So back in March I ended up having a massive flare up in my ankle after some dodgy dancing - it was swollen like a balloon, and I couldn't walk. I was given a prescription for codeine and a pair of crutches and off I went with my life. Little did I know these two things given to me would transform my arthritis journey.
Once the flare in my ankle was somewhat better, my crutches were just dumped under the bed and forgotten. Now obviously, I'm in pain practically every day but I just got on with it - it wasn't too distracting or limiting, it was just there. Roll on September this year and I find my whole body is flaring - my knees, ankles, back, neck, fingers, jaw, elbows and wrists. Now your typical Ibuprofen or Naproxen has very little effect when I have an increase in pain. So I see my paediatric rheumatologist, Dr. Bale as well as my soon to be primary rheumatologist when I transition fully to adult rheumatology. They prescribe Etodolac, not one they often prescribe but thought it would be good for me - they couldn't have been more wrong.
But, just 2 days in and I had the most severe stomach cramps, even when taking Lansoprazole. I don't know if it actually helped my arthritic pain, but the stomach pain was so bad I didn't even catch a second to breathe let alone think about my arthritis.
So I quickly stopped that and then went to a GP who prescribed Meloxicam, another NSAID. Thankfully no side effects, but also no effects on my pain levels. Consequently I visit my GP for a second time and thought hmm - what is the only thing that has helped my pain other than a glass of sauvignon blanc? Oh yes, that codeine stuff actually did well when I hurt my ankle, let me ask for some of that. And sure enough the doc agreed it would help and we were both right. Still some pain but oh my goodness I could actually walk without a limp! I could write for longer than 30 seconds at a time. I could bend down without my whole back stiffening up.
But as always in one of my life stories, there's a downside. It only lasted a week. And on top of that, because it is a narcotic, they can only prescribe it rarely to avoid addiction and stomach problems is other side effects. So I give it a few weeks, taking a selection from my growing pick'n'mix of painkillers every morning. We get to November and I see a new GP who prescribes an NSAID I haven't tried before - Celecoxib. He also reluctantly agreed to prescribe some more precious codeine as a back up if the Celecoxib didn't work.
Well... it didn't. But I paired it with the codeine at the same time, and it really made a difference, more than if I took the codeine alone. So my plan now is to take the Celecoxib daily if needed, then get a new codeine prescription every few weeks. And I'm still in a lot of pain, but it's getting better... I am finding things that work for me!
Now coming back to the whole crutches thing, I saw online that a lot of people with arthritis and other rheumatic conditions use their crutches/walking sticks/canes to relieve pain. So I give it a go... and well it took some getting used to. I often have one leg/knee/ankle/hip that is worse than the other, so I will always try to support this one with my crutch, without jeopardising my other leg. The plastic handles are also quite abrasive on my sensitive hands, but I've put a load of socks on it and it seems to have helped. And my biggest complaint, is the pain in my wrists. Oh my gosh why does something that is meant to help stop pain cause so much pain in my wrists and hands. But being honest, you've just got to deal with it to be honest and decide which one you can cope with better - totally dysfunctional legs or stiff wrists - I often choose the latter.
To be honest, there's 4 main reasons why I use my a crutch.
1) To help with my pain... duh.
2) I can whack people who piss me off.
3) I can actually sit in the disabled seats on the bus without getting stared down by some old bag (sorry, not sorry!) staring me down.
4) They're great for opening doors without doing much!!
5̶)̶ P̶i̶t̶y̶ f̶r̶o̶m̶ o̶t̶h̶e̶r̶s̶
I DON'T WANT PEOPLE'S PITY I WANT UNDERSTANDING!!! (but that's a whoooooole other blog post)
Something quite funny happened the other day when I walking outside of college. I was hobbling around with my crutch as usual and then another boy the year below who also had a crutch engages me in a convo that went a little like this...
Boy: "What do you have your crutch for then..."
Me: "Oh I'm just a cripple what about you?"
Insert pure shock on boy's face here
Boy: "Oh.... um... I broke my ankle"
And then he walks off looking mortified as me and my friend cackle to each other.
I love the word cripple. It shocks people... makes them feel uneasy. It gives them just a very small taste of what it's like walking in my shoes day after day.
Now I understand some people in the disabled community hate the word and don't like others saying it. And that's totally fair enough, I used to hate the word with a passion. I was verbally abused with the word and mocked. I would go home after school and just cry a river from my weary eyes. But then I realised the best thing to do is simply just embrace it. The moment you accept your disability and what that means, all these hateful words like cripple just mean nothing. It's like if someone calls you disabled - Like yeah I am disabled, no shit Sherlock.
This blog is dragging on now but we have one more c word to write about before i can go eat some chocolate - these steroids are making my stomach churn oh my goodness the hunger I have is actually insane. Anyway, my argument is why are chocolate bars so inaccessible to disabled people?? Its not really ever talked about, it's usually just public transport, stairs and clothes. You might be thinking where am I going with this but sit tight because chocolate is the bain of my existence. Okay that might be a bit extreme but still.... it bloody hurts my hands. And there aren't many chocolate bars that don't require you to snap it off except for like mars bars and twirls but I'm not keen on them, I need my dairy milk. In fact it is most common with Cadbury actually. So yay to mars, go you because you're accessible. As for Cadbury, you guys need to up your game because I wanna eat my chocolate without my fingers feeling like they're going to snap off.
That's the end of this long blog, but I had 4 c's to talk about - crutches, codeine, cripples and Cadbury. And i'm a poet, I just can't resist some nice alliteration.
Of course if you disagree with anything in this blog then just leave a comment or message me on Instagram @teen.with.arthritis . Thank you for reading!!
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