It has been two weeks since I last took methotrexate and life has gone steadily downhill. The pain is worse. I am not sleeping well. I wake several times in the night and about three nights a week I lie awake from 2am to 5am because the pain doesn’t allow me to sleep. And that’s after taking oxycodone. At around 5am exhaustion takes over, until my alarm goes off at 6:30am.
So I would say that methotrexate definitely does help my symptoms, by about 30-40%. Enough to notice…enough to make a severe pain day into a moderate pain day…a moderate pain day into a mild pain day. Which is a shame, because I can’t take the stuff. The side effects are too terrible.
Three days ago I could still tolerate the pain and go for a slow jog. I could also go to the gym and do my usual workouts – Yoga, Pump and Spin. I wasn’t training as hard as a few weeks ago, but training is training, and it still gives me benefits even if it’s light.
Today I went to the gym and I couldn’t finish the class. It just hurt too much. My hands couldn’t grip the weights. My knees and ankles screamed on the squats. There was lots of oblique work, but I couldn’t twist my torso. My hips felt seized, or is it my lower back? SI Joint? But I couldn’t twist without it feeling like knives stabbing me through the hips and lower back area.
But worse is the weakness. My hips actually felt like they were collapsing…so I stopped. (Duh! I hear you scream J )
It’s hard to walk out of a class half way. But it’s worse to lie in the middle of the floor and have everyone have to step over you…
Sad attempt at humour…
Anyway I was hoping that somehow I would be able to function without heavy duty DMARDS. Like maybe, over time, I had improved and now I don’t need these meds anymore. I know, ridiculous optimist.
But there’s always hope, right?
Not so much…
My rheumatoid arthritis is completely out of control. It has been for years. I am completely at its mercy, though I pretend that I am not. I have a very high pain tolerance, because pushing through the pain is the only way I can have any kind of life. I push myself in the gym because I know there are many benefits of exercise. I push myself to try and keep working, even if I am not making any money, because I need to feel like I am still skilled and capable and worthwhile. And I laugh and smile often, because a life of misery is no life at all.
The problem is there are no more drug options for me. I have tried all the DMARDS I am eligible for under the Australian PBS. There are other treatments, but they are expensive, and I don’t qualify. One rheumatologist suggested I become independently wealthy and then come back and see him again. He said until then, there was nothing he could do for me.
You can imagine what I wanted to say to him at that moment. But I needed his help so I smiled and nodded.
But this is the thing. The Australian health system has very strict rules about who ‘qualifies’ for biological DMARDs. I don’t meet the criteria. Not now, and I probably never will. There are many, many other people like me. And there are rheumatologists who bend the rules.
I need to find one of those.
I will explain the system in my next post. Because it’s truly appalling that the Australian government is happy for people to live with excruciating pain, risk permanent joint damage and a life of disability because these drugs are too expensive. Surely it’s more expensive to have people like me on disability support, 100% subsidising my (much cheaper admittedly) medications? Would it not be better to try everything to get me into remission so that I can work, pay tax and contribute to the government coffers?