hypermobile spoonie

Again it's been a month since I posted... Opps! It's been an intense month! My endoscopy went well. They were worried about an anaphylactic reaction to the Propofol but luckily that didn't happen. Sadly though they didn't find anything so still no answers but I've got my gastro appointment in about 3 weeks so hopefully we'll have a plan to move forward then. I also managed to have a POTS flare after the procedure due to the 'eating and drinking nothing for 18 hours' thing. But after fluids and the threat of an admission I went home to snuggle up with Ami. Next in September was an anaphylactic reaction to peanuts, uni problems and a possible CRPS diagnosis, amongst others. Let's just focus on the possible CRPS diagnosis. As you may or may not know, I fractured my right ankle in 2014, followed by 13 weeks in a boot and crutches + 4 months of rehab, plus rehab that continues to this day. My ankle has since never be the same, but usually it...

Today marks the second day of Spring and September and the end of a tough tough week. This week has included nightmares about my upcoming Endoscopy (3 sleeps), an epic POTS flare that left me lying on the ground in my tutorial, meetings about upcoming placements, epic angry ankle EDS flares and just really really really bad fatigue. Ohh plus meeting and starting with 2 new families for work and deciding whether I want to take the next step and get AFOs. It's been an interesting week. But! Spring signals the beginning of chronic pain awareness month. So this month I'm going to be sharing snippets of my life with chronic pain over the next month. This coming week presents another week of tough decisions and medical things. Firstly... Monday signals my Endoscopy and first time under general anasethic and fasting since my POTS and EDS diagnosis, so I'm not expecting it to go well... To say I'm nervous would be an understatement. As I've already said, last night w...

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...