It is now day 16 since my three level lumbar spinal fusion and decompression. Pain levels have steadied to very manageable during the day, but are pretty flippin’ awful at night. No matter what time I go to bed, no matter what time I take my bed time pain meds, no matter whether I take melatonin or phenergen to help me sleep, I wake up at 1:30am. And the pain is terrible.
Some nights I wake at 1am and I stubbornly try to go back to sleep. But it never works. But 1:30am I am hauling myself out of bed, gingerly making my way downstairs on tender, burning feet, and taking more pain medication.
I’m no longer allowed to take my targin 30/15 three times a day…only twice now. Its part of my taper schedule. And don’t get me wrong, I’m keen to reduce my opioid use. But if the pain is bad, I don’t see what another few weeks of opioids is going to hurt. This surgery is well known to have a painful recovery.
Still. I am following doctors orders. So I take oxynorm at 1:30am. Sometimes I take another at 2:30am. Usually by 4:30am the pain is manageable again, and I around 5am I drift off to sleep for another hour. Sometimes two.
Most nights I get around four hours before 1:30 and another hour after. I am so tired. Sleepy tired, as well as body fatigue tired.
The only Rheumatoid Arthritis medication I’m taking is hydroxychloroquinine. I’m holding off my methotrexate, and my surgeon is keeping me off baricitinib until the six week review. That’s only three weeks away now. But my rheumatoid is reminding me that its still here. Ironic, given how many doctors have tried to ‘prove’ I was misdiagnosed.
Common thing that. Complicated patient. Doesn’t behave like the textbook. Must be the patients fault, right? Call it a misdiagnosis and refer on to someone else. Except a first year med student can see my Rheumatoid right now. Which is honestly a relief.
Progress is slow. There is one word that keeps shining in my brain. I remind myself
constantly to live by this word.
The word is “patience”.
I was warned the recovery would be slow. I was warned it would be painful. I am very impatient. I just want to get better. Whatever I need to do. The thing is, what I need to do, is pace. Get the right balance of rest and activity. Trying to do more than my body is capable of will only set me back.
They only physiotherapy I can do is walking, so I’m walking. I fatigue quickly though. That
might be rheumatoid fatigue, or it might be pain and lack of sleep wearing me down. But my body tells me very clearly when its had enough. A few times I’ve laid down on the couch, intending to just rest a while, and I’ve fallen asleep for an hour.
That’s ok. My body needs it.
I’m keeping up with my orders and getting them shipped daily is a good goal to achieve every day. I could use a bit of fun though.
Days like today are wearing. I’m just feeling a bit down, nothing major. I’m sure its very normal, in fact. Every day is the same, and its hard to realise that I am making progress. It doesn’t feel like it. And the 1:30am rendezvous I have with severe pain is becoming a real drag. As I said, it doesn’t matter if I go to bed at 10:30pm, or 12:30am…I wake at 1:30am. And the pain is BAD.
All the days blur together and it feels like nothing is changing. But I know it is. I know my recovery is actually going well, and I am on track.
I do have a few concerns, however.
Firstly, my leg weakness. Before the surgery, despite the compressed nerves, I did a lot of leg exercise to keep my leg strength. I was able to do squats, and push up from chair without using my arms or other assistance. I used to practice sitting on the ground, and getting up to my feet without the use of my arms. That sounds impossible, but it actually wasn’t that hard. I didn’t look elegant, but I could get to my feet, without help, without falling. On my worst days, I allowed myself to use my arms. But I always was able to get up off the floor. I knew how important that skill was, and I worked hard to keep that strength. Now I am completely unable to get up off the floor without assistance. I need a person or an assistive device, to help me. The easiest way is to crawl to a lounge chair and slowly crawl up the chair/couch and eventually get on the chair/couch. And then get to my feet from the chair. Even so, it feels risky, and I am at risk of falling. I don’t always manage to get on the couch and to my feet. The weakness in my legs is significant. Worse than it has ever been. I may have traded pain for function.
Both legs are weak, but my left leg is the worst, I can’t use it to lead up the stairs, its not
strong enough. My right leg is stronger than the left, but it is far weaker than it was before the surgery. It concerns me. I will discuss it with my neurosurgeon at my
six-week review (in about three weeks). The strength will very likely come back on its own, with physiotherapy. Its early days. It’s also possible that the nerves are still being compressed to the extent that they are causing weakness. Or that there’s still inflammation compressing the nerves. I just need to keep doing my walking, and not worry about it. I know this. But sometimes…its a concern.
And it’s frustrating. I need a rack around my toilet, else I can’t get back to my feet. I can’t get up out of a car without a support, and a leverage device. If I get down on the floor I can’t get myself back up. Obviously I don’t get down on the floor if I can help it!
The other thing probably worries me more. I believe its more likely than not that my
leg strength will return. I have a lot of healing left to do. And I haven’t even started the rehab / physical therapy yet.
The other problem is my skin around my lower back and my hips. The skin is so tender that a gentle touch feels like a cut. That is, if I lightly run my finger over the skin on my hips, it FEELS like I am cutting it with a knife. The sensation if very real. I have looked in the mirror at times to be sure that there IS no cut there. There isn’t. It’s just the nerves being hyper-reactive and firing pain signals when they shouldn’t. It’s a large patch of skin though. I’m wearing track pants exclusively, soft and comfortable. But the waist band on my hips and back hurts…just the fabric touching my skin feels like I have another cut there. The actual surgery cut if largely healed on the outside. It’s hardly even tender. But the skin from my hips to my back fells like a permanent fresh wound.
This wasn’t a possibility that was specifically discussed, but I imagine its normal too. He did dig around with a lot of nerves in there, moving them around and making more space
for them. It makes sense to me that it takes time for that trauma to heal. It is very painful, however. I can lie on my back now, but the wound is tender. And when I move it feels like I’m lying on razor blades and they are cutting my skin.
The last thing is my hips themselves. I’m honestly not sure if its my rheumatoid flaring, because sometimes it feels like that. Or if I have pinched nerves in my hips. Or if there are still compressed nerves in my spine causing the pain in my hips. Because the pain in my hips is sometimes the worst pain I feel. I’m telling myself this, too, is likely normal. Spinal fusions are painful. It’s a big surgery. Bone is cut and screwed and fused together. Nerves are moved and pushed around. There is nothing gentle about it. And it has only been just over two weeks. Very early in my recovery. I’m keeping my eyes firmly on the prize: That walk on the beach. Nothing I have described will prevent me from doing that. And despite these issues, I am STILL better off than I was before the surgery. That’s the most important thing. The pain BEFORE was much worse than this.
So that’s where I’m at. I guess I have a few kinds of pain that I didn’t expect. And some days I’m just a bit blah about the “same old, same old” of lack of sleep, and pain in my spine.
All completely normal. I think tomorrow I will not ship my orders immediately, and I’ll find
something fun to do. “Fun” is sorely missing from my life. It has been for a very long time, and its an issue I need to address. There is never time to relax and do something frivolous, for pure enjoyment. That has to change.
The Chicklet has finally got her “P” plates, I’m very grateful that she can drive me places, and help out. Other recoveries have been much more difficult, because I couldn’t drive and neither could anyone in my family. And much that I had friends that said “let me know if you need anything”, when I asked them, they were busy.
This time we have the ability to get groceries, medication and attend appointments. So on the positive side, I’m so lucky to have the Chicklet here to help. And she has genuinely discovered the satisfaction and joy of helping someone you love when they are going through a hard time. That’s a major double upside, and while today has been tough, as always I try to focus on the good.
There’s always a silver lining.