hypermobile spoonie

Yesterday was physio day as I like to call it. It's the day when I walk into the physio and wonder is this the last time I'll be here? Not because I'd be recovered, but because I'd give up. I'm a perfectionist, I don't give up, but isn't there some point at which enough is enough? I guess that flows on to day 23's question about what do you say to yourself when you need a pep talk. Anyway, I'll answer that in a minute :) So off I went to the physio and we talked and she asked about the doctor I went to see and the tests he'd sent me off to have and all I could think about was, one day I'll walk in here and just lose it. Just start crying. I don't cry in public, I rarely cry at all over pain or illness. Sure I cry in movies but I don't cry any other time. I'm scared that if I start crying, I won't be able to stop. My point is, I started doing my exercises with my physio and I thought... I can't feel my knees. Not in a '...

Hey! Sorry for being MIA the past couple of days, things have been pretty hectic. Had a nice time with my girlfriends on Saturday, however I was so not ready to do my first shift in forever on Sunday. On the plus side, my cousin got engaged so there's going to be a wedding! I'm so happy :) Was very sore after work. Not just my hips and back, but everywhere, so I think my body just needs to get back into it and it'll be fine. Then yesterday I started my Winter Intensive uni course in the morning. But exciting news!! Which happens to relate to the day 22 question! Whilst on my break I got a call from a mystery number. Turns out it was this really important/recommended specialist offering me an appointment that afternoon. I had been on the cancellation list with an appointment booked in for September. Basically this guy is very hard to get into, so I was seriously seriously excited to get this call. This guy has come highly recommended at getting to the bottom of random, uni...

My formal. My elbow (with the corsage) has been broken for 4 weeks at this point. It was another 2 weeks before we knew what was going on. Well I'm well and truly finished my first semester of uni, only seven to go! haha :)  As a celebration, my friend and I were meant to go out to a party last night, however she isn't 18 yet and no-one told us it was 18+ so I didn't want to leave her to find her own way home so we went into the city for icecream before heading home. All in all it was actually pretty good, because I know that I would have been super tired and sore today which would have made my babysitting job extremely difficult. Tonight however I'll be making up for it ;) My parents have gone out of town so I have a few friends coming over for a small party. Pizza, movies, drinks, that sort of thing.  With my rock. At Pain Clinic 'graduation'. Day 18: Do you think you've become a better person through being ill? Explain  I have no way to mo...

Day 17 of the 30 day chronic illness challenge really got me thinking. Day 17: How would things be different if you weren't ill? This is a hard one because being ill kind of defines my life at the moment. One day at work I was complaining to my friend about how my life seems to revolve around doctors appointment's and physio sessions and she told me 'schedule your appointments around your life, not the other way around.' Whilst this is pretty hard to actually do, it really got be thinking about how I define myself. There are a lot of 'what if's, how's and why's' when you have a chronic illness. Why doesn't my body work the way I want it to? How am I meant to complete a task when I can't walk? What if I wasn't sick. The last one is probably the toughest to answer, because many people end up becoming defined by their illness. Before I had chronic pain and everything that came after it, I had severe allergies. Correction. I have sev...

I'm half way through the 30 day chronic illness challenge, yes! This challenge has already taught me so much and I can't wait to finish the rest, although I don't know what I'll do when I finish. Well I officially have one exam left to take on Friday before the end of my first uni semester :) I'm so ready for a holiday! Come Friday night I'll be out partying/ drinking my sorrows away after exams. I'm pretty keen actually, especially after this semester has been so stressful. I know that a combination of heels and alcohol won't have me feeling amazing on Saturday morning, in fact I'll be lucky to even be able to walk, however I'm so ready to party! So ready to relax. This exam... I haven't studied. It's only worth 25% and I've actually already passed the subject and there is just so much content that I can't bring myself to study :( I guess I'll be winging it on Friday. Except, I actually don't care. I couldn't care les...

After my first hospital admission for my hip... Crutch buddies :) If being chronically ill has taught me anything, its that therapy is an important part of recovery. For me, as there is no cure or really treatment for Ehlers Danlos Syndrome- Type Hypermobility (EDS-HM), my health and wellbeing relies solely on different therapy tools. From physios and OTs, to crutches and theraputty, all these tools are important to maintaining a liveable lifestyle. Purple thumb splint to ease the pain Dynamic tape holding my thumb into hypeflexion instead of hyperextension Today I spent an hour at the OT whilst we tried to figure out how to best manage my thumb, hand and elbow pain, especially when writing and occasionally when typing. We tried 4 different types of splints, different sized pens, different pen grips and it look 4 goes to tape up my thumb. In the end, the result is not pain free movement, its practically no movement and adapted equipment. Beds with tape around them to make...

So I officially used up all my spoons today. Today I went with my best friend to Movieworld (a theme park), where of course I couldn't take my crutches otherwise I wouldn't have been allowed on any rides. On the drive down my thumb splint broke so I couldn't wear it (lucky I'm going to the OT tomorrow), and then we walked around and stood in lines for hours. Don't get me wrong, I had an amazing time. It was the first time I'd done something fun since basically since uni started, but I am exhausted. I remember, in the past I wouldn't have given going out a second thought, but all the walking and standing and noise really got to be today. I'm just lucky that the fatigue didn't hit too badly until I got home, not whilst I was driving. So then my question is, when is it okay to use all your spoons (energy)? I think it's a personal choice. Some things aren't worth even one spoon, whilst others I would give any/all to do. I'm glad I went today,...

I have nothing to say today. Except that I want pizza. Yesterday's physio session was exhausting and now I can barely stay awake. I was fine an hour ago and then the EDS fatigue really started kicking in. I never really noticed how bad my symptoms were until someone gave them a name. I was always fatigued etc. so I know that the symptoms didn't start because I (nearly) got a diagnosis, I guess I was just so used to feeling crap I didn't know there was anything wrong with it. So tonight I plan on going to bed early. My dad's going out so it's just mum and I, maybe I can convince her that its a pizza kind of night. It's too late for a nap because I won't sleep otherwise, but maybe I'll take my chances and go lie down, I'm just so tired! Day 11: Why do you believe you have this illness? Bad luck, a higher power or something else? I believe that you are only given as much as you can handle. Being chronically ill has made me a better, stronger, more ...

So I'm taking the pants back. I decided to take them back, I really don't think they are right for me. I had dreams about them last night haha! Today is a rest day... I don't really plan on doing much except for cooking so healthy food and going off to physio as Thursday is my physio day. Actually they just called and asked me to come in earlier so I might go for a swim or a ride and then go off to physio an hour earlier than I usually do. I've been thinking about this for a long time and I has decided that once we got a thermomix I would stop eating wheat/gluten as I think it gives me GI issues and also plays havoc with my eczema. SO as we got a thermomix for mum for her birthday I have no excuses now. That also means that I am giving up junk food/fast food. No more crap going in my body. I need to be healthy and hopefully my body will repay me with less EDS flareups. Now that that's decided, I am researching breakfast, snack lunch and dinner ideas that are quick...

Today it rained. I love the rain and all I want to do when it rains is stay inside and cuddle up watching a movie or something like that. However I promised one of my uni friends yesterday that we would go shopping because she wants to buy a onsie and I need so clothes for pre, during and post physio workouts. It's getting very cold now in the morning and in the evenings and I can no longer exercise without feeling like I'm dying of frost bite. I have my eye on some skinny flashdance pants from Lorna Jane. I really love these and they seem so practical for cycling, pilates, post swimming, just everything. The only problem? Lorna Jane is seriously expensive. Not Lululemon expensive, but more money then I can afford. So now my problem is, do I buy them and use them all the time, i.e. wear them to physio, cycling etc. or do I try and find some other pants that I can do all these things in? Yes I could just wear my leggings, but I always feel so uncomfortable just walking around in...

Sorry I've been so absent recently. I've had loads of exams this week and I've been quite stressed and not super healthy. I don't think my body has been coping very well with all the stress and I've had some GI flare ups and joint issues these past couple of days. On Saturday night I went to a party and I paid for my choices the next day as I couldn't walk without my crutches. I do through phases where I am almost jumping off the walls and feeling amazing and the next day I can't walk. Boom and Bust. I've never been very good at managing the boom and bust and stress cycle. I guess I haven't really mastered the art of pacing quite yet. I also did something quite stupid in my semi-drunken state on Saturday. I told some of my friends what I'd been going through. Usually I would never say anything and I wish that I could take it back, but I can't. I guess in that moment I just felt safe. Now don't get me wrong, I didn't tell them everythi...

At the moment I am in the middle of my first ever uni finals. So I'm pretty stressed and stress, chronic pain and me don't go very well together. Last week it was the flu, today it's a migraine and stomach issues. I can't even drink water without feeling sick, and as a POTS patient that's pretty bad as ther are two thing I need to eat, salt and water. Currently I've got some rice cooking and hopefully I'll be able to stomach that! I can't wait until exams are over! Day 2 of the chronic illness challenge: how have these illnesses affected my life?  Well when I first started getting migraines I was virtually incapacitated. I couldn't more, couldn't work, didn't go to school and when I did I spent the day in the sick bay, I spent all my time crying and wanting answers. Eventually, after attending a pain clinic and then months later a neurologist I managed to finish high school and get into my preferred course, occupational therapy. Hyper...

So recently I've been seeing a lot of these 30 things about me and my chronic illness on instagram and I thought... why not? Everything has changed so much over the past 2 and a half years in my life and I thought why not document it? Things have been pretty hectic recently with illness and everything. It's been very overwhelming as I'm still waiting for a diagnosis but having more flare ups and experiencing more symptoms. I had a serious flare up the other night that woke me up at 2am thinking I was dreaming. I ended up sleeping with my mum in the spare room. I cried myself to sleep. I don't ever remember being in that much pain before in my entire life, but maybe it was just because it was so late. I guess I have something else to tell my physio. She probably thinks I'm insane as I swear every week I come back with something else that has happened. Is this just the way my life is going to be now. That night was a very low moment for me. I usually never cry ove...