hypermobile spoonie

After very little sleep last night I've spent my day studying, cleaning and watching TV. Very chill and surprisingly productive. The surprise thing I've done today is watch old vlogs of mine. In 2012, at the height of my migraine drama I was receiving very little medical care, was on no medication to treat my debilitating pain, was stuck in medical limbo and spent most of my day crying. As I previously mentioned, I was stuck in a hole I felt I couldn't get out of. It was around this same time that I started vlogging. Recording candid videos on my laptop every day documenting mainly the lows and sometimes the highs of my life. My roller coaster. The videos have always been something I've done for myself, much like blogging. An emotional release. Many of my memories from around that time are clouded by the pain and darkness I was experiencing, but I've always known that that was one of the toughest times in my life emotionally. Until today I didn't know how toug...

Darkness. For a long time that's what I lived with day in and day out. At 16 it's hard to hear that the rest of your life will be filled with pain and suffering, that no one can fix you. I had friends, friends that didn't understand what I was going through, so I retreated and so did they. I can honestly say that I've never considered myself to live with depression, but this time was probably the closest I've ever come to it. I felt like I was stuck in a dark hole that I couldn't get out of. Even worse, I felt like no one even knew I was there. I was the happy girl, the smiley one, the 'I'm okay' one, the one you would never have guessed lives with chronic pain. And I still am. I still am all those things and yet more. I think when you first get given a life changing diagnosis you go through many stages until you get to acceptance, one of them often being feeling isolated and alone. And that's what I felt. I didn't know anyone in my situa...

Well I'm back! I know, I know. I'm about a year and a half overdue for an update. SO I thought I'd try my hardest to bring you up to date with what's been going on recently. Last time I wrote, I'd just been given my official diagnosis of Ehlers-Danlos Syndrome- Hypermobility Type, although from the sounds of the recent EDS symposium and learning conference, it sounds like it won't be called that much longer! It's been a rollercoaster ride since then! I've completed over half of my degree, including my first block placement (yay!). I went on a trip to France to surprise my host sister and my mum! I've restarted seeing my pain specialist, I now have a cardiologist and am waiting to see a gastroenterologist (more on that later). I've had 3 different jobs and now have a great and flexible job, I wear ankle braces full time, see a podiatrist for orthotics and have had more life experiences than I can count! I've been living. It's been bu...

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...