I had meant to write more about my recovery and how well or otherwise it’s been going. To be honest, with the current COVID-19 crisis, I’ve been a bit busy with other things.
On the whole though, I am doing really well. I feel like I turned big corners every week:
Week 2, I came home. Pain was high and mobility was low, but I was able to be at home with my kids and that made me a much happier camper.
Week 3, there was a big reduction in pain at the two-week mark, particularly during the day. My spinal pain and wound pain became quite manageable and I was able to walk more. Night-time was still pretty terrible and I was still surviving on very little sleep – four hours on a typical night, occasionally six or seven, but in broken blocks.
Week 4. Now.
Another reduction in pain during the day, and sleeping better at night! I’m walking well, and keen to get outside and walk on flat ground and get out in the sun.
The bigger problem is being off my rheumatoid arthritis medication and so my joints are flaring. What being off my medication looks like for me is general aches in most of my joints (hands, feet, hips, knees, shoulders) and a lot of fatigue. About three days per week I’m in megaflare, with the swelling and pain in those joints being enough to force me to rest most of the day.
There’s not a lot I can do about that. My immunologist wants me to stay off my medications and it’s an opportunity for him to test for a lot of things he can’t test for when I’m medicated. My inflammation markers are elevated and he’s on a mission. That is a good thing, and I keep reminding myself of that on the megaflare days. Short term (a few months) pain for long term gain (a unifying diagnosis).
I do like the fact that the longer I’m off my meds, the more my immune system recovers and the less I have to worry about from COVID-19. I know this is just anxiety, and not logical thinking…but its an upside none the less.
I’m not enjoying being off medication in terms of pain and fatigue though. I underestimated how much methotrexate was doing for me. Still, its good to know that mtx is effective. I’m still taking plaquenil, but it’s such a mild medication it doesn’t do much on its own.
The worst is the fatigue. I assume its rheumatoid fatigue. It’s a brick wall. I need a lot of rest, but part of it could be the surgery recovery as well.
At the four week mark the big breakthrough was sleep. I can now roll over in bed at night, its painful, but doable. I’m still being woken by nerve pain in the buttocks area, which is a bit concerning…the surgery was supposed to take that away….but the pain that used to send a constant electric humming down the back of both legs IS gone. And that’s life changing.
Most nights I head to bed around 10pm, but now I’m taking my pain meds upstairs with me. Pain wakes me up at 1:30am (or so) every night, but its much less severe than it was last week. Before I had to get up and come downstairs, pain was too bad to get back to sleep. Now I can take a pain medication (oxycodone), do some stretches and move a bit, and then settle back into bed and get a few more hours sleep.
Sleep is everything! I feel much better, clearer in my mind, less emotional, happier. As I said, fatigue is still a big problem, but tiredness is not. I’m sure everyone who has RA knows there’s a big difference between being tired and sleep deprived, and the deep, unrelenting fatigue that uncontrolled RA brings.
Bottom line though, at just over four weeks out from surgery, I’m recovering well. I’m following all advice, no bending, no exercise apart from walking. But I am walking really well. If someone were watching I don’t think they could tell I had surgery four weeks ago. I’m much more stable on my feet and I walk at a normal pace now. Which is pretty freakin’ awesome. Walking used to be agony and I used to have falls if I didn’t use a walker.
The pain at the surgical site is only a “4” of “5” during the day. Moving the wrong way will still invoke a sudden “9” when I forget for a moment that I had a spinal fusion a few weeks ago. But I can do most things. Showering is easier. Dressing is still difficult, because I can’t bend but I have tools to help me dress myself.
I’m not driving yet. I don’t feel ready. I definitely can’t move my left leg fast, but its my right leg that matters for driving. My left leg is still very definitely partially paralysed. Recovering the movement and sensation in that leg is going to be a long, slow haul. I’m keen to start physiotherapy to that end.
But, again, COVID-19 means I won’t be able to access physiotherapy. I’m hoping I can get a list of exercises, and instructions, maybe there will be online resources. I’ll wait and see.
I have an appointment to see my neurosurgeon in two weeks. He is now working at the public hospital, however. I’m wondering if it will be a phone consult, because the hospital is about the highest risk place for me to attend. And this appointment may well be considered non-essential, given that I’m doing well. I don’t have any major concerns. I’d prefer to see him face to face, but it’s not worth risking going to the hospital.
The most important reason that I want to see my neurosurgeon is that I want to thank him. I want to look in his eyes, and I want him to see my eyes, see my thanks, my gratitude and my happiness. What he has given me is hope. My life has possibility. My life is open-ended again. Before “the end” was written, and worse than that, every day was written for me. A life on the couch. A life of constant, severe pain, thrumming nerve pain. Unmanageable pain. Disabling pain. Soul destroying, life limiting, life-not-worth-living pain. I was more disabled than even I acknowledged.
And now I have pain, but this is pain that I believe can be managed. It remains to be seen what the final result will be…how much pain I will have to live with. It is already less than it was before the surgery, so I am already better off.
I have a tapering schedule to taper permanently off my opioids. That’s the plan. I don’t know if that will be possible. I don’t know if my rheumatoid arthritis or my rare bone disease pain will require opioid management. The idea of NOT needing opioids is exciting.
BUT I will continue to fight for the right of pain patients to access opioid pain medications. Its an issue very close to my heart, whether I personally need opioids or not. IF I am off opioids and a healthier, more mobile person, I will be able to do more advocacy work for chronic pain patients. Most of us are too sick and in too much pain to fight back, to change the narrative around opioids. Maybe I won’t be too sick to fight this battle in the months to come.
But I digress. As I do. Back to my neurosurgeon.
He has given me my life back. He has given me potential. He has given me a future. I want him to see me walking without a mobility aide. I believe he will be very happy to see that. I believe he’s a surgeon who genuinely cares about his patients.
He took very good care of me, and there is no way I could ever thank him enough. I would like to see him in person and try though.