Dear EDS

I've had enough of your shenanigans now!
Why are you giving me this horrible headache and neck pain?
Why are you making me almost send myself flying across the room due to stumbling over my own feet, loss of balance or dizziness?
Why are you forcing me to lay down pretty much all day?

I have tons of things I'd like to do or need to do, but being stuck on my back makes it very slow to accomplish anything.
If I have time and inspiration enough, I'm intending to make an EDS awareness video for Rare disease day tomorrow (eh, today for me as it's already Friday!). I say if having time to, as I have many other things I need to do, and as with everything else, this headache and neck pain is behind this delay as well. I haven't really felt like making any video while having the feeling of my brain trying to escape down into my neck!

So thank you, suspected Chiari malformation for adding more crap than just the EDS does! I really didn't have enough to deal with anyways so yeah. Notice the sarcasm here?

On a totally different note: I really fucking HATE the FIFA 14 game! Not because I play it, but because some utter fucking assholes play it and think it's better to hack than getting a job or saving up to buy some filthy fucking game credits! FUCK YOU! I hope you fall onto a football and have the ball shoved up your ass so badly that you look like Violet from Charlie and the chocolate factory! And may you be forced to listen to Justin Bieber and One Direction for all eternity!

Thoughts on today's "doping scandal" in the Olympics.

So one of our key players in the ice hockey team got caught with too high levels of an otherwise allowed substance. Sweden is pretty outraged about this at the moment, not the fact that he tested positive, but how IOC and others handled the whole situation. The test was done on Wednesday and would normally be analyzed pretty quick and should there be a positive the athlete would know within 48 hours, normally. With our hockey player, they waited until today, until he was about to hit the ice for warm up with the team, to play the final against Canada. Now anyone knowing basic maths knows Wednesday to Sunday is a whole lot more than 48hours! He should have been told about this on Friday, or yesterday so the second test could have been done and analyzed before the game today. But no, it was released in the 11th hour, the coaches had to scramble together a new game plan in literally just minutes and what should have been an amazing day of the Olympics, turned into a day of sadness and frustration for many.

Now to the actual substance. This player has confirmed issues with allergy, and has taken the same allergy medicine for many years, his medicine is prescribed by his NHL doctor, his team doctor for the Olympics approved him to take the medicine, yet possibly in a lower dose than he would normally take, he's drug tested 4 times per year in the NHL and was tested by IOC back in January for the Olympics. All clear!
Now all of a sudden he happens to be marginally over the allowed limit of a substance that's in his allergy medicine, and not just do they not allow him to play the game of his career, but tell him just before the game!
This could have been dealt with in a much better way! Especially since it's not even an illegal substance for athletes to be on, many athletes take the same or similar medicine to treat their allergy! In Vancouver another athlete from another country was caught being slightly over the limit of the same substance, yet all he got was a warning, he wasn't stopped from playing with his team.

There are many reasons why a substance may be more concentrated in the body sometimes. It can vary with your hydration, activity, diet, sleep, when you last took your medicine in relation to the drug test, how your body is metabolizing the medicine at the given time and so on.
Should an athlete really have to worry about testing positive and being excluded for something they are totally honest about taking, that is prescribed by a sports doctor and approved by the team doctor and is taken for a very real medical issue?
That seems to be the case today, sadly!

I thought sports was meant to include people, but instead the IOC seem to be leaning towards discriminating very talented athletes who are doing very well in their sport despite living with a medical condition that without treatment LOWERS their ability to perform! Taking their medicine just gives the allergic or asthmatic athlete the same starting condition as the athlete who's not battling allergy or asthma, who of them wins depends on who hit the shape at the time of the competition, and who has the best skill in that particular sport.
Now if an athlete who is NOT having a medical condition and NOT declaring the use of a certain medication is found to have a substance in their system, that is doping!

If an athlete with a condition is taking prescribed medicine, declaring it in documentation and has it approved by doctors, there shouldn't be a problem. As I mentioned above, the reason the concentration of a substance may be higher can have many factors, even if the dose is the same or even lower.

An athlete with a medical condition shouldn't have to be excluded from the Olympics or choose not to participate just because of the risk that their prescription medicine might get above the limit, that's just a waste of incredible talent and many years of training! Unless you invent a way to keep track of allergy medicines the same way as a diabetic can keep track of blood glucose levels, it's just not possible to know what your current concentration of medicine is, and with the different life during Olympics compared to home, your body may change too.

What I wish for is that athletes with a confirmed medical condition and approved medication that they declare, should not get in trouble for just slightly elevated levels of a substance that's actually allowed!

Either that or the athletes who aren't battling allergy or asthma should have to breathe through a straw during competition so they're brought down to the level of an unmedicated athlete who has allergy or asthma!

Pure performance enhancing drugs, taken only for the sake of doping oneself to perform better, doesn't belong in sports at all! And of course, levels of a substance way over the allowed limit needs to be looked at so someone isn't overdosing with the intent of doping and hiding behind their diagnose!

But someone with a medical condition who's being treated medically by approved medicines and methods should have the same right to compete as those who are at full health!

With all this said. I do not think the outcome of today's hockey would have been different, maybe Sweden would have scored too if not being all shaken up by this and having to re-plan everything just minutes before the game, but I still believe Canada would have won and I'm very happy for Canada and very proud over our Swedish team for WINNING the silver, they didn't lose the gold, they WON the silver! It's the whole thing with waiting for so long before announcing the finds from Wednesday and excluding a team member just before the final, over a substance that is even allowed (and in this case only slightly over the limit) that I'm angry about, especially with someone else only getting a warning in Vancouver, and I would have had the same feeling about this no matter what nation the person competed for, it just happened to be someone from my own country who was affected today!

What Ehlers Danlos Syndrome feels like

I started typing a draft in this subject this morning before I finally managed to fall asleep, but it's such a heavy subject and difficult to write about and explain so I decided I'd leave it to a more awake moment, plus my hands were killing me this morning.

So what does Ehlers Danlos Syndrome feel like? Well, seeing how the syndrome affects individuals very different and people experience things very different, I can only try to describe what it feels like for me. Maybe someone will recognize themselves in it and maybe it can give someone without a connective tissue disorder an idea about what it is like, living with this condition.

The hallmark of my type of Ehlers Danlos Syndrome is hypermobility of the joints, the severity varies between individuals and joints. I have some joints that are only mildly affected and other joints that are more affected. Having to constantly compensate for the hypermobility to keep everything in place is very tiring, and with time very painful, muscles are working overtime and never really getting to rest, not even when you're laying down, even though laying down often helps some. Keeping your body upright feels a bit like Pinnochio when he first loses his threads- wobbly, balance issues and poor proprioception and often poor posture. Every move is carefully planned to avoid injury and extra pain.
Even just a small thing as yawning can cause you an injury. Last night I yawned and happened to look down slightly at the same time, which resulted in my neck popping loudly, causing pain, dizziness and slight nausea instantly, and discomfort and a spinal headache today. I've spent all day in bed today, over a yawn yesterday!

Muscles easily tire from constantly compensating the hypermobility, doing any regular task can be both tiring and painful. Muscles often feel like a violin string about to snap due to how hard they work all the time.

The physical pain I live with around the clock feels like getting stabbed with invisible knives in random places, all while having a toothache like pain deep inside the muscles and joints, and the feeling of someone trying to separate you using a crowbar. The crowbar feeling is mostly in my SI joints, while the stabbing and toothache like pain can be anywhere.
Today my hands are hurting pretty bad, maybe from my new iPhone being too slippery to hold as I haven't bought a case for it yet. So I've actually taken many breaks in typing.

My neck and head feels like that of one of those bobble head toys. It feels unstable and I get spinal headaches that are intensity wise sometimes even worse than a migraine, though without the light and sound sensitivity that I always get with actual migraines- that's one of many ways for me to tell them apart.

I feel joints and ligaments moving abnormally as I move, sometimes I have to stop in mid action because I get a sudden onset of pain in a joint and have to put it right again, sometimes just a flick is enough, other times I might have to manipulate the joint a bit.
Fingers tends to lock and swan neck while doing very simple things such as typing. The little pressure needed to press a key can be enough to sublux something. Even using a touch screen can at time have fingers lock on me pretty often.

The issues with POTS and autonomous nervous system is even more hard to describe. I'm not even sure I can put words on it to be honest. The only I can put words on really is the broken body thermostat as I can go from freezing to sweating to freezing in the blink of an eye, all while the temperature around is the same.

Fatigue and insomnia is another big thing. Imagine never feeling rested and wanting to sleep, but not being able to sleep properly and spend most nights awake due to pain and an overactive brain. Sometimes only sleeping maybe 7 hours in a 3 day period, sometimes sleeping 10 hours per night or more and feeling worse when waking up than you did when falling asleep. The best way to explain the feeling is to imagine being a rechargeable battery that's constantly low on battery yet unable to charge full.



This post is merely touching the surface, but it's really too difficult to write about, and trying to is exhausting. Exhausting to the level where I'm actually going to sleep. Battling the spinal headache certainly doesn't help now.
Pain flares like the one I'm currently experiencing can either make me sleep all the time, or keep me awake. The sleep version isn't really sleep as in sleeping, it feels more like falling unconscious so my body can get a break from pain signals. It's not a restful sleep at all.

Alright. I'm fading and still need to get up to turn off lights.

A Golden day!

Yesterday our women's relay team won the Olympic gold medal, it was the first time in 54 years that Sweden won a gold medal in women's relay 4x5km! Today it was the men's turn to ski 4x10km relay, and our guys did it! Defending the gold title from Vancouver 2010!
It's the first time in a long time that the same country has won both women's and men's relay during the same Olympics! Needless to say, us Swedes are jumping around with joy today, feeling proud over our country and amazing athletes! Cross country skiing is normally ruled by Norway, it's like Norwegians are born with ski on their feet and they often beat the Swedes.

The odds for Sweden to not just get double gold like this, but also Norway standing without medals in both relays? About the same as it would be for a purely Canadian team to win the Super Bowl!
I think I just saw a pig fly by outside when I went home from my parents earlier, things like this just don't happen. It's hard to believe this double gold has happened, but it is for real, I've seen it on TV all evening and my parents and I celebrated with some alcohol free cider, fruits and chocolate.
Now I'm putting my hope into both women's and men's hockey teams. Our men are current world champions, and unless they're in a bad period, they do have a gold chance or at least medal chance. Our women's hockey team is in the Semi finals so they also have a good chance! Our Curling teams are doing good too, especially men's team.

Seeing how few athletes we send to the Olympics compared to many other countries, our athletes are pretty damn good! Sweden's current medal count is 2 gold, 5 silver and 2 bronze, making us number 11 on the medal rank this far in the Olympics!

Today is a good day!

A good day!

Quite a bit has happened since my last post. I've upgraded to a new phone which is awesome, I love it and it has much more storage than my old one and is so much faster!
Finally have space for all my music without having to worry about running out of space anytime soon!
Have just finished adding the music I want in my phone for now, and am having a nice chat over twitter with a really good friend while listening to music.

Feels like I've found my way back to music for the first time in a long time now. I haven't been into listening to music much lately, but now I'm both listening and really feeling inspired to take up my violin playing again for the first time in many years!
Hoping my hands, wrists and neck can handle the violin still. I know I probably won't ever be able to join an orchestra of any kind again as playing for hours at a time would be too much. But just playing some at home again would be great! I have some songs I'd really like to learn on the violin.

In the afternoon today mum and I went to an artificial beach indoors for some light therapy. Lamps that gives you all the good things from the sun, but not the harmful UV. An hour in that light gives you an entire days worth of Vitamin D through sunlight, plus the fact it really feels like you're laying on a sun bed on a beach in the Caribbean. It's really nice to go to that place and just relax for a while and at the same time get some much needed Vitamin D as us here in the north are always deficient in wintertime.

Tomorrow I'm going to a Party Lite "candle party" in the late afternoon. I've been to one of those before and it was really nice to sit and talk with the others and just smell all the candles. The candles are really expensive but to be honest, it's worth it because it's so high quality and the scent is just amazing! I have a couple of different Party Lite tea lights and when lighting one of those, the whole room will get a mild scent from that one little tea light. The room sprays are really nice too!

Next weekend a trip to Gothenburg is planned, for yet another "coffee date" with fellow EDSers from the area. Those meetups are always nice so I'm really looking forward to next weekend!
My neck is causing hell, but I'm not going to let that stop me from going!