I saw these photos posted on HMSA’s facebook page for HMS awareness week, which was last week, and realised how uncanny they related to me.
Just as I can imagine a lot of you do, I always hated going to physio so so much, especially in the early days before diagnosis. Why? Because I knew it would just put me in more pain that I was already in. The main reason, in my opinion? No-one could explain why I was suffering so much and why I was experiencing the pain I was. The only explanation they (the medical professionals) could provide me was “growing pains” and dismissed me over and over again, even while I knew it wasn’t just this, and was, in fact, much much more.
Growing pains do not cause someone to be stuck in bed for days, sometimes even weeks, at a time because locked-up joints and pain forced me to remain; growing pains do not cause someone to sleep almost 20 hours in a 24 hour day; growing pains do not, when I made it out of bed, cause someone to be completely exhausted after only a few steps or causing the need to collapse upon making it downstairs (if I could even make it that far); and growing pains certainly do not cause a 14/15 year old girl to walk around like a “hunched up old woman”! Yes, this is genuinely how I’m described when I have one of my major flare-ups, among other things… only in jest, don’t worry.
However, their answer to growing pains and the extent of pain I was suffering was to send me to physio. I can understand why, stretch the muscles a bit to compensate for the “growing” I was doing, apart from the fact that I was the sportiest girl ever in middle school, not to mention the shortest because I don’t think I’d grown since year 4. Nope, it just increased the pain, and left me hurting more than usual for the next few days (not surprising knowing what we know). All the problems listed in the photos above, I seemed to have with my physio and she wasn’t all that sympathetic either. Rather than understanding that the exercises mustn’t be right for me and what was going on, she just assumed that I wasn’t doing the exercises at home, and that this was why I was still in the same amount of pain by the end, as I was at the start. We soon gave up on that after a while.
It’s not all bad in the physio world though, it was a specialist physiotherapist at RVI (that was after several x-rays, MRI scans and blood tests… and THAT was after finally being transferred to the RVI after years of pushing at the doctors for a referral, or just to do something) who diagnosed me. After looking at my notes and asking me to explain, she then asked me to stand up so she could examine the affected areas. What happened then was like a weight off my shoulders. Why? SHE FINALLY BROUGHT ABOUT A DIAGNOSIS. YIPPEE. As a physio, she could obviously see the hyperextension of the joints and my flat-footedness. Not only was she the one to diagnose me, she explained to me what it was all about, spent time and effort arranging bits and pieces for me for school and for university applications and how to inform them, on top of other things.
Out of all the phsyio’s I’ve visited in my life (for whatever reason), Liz was the only one I didn’t dread having to go and see, because I knew she would be as gentle with me as she could while still also trying to help make me feel better. The pictures above really cannot be applied to her, in any way possible. She really was my saviour and I cannot thank her enough for it.
You might be able to relate when I say that half the battle is knowing what is wrong in the first place. Not knowing what is wrong and why you’re feeling the way you are is just as bad as the illness itself; because you don’t know what might make it worse or if there’s anything that can and will make it better.
So that’s another little piece of my journey unravelled.. At some point I will write up my story so it’s all in one place, but as you can imagine there’s a lot to go through and therefore a lot of typing – definitely not something I can do off the top of my head, and definitely not after this week! I hope you guys all have better experiences with phsyios than I ever did, and find your Liz.. if you don’t already have one!