I accept

I know its long, my posts won't usually be this long I promise!

I’ve changed. I only just realised it. I no longer look at my reflection and are disheartened by the crutches starting back at me. I’ve accepted them. Acceptance. It’s a long road, which I’ve only just started to travel. It comes in waves. Yay for diagnosis and acceptance, relief one day, I’m in too much pain to get out of bed the next. Life was never meant to be a picnic. But suddenly all those flaws that I’ve seen for years make sense. I should not be ashamed by them, they define me. They make me who I am, and as much as I hate to say it, they make me a better person, a stronger one. When I look in the mirror I see the tilted head, possibly the coping mechanism or cause for the chronic migraines, I see the hyperextended elbows that I used to amuse my friends with when I was younger, now a source of pain and last but certainly not least, I see the uneven stance, slightly leaning to the left that I have taken up as a result of my hip pain. Three visible flaws, a multitude of problems. 

Of course my journey didn’t start two and a half years ago with the first doctors appointment for the seemingly never ending headaches, it started eighteen years ago, when I was born. Hip dysplasia. She’ll grow out of it. Don’t worry. It’ll be a party trick. It was. And I mean was. You know when you get told that your doing something wrong but you never even noticed it until now? Well thats my life down to a tee. I was born with hip dysplasia, hyper-mobile joints, or double jointedness as its more commonly known, the doctors told my parents that I’d be fine. And for the most part I have been, until recently. Turns out I’d just been walking around for eighteen years with my clicky hips, ankles, knees, elbows, wrists, fingers and neck all ominous signs that something a little more serious was wrong, but failing to notice it. So you can imagine my surprise when the physiotherapist said to me ‘You have to relearn to walk, you’ve been walking the wrong way your entire life.’ So what did I do, I reevaluated everything I knew about my life. I’d actually been doing this multiple times for the past two years before I got told I had to relearn to walk. Basically ever since I’d become a serious medical mystery, so much so that any doctor within a two kilometre radius of me would basically run for their life, because, no one knows what to do with me. 

It started with a headache. One day became two, then two, four then four, eight and then it was over a week of a debilitating headache that couldn’t be touched with anything over the counter. So off to the doctor I went. One MRI and a whole heap of nightmares about brain tumours later, I got the all clear. I clearly wasn’t dying of a big fat brain tumour. But, I was however no closer to finding out what the hell what wrong with me. So a week suddenly became six and soon it was two months and yet again I’d missed too much school, failing miserably my first maths exam of year 11. That was a seriously low point in my life. I’d never failed at anything, I’d never even admitted that I needed help. But I was so bad that if I managed to actually go to school my hair would be as loose as I could get away with and I would walk out of class not remembering a word the teacher had said. As I said, it was a pretty bad time. Now don’t get me wrong, I’m generally a happy person, but I was reaching that dark place where even the happiest people on the earth can’t crawl their way out of. I was, for all intensive purposes, depressed. I didn’t want to be in social situations, do homework or even watch television, all I wanted to do was sleep. So that’s pretty much all I did. 

One day my mum got sick of coming home to a daughter that couldn’t get off the couch, refused to talk to her friends because, lets face it, they don’t understand, and basically got sick of the fact that I was a straight A student, recently returned from a French exchange, who was sitting on her but wasting the $12,000 a year school tuition that my parents were paying for. So off I went to another specialist. By this point I was pretty accustomed to a chronic pain patients worst nightmare. We don’t know what’s wrong with you. So to say that I didn’t have high hopes for the appointment would be an understatement. The appointment itself was pretty terrible. Again the classic ‘I don’t know what’s wrong with you’ line was used, but…. I did get in for an assessment for a youth chronic pain problem. That’s basically when they decided that my future as a rocket scientist looked pretty grim, unless rocket scientists can works through chronic pain. It was strange entering the world of chronic pain. No one said ‘I’m sorry, you have chronic pain’ or ‘It’s not going to go away.’ Maybe it’s an unwritten rule or something to not say it, after all, it’s a pretty frowned upon illness. That’s what it is. An illness. Well not really but that’s how I see it, because my experience with chronic pain didn’t stop with a headache.

After I got check out by the ‘chronic pain team’ (or whatever name you want to come up with for a bunch of people that deal with seriously ill, anxious and depressed teenagers), helping them to come to terms with the fact that they have to deal with this for the rest of their life, I got given a date to come back and spend my two weeks of holidays in a hospital learning how to ‘cope’ with my new reality. Sure it’s not cancer and you don’t know how grateful I am for that, but it’s never going away. That’s the realisation that every CPP comes to at some point in their journey. This is my life, the rest of my life. Suddenly your future choices seem limited and an overwhelming sense of embarrassment fills you. I am embarrassed because of my illness. How stupid is that? So off I went to what I expected to be a depressing two weeks of swapping pain stories and learning how to ‘cope’, boy was I wrong.

Sure their was lots of story swapping and coping sessions, but I also somewhere found the strength to pull myself out of a seriously dark place and start smiling for real, not just to cover up my pain. Sure those two weeks didn’t ‘fix’ me, after all no ones worked out how to do that yet. However, they did teach me many valuable lessons and help me to meet some people that I’m sure I couldn’t live without. Just the thought of these professionals makes me smile, because truly, they changed my life. I’m sure that one of them in particular is probably the reason I choose to study what I do now. More on that later… 

So after two weeks I went back to school and went on living my life again (or trying to at least). I smiled at my friends, who unfortunately still didn’t understand what the hell I was going through and I went about trying to keep up my straight A grades and top French (which you’ll be happy to know I did, both in year 11 and 12). Sure I was still in pain and had a long way to go before I started to even understand the concept of acceptance, but it was a start. 

I managed to fumble my way through everything for the next year, even getting awards for academic achievement and gaining the title of music captain, before something else turned my world upside-down again. I fell over a fractured my elbow. It was a tiny fracture the specialist said. After all, it didn’t show up on the x-ray, only the MRI. It should have healed fast, leaving no pain behind. But it didn’t. After six months in a sling and multiple OT and specialist appointments later, I gave up. I knew it was chronic. No one was saying it because no one wanted it to be true, neither did I. I hated the thought of another bout of chronic pain, I was already dealing with it, I didn’t need any more. But as fate should have it, it was chronic and there was nothing I could do about it. I gave up the rehab sessions because they were costing too much and instead I went about (again) learning to accept the fact that I would be in pain for the rest of my life. As they say, build a bridge and get over it. That’s exactly what I did. Although I’m not sure I would have been able to if it hadn’t been for my previous experience with chronic pain.

I cried. A lot. When I was first ‘diagnosed’ (if you can call it that), I cried a lot. I was scared. I had a right to be. Again I cried when the realisation that my elbow was chronic finally hit me. I cried in my car after my rehab appointment. I however managed to compose myself enough by the time I saw my parents. They didn’t need anymore anguish. Again I might not be dying, but I’m still suffering and so are they. I also cried when I hurt my hip. I was at work. I never cry in public. They only times I have have been because of chronic pain. As I said, it sucks. I haven’t revealed to my parents that I’m pretty sure that my hip pain is also chronic. After all, I don’t think it’s been three months, not technically chronic, but close enough. We had to buy crutches. Again I cried. It was demoralising. Walking around the shops with people giving you looks, I’m sorry I’m on crutches, get over it. I went home early from work the day it was bad, I didn’t go back for over a month after that. Instead mum and I waited in A&E for 4 hours, only to be told that again they didn’t know whats wrong. I wanted to cry, but didn’t. The car ride home was spent with my sitting in silence contemplating my possible future on crutches, whilst mum, the hero that she is babbled on about all the doctors and specialist we were going to see. This story had a bit more of a silver lining that they others, because for once, it might have an answer, a real diagnosis. 

Sharon. She’s my amazing physio, who took one look at me and went ‘You have hyper mobility.’ Thank the lord. Not literally I actually did a silent pray saying thanks. And I’m not that religious, although maybe all this chronic pain stuff is changing me. So now, I still have crutches, go to therapy multiple times a week and wait for an official diagnosis from a rhumatologist. But, if you knew me you would know that after googling all the symptoms of the hyper mobility syndrome, I pretty much fit it right down to the last letter. It even explains why I got sent to the hospital with all the symptoms of appendicitis but no inflamed appendix. Pseudo-appendicitis. It’s me. I have this. Now to wait for an official diagnosis.

Today I looked in the mirror. And what I saw wasn’t the crutches or the hyperextended elbows, it was me. I now understand acceptance. It’s a long road, but I think it’ll be worth it. I’m now less embarrassed to admit my chronic pain. I’m sure one day I’ll wear it as a badge of honour. But for now, I think I’ll just wait for diagnosis.

Sorry its so long BB :)