hypermobile spoonie

For every chronically ill person, there comes a time in their life when they are diagnosed. When someone sits across from them in a doctors office and says the words that they either dread or are relieved by. For some it may be a shock, for others it has been coming for weeks, months of potentially years. If you know it’s coming, there is always a sense of anticipation and anxiety before the appointment. What will happen? Will you finally get answers? How will you react? Ofcourse everyone is different. Some people will cry tears of joy and relief, others of sadness. Some people will be elated and throw a party, whilst others will lock themselves in their room. This may take days, weeks, months or years.  It can take a long time to get diagnosed. You can be sick your entire life and then one days someone tells you the news that really, you’ve known all along but somehow it still rocks you to the core.  2 weeks after christmas I’ll turn 19. A week after that I have my a...

Resting and taking time out for yourself is very important! Overdoing things just makes everything worse. I'm really bad a pacing... I always have been and it's something I really need to work on. If someone asks me to do something I have huge issues saying no. However, today I'm saying no. I was meant to go to the shops and buy some makeup and christmas presents, however I woke up very very early from a nightmare (EDS and anaesthesia) and after I got home from hydrotherapy my ankle became really sore. I had a shower, cooked chicken and veggie noodles and minestrone (for later) and now I'm on the couch with my ankle propped up. It's very sore today so I decided to do all my jobs tomorrow. I need it to be ok for placement so I am pacing myself. It probably has something to do with all the physio and stuff I did yesterday. But it was still worth it. I didn't want to of to the pool this morning, but I have only missed one day from being very sick so I dragged mys...

I am so sore today! Yesterday I went out with my friend to a theme park which required the most walking I've done in a long time! Then I went out to dinner with my neighbours :) Don't get me wrong, I had a great day but by the time I went to bed, the 'what I like to call hypermobile pains' had started. I get these excruciating pains, that mainly start in my knees or ankles. They feel like someone is crushing the inside of my joints and I can't reach them. They usually start in one place and then migrate. For example, one day I had it start in my left ankle, it then began in my right one as well and the pain moved up until it was from both ankles to both hips. This pain is the worst and is an insane kind of pain that is really hard to describe! So I put a heat pack on my knee and laid awake for a couple of hours until I finally fell asleep. Then I was up early this morning to go to hydro. My calf muscle on my right leg is killing me today and I'm exhausted! H...

I know I've been AWAL lately and I'm so sorry! There have just been so many things going on. I've been doing a lot of physio and rehab to try and get me to placement in one piece. Plus, exams were really stressful! Now I'm on holidays for 2 weeks and then its placement so I promise I'll be more active! I know I said that last time but I mean it this time :) Tomorrow I'm off to a theme park with my best friend. I'm very nervous as I won't have my crutches and will have to walk everywhere, however it'll be a good test for work. I still haven't gone back to work and need to talk to my physio about in on Thursday. They want me back and I really feel I should go back because I figure my ankle is probably going to hurt for a long time, therefore I should just go back. Don't get me wrong, I don't want to go back, but I know I really need to. I need the money and I can't afford for them to fire me. The thought of going back though makes me ...

Ok so I know its been forever! Like 2 months... but I'm back :D Everything has been pretty hectic here. I spent 13 weeks in a fracture boot and tomorrow will be 15 weeks since I fractured it. I've still got my crutches but I'm hoping to get off them in the coming weeks and maybe even get back to work. I'm excited/nervous about going back. I don't really like working there, its tough on my joints and I'm not treated very well (its full of gossip and bitching). But at the same time, some of the people are lovely and a lot of people have left so I should have quite a few responsibilities. Also, its a job, it's mind numbingly boring, so I can clear my mind and I get paid. I'm not sure how my joints will cope with it all but we'll see. And once I start working again I'm going to start looking for a new job, something where I can sit down! In other news! 2 weeks till exams and I'm freaking out about everything! I can't do this year again, I...

A while ago I posted saying that I wanted to take part in a bike ride for charity in a couple of years. I really would like to do this because it gives me something to aim for in my life and something that I can work for DESPITE everything else. Whilst my progress has been stalled over the past couple of weeks, thanks to breaking my ankle, I've devised a plan to hopefully get me to where I want to be. I'm not one of those people that can say, before chronic pain/illness I was fit and then it took everything away from me. I didn't do very much before I got ill. When I look back on it, it was probably because my joints always ached (due to hypermobility) however, I never actually thought this wasn't normal. I danced and did gymnastics and trampolining, all things aided by my hypermobility. I still love to dance, but now chronic pain decides when I can and can't do it. So I decided that once my ankle heals there are going to be some changes made. I actually like bike...

Today was a busy day spent at uni with my friend, sitting for 5 HOURS trying to work our how to do our assignment. Thankfully I think we've worked part of it out, I'm going to leave the rest for tomorrow. The day didn't start out so well, as I barely slept all night and then chose for some unknown stupid reason to wear my hair up. No sleep + tight hair= migraine! Then my ankle had been aching all day and it just got worse and worse to the point that I actually had to take off my boot in my sign language class, which didn't help. So now I've had a shower, taken my boot off and am lying with my ankle resting on a pillow waiting for my mountains of pain killers to kick in. So far... no luck. I don't know how much longer I can keep this whole uni + ankle thing going because I get home and I'm exhausted. It's not just my ankle that hurts, the pain goes all the way up to my knee. Not to mention the fact that I have all my normal joint pain as well! Ahh thi...

Yesterday was a pretty hectic day! In the morning I went to uni for a few hours and then rushed home for my physio appointment. I was greeted by my mum (who took the day off) with an amazing lunch! A sandwich in the form of a french baguette with salad, turkey and cranberry from my favourite french patisserie! It was so special! She'd also picked up some plum vinegar (my childhood in a bottle, like soy sauce) and dairy-free chocolate chips. It just made me so happy! Later we even stopped and bought my very first Salted Caramel Coconut Icecream :) So good!! This of course was all in preparation for my first physio appointment post fracture. And although I'm only 4 weeks into recovery, I felt it was time to go and have a chat to my physio about everything. She's like my rock and knows pretty much everything about me, as I've known her now for over 6 months! Which I can't believe, but anyway! So firstly I just went in a chatted to her and we tried some pointing and...

When you live with chronic illnesses, just getting through each day can seem like a challenge. It becomes a lot harder to find enjoyable things each day. Everything becomes a challenge that needs to be overcome. When I hurt my hip, it was like I'd fallen into a hole that I couldn't climb out of. I spent each day lying at home thinking about how much my life sucked and starting to believe that maybe I was crazy. My scans were clean, there was no reason for me to be in pain. I started wishing with every scan that something would show up, just so that I could say 'I told you so' to all my doctors. Then I met my physio. She showed me that I wasn't crazy, finally someone believed me. And not only that, she showed me that there might be a reason behind all this, she gave me answers. She pulled me out of the hole. I was getting back on track, going to physio every week, doing my exercises, improving. I thought that everything was looking up. After all, I went from not bein...

I've just gotten back from other morning at uni and I have the best news! Apart from the fact that it was super cold this morning, once we got to uni I logged on to my email and found one from my tutor for the winter subject that I did over the holidays. Why I was so upset yesterday was because I'd received my results from the subject, and it said I had failed. I did not at all expect to fail because I did very well in the exam and felt quite confident in the essay that I wrote. I was very upset yesterday and spent most of the night crying, feeling like a complete failure. Also I think that everything had been piling on which made it worse. So last night I sent my tutor an email asking for my essay result etc. and today he replied saying that he was unsure why my results were coming up as a fail but that I had PASSED!! This made me so happy I nearly screamed in the middle of my tutorial! Later I got another email saying that there had been a technical error with my results an...

Sorry for being so MIA recently, a lot has been happening! My wonderful friend Potato came out of her surgery obviously feeling a bit battered but it was successful, which is such a relief for everyone! I've passed my 3rd week with a fractured ankle, going back for my x-ray and follow-up appointment last Monday, which was alright, apart from the fact that my surgeon thinks I'm crazy! Guess I hate doctors that know nothing about hypermobility and the non-musculoskeletal impact of it! I've been feeling quite down and sad recently, I guess I just feel like nothing is going right in my life at the moment. Yesterday I got some pretty awful news, which eventually I will be able to say, but just for the moment I can't. So I was pretty upset yesterday when I got home from university. To top it all off I haven't slept since I did my ankle and it's really beginning to get to me. It's time to talk to someone about everything, I know that, but I just need the push. I ...

Today I'm off to get my 2 week post fracture x-ray for my appointment on Monday. I'm not looking forward to it because they'll be moving my ankle and taking off the boot etc. which will hurt but I really want to know if it has began healing. This could mean the difference between going on my uni placement and missing out! Also dad and I are going to find some food for me for this weekend because they are going away on a trip to the beach. I'm not going because I can't sit in a car for long enough, so my friends are going to come stay with me. Yay for pizza and drinks! Also, I'm looking for suggestions for hobbies. I'm bored out of my mind not being able to do anything, and whilst I have started back at uni I still have a lot of free time, not being able to work and all so I need some things to do. I desperately want a dog, but that's not going to happen, and what I usually do when I'm bored is dance, which I can't do with my ankle so I need sug...

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!