Nearing 30

Only one week to go now until I hit 30! A number I was terrified of for a long time as I didn't know what would happen with my life and had a lot of uncertainty with how my economy would look like. In late August I finally managed to relax a little, I got THE letter, the letter that told me I had been awarded full, permanent disability as of October 2015 when I turn 30.
It's not something I wanted of course, but considering how my body is behaving, it's a necessary evil and I'm very happy that the system exists for when it's needed. I felt a kind of sad relief upon reading that letter, mostly relief as it meant I'll have a reliable income until I reach 65, but sadness because I only got a handful of years of working in my life, and left the job market before I even turned 26 because of the effects of my Ehlers-Danlos Syndrome that at that time was yet to be diagnosed.

A big part of my life is spent horizontal due to the intense pain and fatigue I'm experiencing every day. If I am to attend some activity I often need to rest up both before and after, and recovering from one single activity can take several days. Post exertion malaise at its finest or something... I have not been checked for ME/CFS but I have a lot of the symptoms associated with it, so I wouldn't be at all surprised if I have both Ehlers-Danlos Syndrome and ME/CFS, but getting another chronic, debilitating diagnose wouldn't really change a thing in my day to day life, and I was awarded my disability based on how my EDS is affecting me and how my day to day life looks like, so yeah, an additional diagnose that can't really be treated efficiently, won't make a difference in my life.


While I do feel some sadness about my inability to work, I am entering my 30's as a very happy individual who despite life's hardships holds her head high (sometimes with the help of an Aspen Vista neck brace), feel that she has accomplished things in life and make a difference for people. I am where I want to be in life and am not bitter about not being able to work even though I miss working, I'm not bitter about being disabled, instead I embrace the positive aspects of the life I live and make the most of it.
I have no fear of items that can help me live a more full life, like braces, medication and mobility aid. I have embraced my wheelchair and made it into a friend that enables me rather than disables me. My condition and disability has opened a whole new world to me, given me new interests and new friends from all over the world, and in all honesty: I wouldn't want to change a thing! (other than getting my work ability back)
Wheelchair technique and skills have become a bit of a passion to me, I'm constantly working on improving my balance and skills, and only just the other day I took a new step by trying going down a few steps in my wheelchair! I went down backwards as that's easier than bumping down on the back wheels in a wheelie, and I did great! Next step is to do it with more steps, and then learn to bump down in a wheelie as well, it's one of my big goals with my wheelchair skills!

In my nearing 30 years of life this far I have (without any order) traveled around in most of Scandinavia, visited North Cape three times before I even hit my teens, swimming in a lake on the North Cape island (that's like 71 degrees north!), I've been swimming in a fjord only a few hours drive south of North Cape, I've seen the midnight sun countless of times, seen a whale in a fjord, seen seals in the fjords, petted reindeer, seen a snowy owl in the wild (I LOVE owls), gone out on a bird safari by boat, fishing in a fjord in the midnight sun, been out in a forest at dusk and heard owls all around, seen the Aurora Borealis many times, seen the Aurora Borealis together with a comet, seen a complete lunar eclipse, been in an article in a pop magazine, met celebrities, won a trip overseas, been backstage at a tv show in Los Angeles, been to a concert with my absolute favorite band ever: Queen, seen Queen's private jet at the airport, been late to work because of President Obama visiting the city I lived in, seen the Swedish and Danish royal families in a mall, been married, gotten divorced, traveled to China three times, sat on The Great Wall enjoying the view and looking at the tourists on the other side of the road, seen the Olympic stadiums in Beijing, traveled by night train in China, traveled by Maglev train in Shanghai, had better chopstick skills than Chinese nationals, had my drivers license for 11 years, visited every region except for one in Sweden, visited (transfer or more): Norway, Finland, Denmark, United Kingdom, Portugal, Germany, Netherlands, China, USA, Poland and Greece, seen the sunrise over Mongolia, lived abroad (in Denmark), become an accessibility activist, occupied a tram together with 9 others in wheelchairs, gotten less shy, piloted a Jas39 Gripen figther jet (only a simulator, but still!) and much more!

My life has been anything but boring! I've seen and done so much both before and after my Ehlers-Danlos Syndrome became obvious. I live a pretty awesome life despite the limits that Ehlers-Danlos Syndrome causes. I focus on the positive rather than being bitter about the things I can no longer do.

I know I may be facing major surgery down the road because of my condition, I've already had one major surgery that Ehlers-Danlos Syndrome was likely the cause of- Two years ago, I had a complete hysterectomy and since then only have my ovaries left. If it wasn't for Ehlers-Danlos Syndrome, it's not likely I would have needed the surgery. Do I miss my ability of having biological children? Nope, not at all! I've never really been fond of children and because of my condition, a pregnancy would have been high risk and with a high risk of disabling me for life because of how I reacted negatively just to hormone contraceptives that were used to try to manage my periods before I had my surgery. I got much worse very fast with mini pills and hormone IUD, and even with it being over two years since I had anything more than just my ovaries, I'm battling pelvic issues that are normally associated with someone who's given birth to several children vaginally. I've never even been pregnant!

The rapid decline because of the hormones is one of the many reasons why I'm barely able to walk any longer and use my wheelchair close to 100% of the time when I'm not at home. It's simply not safe for me to walk, nor is it very effective along with causing a lot of pain and fatigue afterwards. It's simply not worth it to walk more than I absolutely have to, which means I walk at home within my apartment as it's not very accessible. I am not bitter about being in a wheelchair. As I mentioned earlier, it is my friend which enables me rather than disables me. It opened a new world with new possibilities and interests and friendships. I wouldn't change a thing!

In a couple of weeks I'll be in Stockholm at a camp for teens and young adults with physical disabilities, I went last year as well and had a blast! I'm really looking forward to the camp this year as well and can't wait! The place the camp is held at is very cozy, yet with a very inspirational atmosphere too it as it's a place where the Swedish elite athletes goes to exercise before major events. There's something special about trying various adaptive sports in the same arenas as the elite spends a lot of time in and walk (roll) in the same corridors, it's a lot of fun too, to meet others with disabilities and play sports together and just hang out, learn things and have fun!
Last year at the camp, I had a doe outside of the hotel room window one morning, and from the conference building you see parts of the archipelago. It's truly an amazing place!

Now I need to try to sleep, I've got a busy week ahead with a couple of meetings, some regular stuff I need to do (like laundry) and I also need to bake a cake as I've promised to bring cake to the next board meeting which is on Friday, because of my birthday next week. My friends in the board of the Gothenburg branch of the organization for young people with disabilities, mean a lot to me, as does the organization as a whole! Other than bringing cake to that meeting on Friday, I'm not really going to celebrate my 30th much. Will probably just have a quiet day with my parents on Monday, maybe we'll go out somewhere to have dinner, but I haven't planned for any party or organized celebration as that's just not my thing. I don't like to be the center of attention, and it feels awkward when people sing and I don't really care about gifts either. So it will just be a quiet day with some cake I think.

Ehlers-Danlos Syndrome Awareness Month

Today is May First! Or well, it's already past midnight here as I'm typing this, but matters less!

May First marks the start of Ehlers-Danlos Syndrome Awareness month, a month where us living with Ehlers-Danlos Syndrome do as much as we can to spread awareness and knowledge about our relatively rare genetic condition! Now we do like to spread awareness all year, but May is extra special to us.

Now I do blog a fair bit about Ehlers-Danlos and how it affects me normally as well, but now in May I shall try to do it even more, and I may even try to put together some YouTube video about it. I used to have some videos up on my YouTube channel but recently made them private due to them not having the best quality and they were recorded directly on YouTube so no editing or anything was done. Think I shall attempt to make an EDS awareness video combining both photo and video and edit it in Movie Maker before uploading so it looks more neat and has a better flow to it, I may try some vlogs again as well, but I'm pretty camera shy and with my brain being the way it is...

So you can imagine trying to record a vlog and staying on subject throughout the whole video... I also feel really awkward talking "to myself" on camera. But I'll try! It's for the greater good and if it can educate people about Ehlers-Danlos Syndrome, maybe help someone currently who's running rampant without a diagnose, it's all worth the awkwardness! 

Seeing how I have been feeling a bit better lately despite my pretty severe pollen allergy and a pollen season from hell, I don't look too bad at the moment so yeah, videos may be coming soon!

I'm also beginning to suspect that I may have some kind of cortisone deficiency in my body. I'm going to discuss that with my doctor ASAP as I started to feel better the same moment I added the Betamethasone tablets for my allergy a couple of weeks ago. This pollen season has really been...

So I haven't been allergy symptom free even with the Betamethasone, but even WITH allergy symptoms still (though they've been kept at manageable levels with all my medicines) I have been feeling a whole lot better in general than I do on your average random Thursday anytime of the year when I'm not taking any Betamethasone. 

I've also gotten a bit more normal appetite compared to my usual barely wanting to touch food kind of appetite, and the pair of jeans that I bought on Good Friday are already like a size too big and I normally stay the same when it comes to size, possibly due to my body often being in starvation mode when my appetite is very low, and hence storing all the nutrition that it does get. 

It's just a theory, but I am definitely willing to try it out for an extended period of time, especially since we're talking really low doses of Betamethasone. My sweet spot seem to be as little as 1mg twice daily or 1.5mg twice daily, so yeah, 2-3mg per day! It's such a low dose that it doesn't really even pose any risks when it comes to your body's own production of cortisone. 

I know taking any kind of steroids is bad for connective tissue though, but again, it's such a low dose so it shouldn't be a problem, and if it does work out and giving me more energy and a more normal appetite, the benefits definitely outweighs any possible risks! I really could do with weight loss for my long term health (at this time, I have no health issues at all that can be blamed on my weight) and having a bit more energy to do things is never a bad thing! It's not a cure, but yeah, just being able to get on with my day a little better, being a little bit more spontaneous with activities and being able to drive a bit more again, to me those little things are just utterly amazing! 

I have been doing more in the past couple of weeks alone, than I'd normally manage in a month or two, plus that I've been driving more in just one week, than I've done in a 3 month period lately. If 2-3mg of Betamethasone per day is giving me all these benefits, then being on that medicine is the right thing for me and I will fight for it if I have to!

On a completely different note before I finish this blog post.

My blog has reached over 10,000 hits! Thank you so much everyone who's reading this and reading my posts! When I first started this blog some years ago, I could have never imagined it would ever reach 10,000 hits! But the number definitely keeps me motivated to continue writing as often as I have something to write. 

This shall be celebrated with a short clip of the fireworks that were displayed at the spring celebrations I attended yesterday (April 30th).