hypermobile spoonie

Sorry I've been so absent. A lot of things have happened since the last time I posted. For one, I got a puppy! She is a Tiboodle and has already become my companion. I hope later to train her to alert to migraines and POTS flares. Then the day after my appointment I went to Sydney. It was a pretty awful trip and I'm flaring really really badly now but I'm home with my puppy now so everything is ok. Ok now to my appointment... I was so nervous I couldn't eat anything before hand so I nearly passed out! But the specialist was really nice and listened to all my concerns. I'm a bit annoyed at myself because there are so many questions I simply forgot to write down and so didn't get asked. But the result was I got my diagnosis of Ehlers-Danlos Syndrome- Hypermobility Type/Hypermobility Syndrome. I was very confused because he kept talking about hyper mobility syndrome and from my experience if you call it that no one takes you seriously. However, he said that i...

I am so nervous!! Less than 3 days until my geneticist appointment and I'm starting to freak out. Today I went to the physio and had pilates and then our one on one session, which has left me exhausted. To be honest, I've done so much today but I'm feeling really proud of myself for pushing through after closing at work last night. I didn't make it through the whole pilates class which I was expecting after all the health issues I've been having recently, but I had it 30-35 minutes of the 45 minute class before I had to lie down which was ok. My physio is great in that she gets me and my limitations and can see when I'm about to pass out from exhaustion so she understands and encourages me to lie down and rest. I then had 15 minutes before my appointment with her so she gave me the draft letter she wrote for me to take to my appointment. IT'S AMAZING! We changed a couple (a lot) of things and so she's going to fax it to them, which is stressing me ...

Why? Why did I say I could go on a holiday the day after my appointment? I dream about this appointment now. I'm that nervous. I still don't know how to tell mum I don't want her in there with me. I think it'll break her heart. Again just random, probably drugs (that do not work) induced. BB :)

As I sit here in the early hours of the morning, after tossing and turn, scratching my legs raw and then finally passing out, I cannot stop thinking. I get asked a lot how I can keep going after getting knocked down so many times. No just by people that know the full extent of my medical issues, but also by those who don't. Some people just see me being ill and breaking bones and coming to work in pain and with bruises everywhere. These people clearly don't live with me or see what I go through on a daily basis but what they do see still elicits the same response. 'Wow your so strong', 'You're sick a lot', 'Are you okay?', 'Why are you away so much', 'I can't believe stuff like that keeps happening to you', 'You have such bad luck' etc. I could keep going but you get the idea. These comments always make me feel sick. Because, if I had a choice, I wouldn't be doing this. I wouldn't keep fighting an unwinnabl...

So my birthday was 2 days ago and it actually turned out to be a great day! I woke up feeling great (compared to my christmas wake up call). I then jumped into bed with my parents, a tradition we continue to this day (at 19 years old! haha :P) and we waited until I was officially born. Then we went down and opened presents before having breakfast. I got some very heartfelt and beautiful gifts, like pandora charms from my extended family and ugg boots and ballet tickets from my parents. I've been wanting ugg boots for so long so it was a wonderful surprise. The body pillow was amazing as well! I told mum that if (when) we ever have to go the the ED again, I'm wearing my ugg boots, because, why not? Then my parents and I went out to lunch and my dad left to go to 'a meeting'. Mum and I did some shopping and then I went off to the new children's hospital to do my training with Starlight which was amazing!! I can't wait to start!!! When I got home (8:30pm) I got...

As I've mentioned before on here, I have never been formally diagnosed with Ehlers-Dalos Syndrome. Where I live, you must be diagnosed my a geneticist, whom it can take anywhere from 6 months to 2 years to get an appointment with. My appointment is one week today. The 15th of January. I'm not sure if I ever gave a proper back story on here about my medical history and I can't be bothered to read back through all my posts so I thought I'd share a short version now: I was born with hip dysplasia I've suffered from pain throughout my whole body for as long as I can remember I've always been able to impress my friends with my 'party trick' joints I had 2 breaks in a year, which took 6 months to heal. One of which is still healing I suffer from other non-musucloskeletal issues such as GI issues, vestibular issues and heart issues  This is a VERY short version but it gives you a bit of an idea.  To be honest, as I have said before, I'm...

I know I keep saying that I promise I'll post and whatever, but to be honest I'm not even sure if anyone actually reads this. Life has been pretty hectic recently and before starting this post I didn't even bother to look and see when I last posted because I know it was forever ago. One of my new years resolutions is to become more active in the chronic illness world so I thought I'd start now because I had a sudden burst of energy. Tomorrow is my birthday. I have mixed emotions about tomorrow as christmas didn't go to well, with me ending up in hospital. That, combines with the fact that I'm just coming to terms with how many friends I have lost since getting noticeably sick and the fact that one of my best friends is leaving for America in a couple of days, is causing me to be on an emotional roller coaster. Which is natural and should be embraced, but is terrifying none the less. Tomorrow night (my birthday night) instead of dinner which my family, I'll...