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...