I meant to write more about my recovery, but things like world-wide pandemics have gotten in the way. Also, the recovery is very slow. And samey. Not that much to write about.
So where am I at the six-week mark?
It feels very much like the five-week mark. Which felt very much like the four-week mark. At four weeks, I turned a corner, I started sleeping better, the severe pain at night wasn’t a given, only a sometimes – maybe three nights a week. And that’s pretty much exactly where I am now.
Don’t get me wrong, being able to sleep at night is a big difference – I am regularly getting around six hours sleep a night, some nights its only four, but other nights its eight. My little ‘health’ app on my watch confirms that I’m averaging 5 hours and 12 minutes of sleep each night.
Yes, I’m a tech tragic. I love my gadgets, including my apple watch, which monitors all this stuff.
The last week has been a little worse, pain wise and sleep wise. Which is a bit of a downer, I’d prefer recovery to be a general upward trend, but its just not the way the world works.
The pain in my spine has been worse at night. Rolling over in bed is still painful, but its doable. But I am woken by nerve pain. That’s disappointing, I was hoping the nerve pain would be gone. BUT it is only in my buttocks, NOT all the way down my legs, as it was before surgery. So it’s still a huge improvement.
The pain IS enough to wake me every night, between 2am and 3:30am though. And that’s frustrating.
The worst thing, however, is the function of my left leg. It is worse than it was before the surgery. The surgery, ofcourse, stirred up all my nerves, and moved them and created more space for them. In the process, more damage has been done to the nerves of my left leg. My strength is ok, but I have more sensory problems, and more pain. I get electric shocks just by touching my leg in various places. I have numbness in some places. I get electric shock pain in others, just from a light touch.
Most concerning is the strength though. I can’t push off with my left leg at all, there is no power. And I can’t move it quickly, it feels slow and heavy, I have very poor reaction times. I am grateful it’s my left leg, because if this were my right leg, I would not be able to drive a car. The slowness and heaviness is that bad.
So I’m lucky its not my right leg!
Complicating factors include my rheumatoid arthritis being not well controlled, because I’m not taking my methotrexate or my baricitinib. Pain and swelling are constant in most of my major joints (hands, feet, knees, hips, shoulders).
The worst it the fatigue though. I struggle to get through the day, and I have 4-6 upright hours, depending on what I’m doing. My body tells me in no uncertain terms when I have done too much. I had to attend two doctor’s appointments and go to the pharmacy one day, and the next I was flat out on my back all day. The pain was terrible, I needed to go over my pain medicine quota, and I spent the day resting.
Bad plan. Do NOT overdo it. Not worth it.
But attending two appointments (back to back, at the same clinic) and then the pharmacy is not a big ask, and it tells you about my physical capabilities and stamina. Not great.
Which is where I’m at – a bit concerned that this is “it”.
Progress is so slow, I can’t feel things changing, improving anymore. I’m sure there IS improvement, its just in such small increments its harder to appreciate. My little family and I are in lockdown because of COVID-19 and so we’re all housebound. We’re doing great, honestly, my life is not that different to before the pandemic, and we all get on just fine. But its not like we’re living a normal, busy, life.
Business has dropped off due to the pandemic, finances are tight. I have time, however. I’m getting a chance to pursue creative things. Art. Music. Reading. Writing. Photography. Time is a gift, and I am enjoying every second. I do need to rest a lot, but I think the rheumatoid arthritis is causing most of the fatigue.
I got a bunch of bloods done for my endocrinologist and there’s a few bits and pieces there that might explain the fatigue. It’s a bit of a concern, I have a phone appointment with her in an hour, I’ll see what she has to say about that.
On the whole, I’m doing well. I’m still a long way from knowing how well I will get, however.
My GP and my neurosurgeon plan to taper me off opioids completely. I’m a little concerned about that, because pain levels are high. I’m currently having to take less oxycodone than I would like to take. If I could take more oxycodone, I could DO more. And DOING is what life is about.
I don’t enjoy couchtime, I have always found it tough, I have no adapted to couchlife. In my soul I am still an active person. And the reason I had this surgery was to reclaim my active life…at whatever level that happened to be.
I am, of course, hoping to NOT be disabled anymore. I don’t know if that’s realistic, I’m a long way from there now. But the recovery from this surgery can take up to a year, so “patience” is my key word. The one I remind myself of daily.
When I can take my rheumatoid arthritis medications again, the RA pain and fatigue won’t be muddying the waters of my recovery anymore. And I will have a better idea of what my general functioning level will be.
“Able-bodied” seems a possibility still, though I’m not so sure I will be able to get to a point where I don’t need any opioid pain relief. At this point, that’s not an option, my doctors are committed to deprescribing. I’m concerned about what that will look like when I hit the wall, and can’t get any lower, or heaven forbid, even ask to return to a higher dose, because I’m not able to function.
I suspect they will refuse my opioids, given the current “opioid hysteria” climate. I hope not. Opioids have been life saving for me. I am not addicted. I used them appropriately and as prescribed.
We will see. For now, I’m walking. That’s all I’m allowed to do. On Wednesday I have my six-week appointment with my neurosurgeon. That will also be a phone consult, so it’s not going to be easy to point out where the pain still is, or show him my capabilities. I expect he’ll refer me for physiotherapy and I’m keen to start. I’ll write about that after that appointment.
The main takeaway though, is that I have much less pain now than I did before the multilevel fusion surgery. The surgery was life-changing, and I am absolutely thrilled with the results so far. I am hoping for more, and that’s a reasonable hope. It’s just going to take time.
I just need to be patient.