I have a confession to make

I’d rather use the wheelchair than walk.

It’s not that I can’t walk; I can. I just prefer the chair even with the strain on my shoulders and wrist. I feel safer and can do everything I need to do, and feeding and cleaning up after Ellie and Emma are just easier when I’m lower to the ground and don’t have to balance.

Around the apartment I can manage with the walker, except I can’t wear the AFO’s to use the NuStep to exercise, and changing shoes all the time is a real pain. If I had to choose between walking and NuStep, the NuStep wins every time. It works my legs and upper body, plus I stand up all the time and do “dynamic standing” (which just means doing things while standing) multiple times a day.

I also am having problems again with the right ankle. Yesterday there was a lump the size of a golf ball just below and to the back of the ankle bone. It didn’t hurt and was probably fluid but it didn’t like being squished in compression socks and AFO’s. When I did walk, the inside of the ankle had sharp pangs of distress. I don’t think it’s sprained but what do I know. It might just not have recovered from a sprain I had a few months ago. We’ve been very careful with the right leg since it had a blood clot (now two of them).

I feel a bit like a failure preferring the chair to walking, but I know I can manage it safely on my own because I’ve done it for months. I will continue to do at least some walking but will try not to beat myself up for not pushing myself to do more.

Recovery Year comes to an end

Discovering that my legs didn’t work was a game changer. It’s never something you expect or can plan for. I’ve worked hard both in rehab and out-patient PT to get back as much as I could. When I left residential rehab in October 2021, I gave myself through December 2022 to see how much mobility I could get back and how many real-life things I could do myself. I called it my “Recovery Year” even though it was actually longer than that.

I wrote out what happened so I would remember facts and emotions, and be reminded of progress through the hardest thing I’ve ever faced. I’ll keep doing that, but I’m going to widen my world to include more than just thinking about therapy and physical tasks. Because that gets really boring.

Some tasks are hard; others aren’t easy but I’ve figured out how to do them. And others that seemed impossible in the beginning are now parts of my normal life. There’s progress everywhere when I remember to look and to be grateful – and to continue that progress going forward.

First, though, I copied all of these “Therapy Notes” blog posts into 2 books, one for my intensive period (August-December 2021) and the second covering all of 2022. It feels productive and marks a turning point going into 2023. The books are only for me, something tangible to use for reference and remembrance.

This “Recovery Year” has been another game changer. Now it’s time to close this chapter and move on to whatever comes next.

Standing isn’t so hard anymore

It’s no longer hard to stand up. I’ll bet you don’t hear that every day, do you? But I realized yesterday that I can stand up pretty much anywhere, without holding on to the walker or table, and that I’m no longer talking myself through the steps of how to do it: “scoot to the edge of the chair, line up the feet below the knees, tuck in the butt, suck in the tummy, lean forward, press down with the arms and move up on the count of 1-2-3.” Not doing that whole routine in my brain means that I’ve relearned the steps and they’ve become ingrained.

Back in August, this was such a very hard thing to learn and it remained hard to do for months. I had to rehearse the steps in my head, first dropping the count to 3, but still mentally checking off the other things. But the big thing is trust. You see, I didn’t trust that it would actually WORK and that I’d be able to stand up just because I wanted to.

I trust it now. And I stand up a lot, probably not as much as you do but certainly more than I did even a month ago. Each time it gets easier and I feel more normal. Sometimes I even forget that it used to be hard. Somehow this feels really big.

Six Months Today

Six months ago today my legs gave out from under me and I went through the rabbit hole of spinal cord injury and recovery. My surgeon initially told me to give it 6-8 months to see how much functionality came back; that’s been pushed first to 8-12 months, and now 12-18. But still, 6 months is a big milestone. Being told I was an incomplete paraplegic sent me to Google to figure out what that actually meant, and it scared the hell out of me. But there was hope in it as well and I’ve gained perspective, advice, and inspiration from others with similar injuries as we share stories and tips from our recoveries.

My doctor told me at my first post-op visit to work as hard as I could in these first months after surgery to get as much functionality as possible, and I’ve tried to do just that. It’s not easy but no one said it would be, and if I need to give myself a rest day, I take one. From what I understand, patients with severe spinal stenosis can expect up to 80% restored functionality, but it’s a mystery which patients get more and which get less. Sometimes nerves regenerate and sometimes they don’t. I’ve been advised that I might not see any additional improvements in the next six months and should try not to be discouraged.

I never thought six months ago that I’d be able to do as much as I can now. I was depressed and mostly helpless, unable to even stand without help. But now I’m home with my beautiful kitties, in a place that accommodates my physical limits, supported by friends and family. My new normal keeps resetting as I regain abilities but I can’t do everything. That’s okay as long as I keep trying to do as much as I can, and to remember to give thanks for all that I have.

Where will I be in another six months? That’s pretty far out. I’m just taking one thing at a time. Next will be a new set of custom AFO’s that will be fitted on Friday. I’m also adding in extra walking at least four days a week, as well as working on the NuStep almost every day. Hopefully a new wheelchair will be in my future in the next few months. But in six months? Maybe I’ll be using a walker instead.

Let’s hope I can figure out how to put my shoes on with the new AFO’s. That would be a game changer.

Fitting for AFO’s

At last, at last, I went for a fitting for new custom AFO’s today, bringing with me my prescriptions from the foot doctor and his chart notes from our visit. The old ones are “off the shelf” rigid plastic things that I detest. The new ones will be rigid plastic things with a small hinge at the ankle to allow for articulation, an ankle velcro strap as well as the one around the calf (held on by brads, not Gorilla Glue that comes apart after two wearings), and padding around the foot that overlaps almost like a sock. She made a fiberglass cast of the legs to use for a custom fit. I’m not at all sure how this is going to fit into a shoe but the orthotist promised that it would work. It will take about a month to get the new AFO’s made and I go back for a fitting in early March.

One big concern here is the cost, but obviously I will pay whatever I need to pay to get these; the original AFO’s don’t fit at all, and I can’t walk safely without them. Medicare will pay for one set every 5 years. We don’t know if the coding used for the “off the shelf” original set is the same that they use for this custom set. If it’s different, then Medicare will pay for them. If not, then I will get a bill for $1800 each, less 40%. That’s a nice savings but it’s still pretty darn pricey. Good thing I’m not planning any vacations anytime soon. Also it explains my stress levels and chocolate cravings.

I’m HOPING that when the new AFO’s get here, I’ll be able to put them on myself, but that’s what I thought before and it didn’t happen. On the other hand, you may remember that months ago I bought a weird device that was touted as helping you put your shoes on with AFO’s. It didn’t work because my set didn’t have velcro around the ankles, which seemed to be what made it possible. The new set will have that and I’m hoping that means my nifty device will work and let me put them on by myself.

What I really need is someone to put my shoes and AFO’s on for me and watch me walk in the hallway, following me with the wheelchair in case I need to rest (which I usually do). I’m not going to fall down, but I can’t go very far without a rest. And then I’d like the AFO’s to come off and just the shoes to go back on so I can go about the rest of my day with the wheelchair. At some point I’ll be able to do more walking and can keep the AFO’s on longer, but I’m not there. I’m not exactly sure where how I go about finding someone to do this for me most days, but have a plan to try.

Reading between the lines of my conversation with the orthotist today, I think an AFO will be part of my life for a long time, at least for the right foot which is still inflexible and feels spongey. I’m hoping the left one will spring back to where it was before, but there are no guarantees about that either. I wish I better understood what the surgeon thinks is likely as the final outcome of the laminectomy; all I do know is that it will take at least 12 months or more, and that I probably won’t get all my function back. Nerves heal very slowly and there will be some permanent damage from severely compressed nerves.

I just don’t know what it will look like in a year and that’s hard because I can’t plan and I like to plan. Do I want to walk instead of ride around in a chair? Of course. Where I am now is a far cry from where I was five months ago and in many ways, if this is where I finally end up, I can live with it because I’ll know those are the limits. I wasn’t sure that I’d be able to come home at all, to live independently, or care for my kitties, and I can do all of that. Is it enough? No. But I’m really worn down by having to fight so hard to figure out what I need and how to get it. And I’m tired, and I hurt today. Please send hugs.