep going though, I love my job!

On Thursday I'm going to see my doctor about all this hypermobility I have. It has reached a bad enough level I can't ignore it any longer now. I'm hoping my doctor will take it seriously and send me to see a specialist to be checked for EDS, just to be on the safe side, I do have some EDS signs too. I'm very sure I have at least HMS (hyper mobility syndrome) as my hypermobility causes pain and I get more than enough points on the Beighton scale. The requirement for an HMS diagnose is 4 points on the Beighton scale, I get those 4 points just on my hands! Then I can do various other tricks with hands and fingers which are not even on that test. Then I have many other hypermobile joints, both out of the ones in the Beighton scale test and joints not being tested.
"Normal" people think it hurts to bend fingers far back and other crazy things like that, the few workmates who have seen what I can do have gone quite pale when seeing it. But it doesn't hurt! I don't feel even a slight stretch until it's bent far far beyond normal. It's the fact that I can do those things that hurts, and I'm sure every single person with a hypermobility diagnose of any kind will agree with me. When you're hypermobile, your muscles have to work harder to compensate for the instability of the joints. It doesn't take much to feel tired and worn out when your joints have a bad day :(

What doesn't kill you makes you stronger!

Not many know this side of me as I don't show it often. Only very few would understand anyways and even fewer would be able to relate to it.
It was a very serious conversation last night with a very good friend or even twin soul that inspired me to write what I'm writing now. He can relate to it and we have this mutual understanding of each other rarely seen on this planet.

I have seen a lot in my life, writing all the details would take too long, most of you reading this would not understand and some of you may lay sleepless at night pondering how anyone can deal with this.

Anyways, all things I have seen or experienced has made me strong, stronger than you would expect from someone who is 25. It has also given me a very serious side. Now if my twin soul is serious enough to make a German blush (his own words), my serious side would make the whole German army from WW2 blush and laugh nervously.

How would I make the German army blush? By my determination, lack of fear and my ability to hold my head high and walk with long, confident steps through life!

Most people know me as a goofball who can make them laugh, and that's also the side of me I show the most. I am generally a very happy person who loves to share my happiness with others. I look positive upon most things and if life gives me lemons, I make lemonade.

Reality can be bitter sometimes, but add some sugar and life is sweet :)

I'd never had dared to say hi if I couldn't handle what it could bring...

In all its randomness

I just feel like blogging, so that's what I'm doing now.
It's been a Monday pretty much like any other Monday, overly busy at work as always, and the weekend has as always been too short. I swear, the people who invented the weekdays must have been bad at maths! Shouldn't the workweek and weekend be shared equally between the number of days in a week? Seriously, what sense does it make with a 5 day workweek but only 2 days weekend? Aren't people supposed to have a life outside work? Like hellooo I'm a full time worker, and now also a part time student who also enjoys a good chat with my many friends from all over the world. I need more weekend to have time with it all ;)
On top of everything else I'm working hard on one day make my dream reality with the awareness and charity choir. I have even decided on a few songs already even if it's all just in the dream-about stage yet. And the location for it all will most likely be London even if that's like an hour or more by plane from where I live. I just feel London is a central place, a place where you can really make a difference and it may be easier to find people who want to sing too :)

But before any of that can happen, I have my dream trip I'm planning for this year: Opera in Barcelona, Put flowers on at the foot of the statue in Montreux, visit London to see some important Queen and Freddie Mercury places and see the musical We will rock you!

Until summer, I'll work hard, and study hard and then hopefully go on my trip :)

I'm a student again!

I'm a university student again! It's the first time in 2 years I'm studying anything, and I feel really motivated! I went to my university this morning to attend an introduction day, the course is net based, but school is in Lund which is only like an hour away from Copenhagen, so anyways. I got to meet some of my classmates, and the two teachers out of which one teacher I've had before when I tried this course at Campus in 2006, the other teacher was new to me but he seems great! I had a blast today despite having to get up at the ungodly hour of 6.30 on a Saturday to be at school at 9am ;)
I came back home at about 4pm, and have been studying for about 2 hours since I came home, practicing writing characters by hand. It's a bit overkill at this point since we don't have to use characters yet, but I want to learn it and learn it well so it's better to start early. As for the course now, all of it is repeat for me as I've already passed this part of the course, but I feel I need to repeat it to manage the part I haven't passed yet, it's been 4.5 years so I've forgotten most of what I learned at campus.
I was really in the mood to do some translation exercises today, but there wasn't any new ones up on the course web page yet :( The one that was up is the very same one I did at school this morning.
Oh well...

Shoe rant!

OK, so we have to wear safety shoes at work, or well, we should at least wear them and most people do, most of the time. I do when I can handle wearing mine because those shoes are just a near death experience for my poor feet, ankles, knees and whole body really. Seriously, how difficult can it be to make COMFORTABLE safety shoes!?! After all, us who wear safety shoes at work are not office people sitting on our bums all day, we're physical workers who stand or walk all day, lift heavy items and/or deal with machines- which is the whole reason why we wear the safety shoes!

Many times, if I manage to wear my damn safety shoes for a whole day, I don't walk like the 25 year old I am when walking to the bus, I walk like a 80 year old lady! I'm in so much pain I can barely even walk! And the pain lingers for days, and even wearing proper shoes is painful for days!

I've been wearing my safety shoes for a day or two this week. Today I tried wearing them but had to give up after just a short while, the pain was just too much to handle! I had to risk my feet safety because the shoes made to protect them are too fucking uncomfortable! For crying out loud, I'm driving around a 800kg (~1764 pounds) forklift at work!

The worst part? NO INSURANCE is valid if I get hurt at work without wearing my safety shoes, be it a bad cut or be it having toes hurt by falling goods or a forklift.

I need better safety shoes, or the safety shoe makers need to wear their own shoes to try them before putting them into mass production!

Out of my own experience, Terra has good comfort, but the pair I have is a bit too narrow in the toe area so I get deep blisters from the steel cap so I can't wear them much. The other pair I have is a pair I got at work, they're from FTG and to put it simple- they make my feet suicidal and I have better comfort and foot support while standing bare feet on concrete floor!

I think my hypermobility may play a part in my shoe issues too, but I'm not the only one at work complaining about the discomfort of that shoe model from FTG!

I've even put gel insoles in my shoes to try to make them better, but it doesn't help!

Feeling like a bag of potatoes

I'm so incredibly tired lately, probably due to the flu I had and not sleeping well for a few nights now. Constant joint and muscle pain doesn't really help sleep either, it makes me sleep even worse! Right now I'm so tired in my whole body I can't even sit properly, I'm more or less hanging over the desk!

Planning the journey of my life!

It sounds dramatic, but it isn't really. I'm just planning to go on an extended weekend to Barcelona sometime this year, and I'll see an opera there and if I can get to see Montserrat Caballé perform, that would be the absolute best! I'm also going to London for a few days to see some places that were important to Queen and Freddie Mercury, and to see the musical We will rock you. I'm also hopefully going to attend the Freddie Mercury Memorial festival in Montreaux, Switzerland in September and put some flowers at the base of his memorial statue there. Freddie would turn 65 this year, had he still been amongst us, and it's also 20 years ago since his passing so doing this journey this year feels like the right thing to do!
If any of my friends reading this would like to go with me, or meet me at one of the locations do let me know. The more the merrier :)

Life is music, music is life

Sitting here, it's late at night and I'm listening to song after song with Freddie Mercury, and his duets with Montserrat Caballé. Each tone hits me like a massive wave of joy, filling me up with happiness and a desire to sing!

The afterflu

So, I've been quiet for a few days again. It has its good reasons though. I've been down with a flu! I had a cold all last week, actually since New Year's eve, and then on Thursday after standing outside for an hour waiting for my bus, I started feeling ill, started freezing. Did manage to work my shift, but as I suspected, I had a fever when I got home that evening and I was still freezing. On Friday morning there was only really one thing to do- call in sick! I had a fever on Friday which ended up reaching 39.5 degrees C in the evening. On Saturday I was even more sick, waking up with 39 degrees and barely being able to get out of bed all day. In the evening my temperature reached its peak, a whopping 39.9 degrees! That's when I decided to call the doctor. Called doctor, and as I was too weak (and alone) to go to the doctor, a doctor came home to me, confirmed that I had the flu and gave me a couple of Paracetamol and an Ibuprofen (I had run out of those at home) along with a prescription for Tamiflu (which I still haven't picked up).
Anyways, fever went away night to Sunday and since I woke up on Sunday I've been fever free and slowly but surely started to feel like a human again. Today I can even breathe some through my nose again! Today I've also started to work again, it was hard and tiring, but I managed it :)
Nose is still a bit swelled up on the inside along with some coughing, but I'm on the mend :)

I've actually only had flu maximum once or twice before this in my 25 years, and I've never taken the flu shot!

I guess I'm normally quite immune to the flu, but it hit me this time probably because of me already having a cold so my immune system was a bit weaker.
Really, other years I've been around people who has had the flu at that time, and I haven't got it!

In fact, I very rarely catch any of those seasonal bugs!

Hypermobility and I

Hypermobility or possibly Ehlers Danlos Syndrome may be the cause behind my constant pains and aches. I realized that shortly before Christmas and the more I read, the more everything fits in really. I don't have joints that dislocate all the time, but many joints can be overstretched. The reason I think it's not impossible I have EDS is because even after years and years of working with my hands, they're most of the time so soft you'd think I sit at home all day wearing cotton gloves, I can get scars easily from small injuries that normally wouldn't leave a scar, and as I'm a woman, I have these joyful few days every month and that is a pure nightmare especially on the worst day when I need to go every hour or so for a while to avoid leaks. It has always been like that.

I'm going to ask my GP to refer me to someone who can test me for EDS and HMS, I really just want answers!

Oh, and I'm writing this blog while having a fever and generally not feeling at all well, freezing because of the fever and everything so I don't really know what I'm writing.

Anyways, thought I'd post some pictures of my "partytricks" as I like to call it ;)