hypermobile spoonie

So everything is about to change. That's what I have decided. I'm moments away from being diagnosed with either Ehlers Danlos Syndrome Type Hypermobility or Joint Hypermobility Syndrome and so it's time to make some changes and accept the fact that this is what I have to deal with for the rest of my life.  I'm noticing so many more symptoms now. I don't think more are appearing, I think I'm just noticing them more now that I have more knowledge. My fingers and hands become sore faster when writing or even typing, my knees hurt and the biggest one, I can't eat one meal without feeling sick. I'm hoping its due to the wheat allergy/intolerance so when I stop eating wheat it'll go away.  It's just over a week until my mums birthday and we are getting her a Thermomix! So after that it'll be bye bye wheat and hopefully some of my symptoms will go with it. I'm considering going back to my hand therapist to talk about my hand and finger pain beca...

I see myself a positive person. I've constantly kept smiling and cracking jokes even when I'm at the bottom of a hole of depression and can't crawl out. I wouldn't say that I've necessarily even been depressed, however I do get anxious. I get anxious about appointments, pain, life in general, and especially the possibility of having chronic pain in numerous areas for the rest of my life and not having a solid diagnosis. These things scare me to death. By the time I got to attend pain clinic 2 years ago, I was in a pretty dark place. I was constantly sad and anxious, but no-one knew. I'm not sure if anyone knows now. I'm not the kind of person that cries in front of people, I don't break down, but there were so many times that I wanted to. After attending the pain clinic I managed to learn enough strategies to pick myself up again and become a more positive and happy person. I learnt how to manage everything I was going through. Yes chronic pain sucks, bu...

One month. That's what stands between me and the holidays. The 20th of June. Last exam! And I couldn't be happier!! All my uni assignments are submitted and now its time to hit the books. I'm sure that over the next month a lot of chocolate, salt and vinegar chips, GF biscuits, cakes and more will be consumed. Probably to the point of a sugar migraine, however that is exactly what I am trying to avoid. Just for the next month, I beg my body to give me good health. No never ending migraines, not elbow pain from writing and typing too much and no severe hip pain for no good reason other than my body felt like it. Now don't get me wrong, I'm a chronic pain/exam balancing legend. I've learnt a thing or two these past couple of years, but uni exams are a whole different balancing act. And usually, when I'm tired and stressed to the max during exams, pain and illness isn't too far behind! :( So please god just give me a little break for a few weeks! BB :)

Well today marks the day that my hip officially turns chronic. After doing this twice before, I'm not as scared/upset/angry/anxious/depressed as I thought I'd be. This time 3 months ago, I was first admitted to hospital with severe hip pain. About two weeks before that it all started. However that's not where my journey starts, it really started 18 years ago, the day I was born. Maybe even before that. I like to think that our lives are partly planned before we are born and that we have the power, not to change the obstacles we meet, but the end result, our destiny. I was born with Hyper-mobility Syndrome, and whilst it is yet to be formally diagnosed, my physio will quit her job if I don't get the diagnosis. I can tick off everything on the diagnostic list and more. 3 months ago, I left work at 11am after working in terrible pain for five hours. I'd just had my break and I drove 100 meters to the shops to get food because I couldn't walk. It was an awful day...

My most used/thought sentence ever. I am too tired for this. And I am. And yet I get back up and keep going. Last night I spent the night with some high school friends seeing our old school musical. We went to dinner, walked around this city, caught the train and went back to my house. We did a lot  of walking. And yes I did take my crutches, however, they didn't do much good. By the time we got to sleep, it was around 2:30am and we had pretty much all but died of frost bite. So damn cold! This morning, I got up, took my friends home and went and cooked sausages for APMA, a pain management association. So I stood up for 4 hours serving people sausages at the local bunnings on my, already painful hip. Super smart I know. By the time I got home from that, it was time to go to work. So here I was, tired, sore and feeling like I might throw up, serving customers at work. Talk about not being able to say no to things. About 30 minutes before the end of my shift, my manager gave up and l...

Today was... the allergist! Today I went to the allergist for the first time in 2 years. As you get older you go less, so from going 5 times a year, to once every 2 years has been a bit of a shock. Apparently, allergies don't change very much once you pass the age of.... 5. So 13 years later and finally my dairy allergy has shifted. It hasn't kicked itself all the way out the door just yet, but maybe, just maybe I'll be trying some food challenges. Although I'm slightly skeptical about the results. All the usuals are still here. The nuts, eggs, dairy, crustaceans, grass, dusts, wheat, cats and god knows what else! Still waiting on the exact results. Today was spent with an itchy, blue arm (photo attached) and answering questions that no 18 year old should have to answer. I got in trouble, maybe 5 times from two different people for one event in which I should have used my epipen and been carted off to hospital, but seriously, who wants to spend their 18th birthday in ...

I'm so tired I'm afraid my head it going to explode with all the information that I'm sure I'll have to listen to today. Yup that's right, mid semester break is over and its back to uni. And how did I spend my last night of freedom before uni? Working the close.... 5pm-12am YAY! So now my body aches, I can't walk and Uni... nope not for me. I think I'll do my lectures later online and go in at 4pm for my tute. I'm not sure that my body will handle anything else. Might need a long, hot bath and use my massager for a while. Gees! I can't even believe how sore I am, I knew that I would be sore because it was one of my only long shifts that I've done since I hurt my hip, but this is ridiculous. My whole left side it aching and even my leg and back hurts. This is ridiculous. Is this it? I think I'm coming to the sad realisation that I go to more doctors and physio appointments in one week than I work :( I feel like I made all this progress 2 yea...