Have you ever had a bad dream, where you found yourself – somehow – in a place or situation in which you’d never wanted to be? That’s what I’m waking up from, only it’s not a dream. As of midnight, an hour ago now, I’m on medical leave. On ‘short-term disability’ leave, due to some cognitive issues. Adrift.
It’s only for 2 months, but I feel… I can’t even describe it. It’s now 01:00 and I can’t get back to sleep, I’m too upset. And if you know me at all, you’ll know that I’m never at a loss for words.
Why am I so upset about being off work for a couple of months? I’m sure people will tell me things like: “Oh, you’re so lucky…
- to be able to sleep in!
- you’ll be able to live in sweats for a couple of months!
- to not have to deal with rush hour traffic!
- you can binge-watch TV shows!
- you’ll be able to do whatever you want!
But the reality is that I enjoy going to work. My team is a fantastic group of people, each of them kind and caring. And I’ve said for years that I have the best job ever; I get to give money away, to hospitals, medical schools, and organizations that help patients.
For a bioethics professional like me, it’s a fantastic feeling to have a hand in large-scale programs that will make long-term differences in patients’ lives; philanthropy. Making a difference in the lives of people like me, who never expected to need so much medical treatment and healthcare while still relatively young.
And as for all those comments I’m sure to hear, I have to admit that I’ll probably want to smack anyone who says them. So my replies will be:
- I’ve been waking up at 05:00 for more than 30 years, even on vacation – that won’t change.
- Wearing sweats just isn’t my style! I like to dress up; I don’t even wear jeans most of the time – even though we can wear them every day at work!
- I didn’t have to deal with rush hour traffic most of the time; I’d either go to the gym before work and avoid the worst of it or I’d car-pool with my husband and let him deal with it!
- Watching TV, especially now, isn’t something that I particularly like to do; I used to do crafts while watching TV, and it makes me sad that I can’t do that anymore because of this nasty disease.
- Do what I want? What I want is for this disease to just go away, for all the symptoms to disappear – to vanish. Or even just a few of them; the excruciating pain (7 different kinds), extreme (autoimmune) fatigue, joint damage, tremors, and weakness…
I dream of not being in constant pain, so bad that I was throwing up from pain literally every day. At the office.
So I’ve spent the past few months fighting this, ever since the idea of a temporary medical leave was first raised at my specialist university-hospital clinic. I didn’t want to step aside from my job, even temporarily. I’m good at it, and I’m passionate about it.
And, to be honest, focusing on my work has helped me to deal with this disease; it forces me to focus on something other than the pain and the multitude of other symptoms.
So last night, talking with my family physician, I felt that I somehow hadn’t fought hard enough; that maybe I could have done more. But what?
My first thought was that I should have downplayed my symptoms – new and old. But I know, from my own bioethics background, that it’s a bad idea not to be fully honest with your doctor.
Then I thought back to last May, when I was a Patient Partner at the Canadian Pain Society conference. I attended their Annual Scientific Meeting, and was able to talk with pain specialists from across Canada as well as other countries.
Specialists from a range of fields, all dealing with chronic pain conditions; anaesthesia, chiropractic, massage therapy, neurology, nursing, occupational therapy, psychology, physiology, physical therapy, rheumatology, and more.
Some of them work with patients who have the same rare disease as me, or research it: Complex Regional Pain Syndrome (CRPS), or Reflex Sympathetic Dystrophy for folks who still prefer its old name (RSD).
Whenever I’d seek out one of these specialists, or they’d come to find me, they’d always be surprised that I was ‘still working’. At first I thought I must have a milder case of CRPS than other patients. But when I asked them about that, they told me that wasn’t true.
My case of CRPS wasn’t ‘mild’. A mild cases didn’t require the series of stellate ganglion (nerve) blocks that I’d had in the day-surgery operating room (OR). Or the Bier blocks (also called IV blocks) in the OR, nor the additional ten or so ultrasound-guided nerve blocks I’ve undergone. Not to mention all the medications that have been tried.
When I asked my family doctor last night whether there was anything else I could’ve done, his answer made me cry:
The only reason you’re still working, it’s because you have such a strong… [pause]… personality.
Strong will.
I know you.
Anyone else would have stopped working months ago.
Maybe as soon as they were diagnosed.
You’ve been fighting this disease so long, you might have made it worse, long-term.
You can’t keep going to work, vomiting from pain.
Hiding it.
All of that will cause more health problems.
You need to listen to us now, Listen to your doctors.
Stop fighting so hard, trying to pretend you’re okay.”
So I listened. And am now… adrift.
I’ll write later about the ideas and instructions he gave me, what my family doctor wants me to do on workdays – when I’ll no longer be getting up and going to work. My individualized treatment plan, for the next 2 months…
It’s 01:30, and the alarm clock’s going to go off at 05:30… then I’ll begin the first day of my doctor’s plan for me, during my temporary medical leave. So I’d better try to get some sleep.
As always, thanks for stopping by. I wish you happiness, whatever you’re doing and wherever you are ‘-)