hypermobile spoonie

My family at Fraser Island <3 Everything has been so hectic these past 2 weeks! On monday I started back at uni and it was pretty tough. I only had to go in for 2 hours worth of lectures, however I was exhausted after it all. Tuesday and Wednesday were both full days and my arms are so sore now! On the plus side, I just about passed out from exhaustion and my serious migraine last night so I slept pretty well. Ahh the perks of chronic pain induced exhaustion! My uni friend is being super nice and driving me to and from uni whenever we have classes together which is making it a lot easier for my parents and I. New Lifeproof case :) love it! Sitting in my wheelchair So soft new pj pants! Everyone at uni is being really good about the whole thing and yeah sure I'm still embarrassed to wear the boot and use my crutches but I'm getting used to it. People open doors and talk to me and try and relate to what I'm going through. Of course they have no idea...

So it's officially been a week since I got my boot, a week (and a day) since I fractured my ankle and a week into my recovery. If I was normal (i.e. actually healed in the normal amount of time), I would have 3-5 weeks of recovery left. However, as my fractured elbow (I know I'm a mess) took around 6 months to heal, I don't have high hopes for my ankle. Therefore I am one week into an unknown time period. Which is ok, as long as I can still do my uni placement at the end of the semester. Right now though, I am doing everything by the book. I am not weight bearing on my foot, I am resting as much as possible and only really taking my boot off when I have a shower, or get changed. I am sorry I haven't been posting often or about anything of any real interest, it's just that I have nothing to say. I am bored out of my mind at the moment as I have nothing to do! All I do it watch tv shows all day and rest my leg. Uni goes back next week and I think it's going to b...

I'm tired. So so so tired. And sore. Today I woke up in pain, the type that just can't be shaken, even with copious amounts of the amazing painkillers they gave me at the hospital. That didn't leave all day and so I decided to stay upstairs in my rooms and not even attempt the stairs. As I said yesterday I'm going a little crazy. I painted my nails, then repainted them another 2 times. Like I said. Crazy. I've basically just been reading and watching Grey's Anatomy all day. I really need some hobbies/crafts suggestions for the next week or so. After that I'll be back at uni which is going to be seriously tiring and painful, not to mention embarrassing but oh well! I think I'll be super busy and tired. I did eventually go outside for about an hour this afternoon and chat to my neighbour, only because my mum practically carried me down the stairs and shoved me out the door. Not much you can do when you're broken. Tomorrow my dad's going to have a...

Day 3 and life is getting better. I think the worst pain in behind me (I hope) but I'm going a little stir crazy. I have absolutely nothing to do! I live in a 2 story house and so when I wake up in the morning I have to wait until someone else wakes up to help me get downstairs where I stay all day until it's time for a shower (which I can't do on my own) and bed. There is only so much TV one can watch ahaha. Hopefully some friends will be coming around over the next couple of days to keep me company, but I think I need a hobby. I actually managed to sleep through the entire night last night but woke up quite sore. I don't think these 6 weeks are going to go very fast :( I've been looking online to find a bag that can fit my laptop in it for uni because I won't be able to carry a bag when I first go back next week with my crutches. I can't really seem to find anything and I'm not looking forward to going to uni with the boot. On Thursday I went off t...

Yesterday I was at a trampoline place with some friends from work and even though I used to train in trampolining for years, I landed funny on my ankle and it cracked. An hour later and I was getting put into my first ambulance and taken off to hospital. By 6pm I was being discharged with a referral to an orthopaedic surgeon and a boot sitting place as my ankle is fractured. I've never felt pain like this before. Even after all the chronic pain and everything I've been going through the past couple of years, when I woke up early this morning after sleeping on and off all night the pain was just too intense. Like screaming for my parents and sobbing intense. I can't find any position that is even remotely comfortable or slightly less painful. This is going to be a long recovery. And due to the fracture, I can't continue with my hip rehab, so that will have to be put on hold for 6-8 weeks, possibly longer due to my Ehlers Danlos syndrome and my faulty collagen. Now I...

So I found this link talking about chronic pain, especially in the Australian population. It is so true! I myself have found that APMA is a very useful organisation and finally it's being recognised! http://www.abc.net.au/news/2014-06-20/queenslanders-on-frontline-of-fight-against/5540410 Have a watch! It's amazing :) Good reason to smile today. Lets get some awareness going! BB :)

So my dizziness aka POTS has subsided enough for me to be able to write my essay and this :) yay! Good news is my essay is due today and I've finished and submitted it. I have no idea how I actually went to school and did exams and assignments for 6 months whilst being dizzy! It's terrible! I'd forgotten how great it feels to have a small part of your body working normally. As they say, you don't know what you have until its gone. SO true! I'm super great at procrastinating when I don't find something interesting, I just find all these other things to do. My head is just so full of the mountains of things I need to do that I get overwhelmed and don't do anything. I think that's the thing with chronic pain/illnesses, we have so little control over our treatment, how we feel on a day to day basis etc. that we (or maybe just me) end up planning and trying to control other aspects of our lives. So what I did yesterday is before I started writing my essay I...

Yep that's right. I haven't had a POTS flare up in nearly a year, in fact when I first started getting POTS symptoms I didn't know that that's what it was. I spent about 6 months being constantly dizzy. Eventually it went away but I guess its back. This is my body saying that I shouldn't have left my assignment to the last minute. Haha :P So now I'm confined to the couch whilst I babysit and when they go home I'll be going to bed to write my assignment. Despite the fact that I can't even see straight ahh :( BB :)

Yesterday was an amazing day! Apart from the fact that I fell over and hurt myself in the morning then spending most of the morning on the couch watching Grey's Anatomy (wasn't so bad) haha. Grey's Anatomy is my weakness! I am in love. I think it's because I'd love to be a doctor. I'm thinking about starting to watch House MD, apparently its a really good show. Anyway! When mum came home to see my sulking because I'd fallen over, she picked me up off the couch, told me to get changed and away we went to Max Brenners and to buy a present for my neighbour's birthday (today). Whilst we were out shopping I got an email from Uni with booklist and other rather exciting things for this semester, including our placement dates. However, the most exciting thing came when I received an email confirming my placement in Toowoomba! We have to do a regional placement next semester and because I have family that I can stay with there, I really wanted to go to Toowoo...

2 years ago these holidays, I was in hospital. I spent 2 weeks as an outpatient going in everyday thinking that my life was over and how could I possibly go on. I was in too much pain. I was, for want of a better word depressed and extremely anxious. But no one saw me that way until I got there because I have this fantastic (not) ability to be panicking on the inside but look totally calm on the outside. And that was me, at times, it still is. I didn't want to go to pain clinic. It sounded like a place where people talked about their chronic pain problems. I didn't have chronic pain... at least no one had explicitly told me yet. I wanted to be normal, to not be in pain all the time, to go to school. Not get bumped from doctor to doctor, none of whom could tell me what the hell was wrong. In the end I ended up at a pain doctor, who recommended this program. It was a last resort for me and my family, and I now can't imagine my life without it. I didn't want to go. Whils...

A little thought for today Blood and ultrasound results are in!!! After nearly being late to my appointment today, Dr Woodbridge had some test results for me, and whilst they weren't good per say, they are answers. High eosinophils, which was expected as they indicate histamine responses (allergic reactions), scratch that, seriously high eosinophils. Dangerously low vitamin D, low pretty much all of the B vitamins and plently of other things. But... no autoimmune thyroid disease and a small benign cyst on my thyroid. Not big enough to cause any concern though so I'm super happy about that. He has diagnosed me with Undermethylation. This is seriously confusing, however I've researched a list of symptoms: Depression High salivary flow High tear flow Never dry eyes Good tolerance of cold Poor tolerance of heat Unexplained nausea Hyperactivity Frequent colds and flu Phobias Highly motivated Hard driving personality Poor pain tolerance- I'm a bit unsure ab...

I'm back!!! :D My dad surprised me on Sunday and said that we were going to Sydney. I love Sydney. It's where I was born, grew up and whilst I left when I was 9, I still consider it my home. Don't get me wrong, I think it would be really hard and sad to move back down because of all the wonderful people I have in Brisbane, but every time I go there I just am happy, I forget about my problems and enjoy my time there with family and friends. Sunday also marked the first time I'd been on a plane with my hip issues. I was very nervous. And whilst it would have been better if I'd had an aisle seat and been able to walk around and if our plane hadn't been 3 hours delayed haha. We actually got on the plane and sat there for 2 hours before being told we had to get on a new plane because they couldn't fix whatever was wrong with our plane. Oh well, not a big deal. We'll live. It was a nice trip actually and we saw a lot of family and friends I hadn't seen i...

Yesterday was my dad's birthday and we took him out for dinner at a cute little 'French' restaurant. I say "french" because no one there spoke french haha. However it was a lovely looking place and I was actually pretty excited to go. However that changed. Let me just give you a little background on me and restaurants. I hate eating out, especially at places I have never been. Sure the little thai place up the road is fine or the fish and chip shop that we've already sussed out, but I don't even like eating at families or friends house because I'm always seriously worried about whether I'm going to have an allergic reaction. I get really anxious around food, apparent from when I'm home. And even when I am, if someone brings peanuts or starts cooking eggs I run into the counter. We don't have peanuts, peanut products or anything in our house because I'm severely allergic, however my parents don't mind the occassional poached egg. Whi...

So I thought I'd share some of the photos I took whilst we were away on Fraser Island. Some have crutches, some don't. Just depends on how my hip was at the time. We climbed up rocks and over trees to reach the top. The view was amazing! SO worth the pain. Longest and most painful walk. The road was sand so crutches were no use. Found a stick to help me through. Ridiculously big tree! Walking up sand hill on crutches... not a good idea! The beautiful beach! So worth swimming in, despite the fact it was freezing! Dad and I. And my sticks of course It's the middle of winter but the water was so fresh and amazing. Freezing but amazing!

I planned on posting this last night when I got back from my holiday but I got halfway through writing it and couldn't write anymore. I don't often talk about my allergies. Maybe because they are just a part of me, or maybe because I hate thinking about allergic reactions and how close I come to death. For whatever reason I stopped. So here is my entry... started yesterday and finished today. I've just gotten back from my (nearly) week long holiday with no internet so sorry for no posts. I had a really good time and did a lot of relaxing on the beach, however we also did a lot of walking which was seriously not great for my hip! Fraser island is beautiful and I hope to go back soon, although maybe with less walking. I think we did maybe 10kms of walking, whereas I don't think I've walked that far in 6 months since I hurt my hip. Everything was great until last night when I had a pretty bad allergic reaction to an unknown food which has left me pretty tired and sic...