(I wrote this the other night)
It’s the night before my pain management appointment and surprise – I’m in pain.
It was “easy” to make the decision to take Methotrexate (chemotherapy) for my #rheum, hell once it was not a financial concern it was also easy to inject myself with Enbrel and then Cimzia (made from synthesized mouse protein). If they were going to keep me from becoming disabled before 40, I was in!
So far no damage that’s visible on X-Rays and pretty normal blood work all things considered.
I go into my rheumatologist and say, my neck is hurting and crunching and causing me pain. Ok, go for an X-ray – nothing visible – it’s not a problem.
Me: Really? My head feeling too heavy for my neck? That’s not an issue? Ok. The crunching? You’re sure the crunching isn’t a problem? And the pain, including headaches….no, nothing?…alright…
Repeat with feet, shoulder, wrists, knees, chest…etc.
My labs are almost normal and yet – not a day goes by when I’m not in pain sometimes it’s simply an annoyance, other days, like these last two weeks, it’s all I can do not to have a breakdown. I dragged myself to work most days but I know I wasn’t fully there. Pain so intense that you can’t think is not conducive to being productive. I’ve been able to do enough to get by and I am grateful that my normal productivity covers for these off days but that’s not the point.
I’ve been to my RMT for a massage three times this month and more and more acupuncture treatments. The relief is temporary. I used to feel better for days but something has shifted with my pain. It’s not just my joints – it’s all over aches, tenderness, nerve, pain, wicked headaches that two Tylenol 3 don’t even begin to touch.
I don’t look sick. I don’t look like I’m in pain. I’m stoic about pain. I remember being in a full out gallstone attack and going to the ER in the middle of the night. I’m fairly certain the doctor thought I was drug seeking but when I turned down the second shot of morphine, even though the first one barely took the edge off (gallstones are evil), he might have changed his mind. I cry in pain in private. I hold aching parts in the bathroom stall at work. I smile at my coworkers. I push through and make jokes to people so they can’t see that my body is violently attacking me.
If you follow me on twitter, I’m sure you see a different side because that’s where I can vent and cry and lament because there are people who understand what chronic pain can do to you. Even if you don’t want it to, it changes you. It makes you think you’re crazy (it’s all in your head); it exhausts you; it can make you suicidal.
This weekend – was all about rest. Much like all my weekends. I try to reserve energy for one social outing a week (even for this introvert, that’s way too little socialising). This weekend I saw no one, except my RMT, I came home and rested. That’s all I could do. I did laundry, dishes and groceries and ended up in more pain.
I’m getting sidetracked. My point is, getting the diagnosis for #rheum and accepting that I had a chronic illness was a process one that I struggled but I’ve put off managing my pain that is not in any way controlled by my meds. When we hear pain management the first thing we think of is drugs, followed closely by addiction.
I’ve already committed to join the Pain management clinic’s Cognitive Behavioural Therapy (CBT) for 6 weeks. I’ve never been in group therapy so this is going to be an adventure – I don’t like being vulnerable in front of other people. *deep breath*
And I do hope there is a prescription. I’m worried what taking as much Tylenol 3 is doing to me and worse, it’s not helping. All side effects, no benefits.