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...