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.

Just living my life now

I recently read over all of my blog posts from the first when I was in Rehab #1 in August 2021 to the latest, covering progress, setbacks, pain, challenges, emotions, and regained skills. Wow, lots of words covering all sorts of mental states and physical change. Thanks for hanging in there with me as I babbled my way through. I’m putting all of those words in a format to produce two bound volumes as a way to track my “recovery time” of August 2021-December 2022. It’s how I marked the timeframe I’d be mostly like to get back my mobility.

Mostly now I don’t think about it; I’m just living my life. I’m in the wheelchair most of the time but am planning to get a power chair so I can travel down to the front of the building more often to be part of various activities. I just can’t roll down with the manual chair more than once a day or my arms want to fall off. My arms are strong but could be stronger; I need to work on that, but today am dealing with arm soreness from my neck and shoulder down to my wrist. Using a manual chair puts a lot of strain on the shoulders and arms. Even walking does for me.

I haven’t done as much walking lately as I should be doing, and it really doesn’t bother me. I know it should. First it was my ingrown toenail that cause sharp pain with every step. Now it’s the place on my back/side that I hit on the arm of the wheelchair when I fell in the kitchen 2 weeks ago. Not on the floor, thank God, but even just falling into the chair left me with pain and soreness that hurts from the shoulder to the hip. It’s better by the end of the day but in the evening and again when I wake up in the morning, moving is painful. Well, just breathing is, to be honest.

My health aide now gives me regular massages, either full body or back/shoulders/feet. Oh my, it feels soooooo good to have those stress knots released, and I have so many of them! Living alone through Covid concerns has meant no hugs and little physical contact, which takes a toll. I have the cats but they’re not really cuddlers, much as I want them to be. I’ve been touch deprived except in a clinical sense and very much appreciate these massage visits.

Christmas decorations are mostly up except for my tree, and I’m debating on that. Right now the place where I would put it is blocked by my old lift chair that’s waiting to go to a new home. Last year the tree was in my bedroom but that doesn’t work now because I have a chair there that I need to keep to put on the AFO’s. But directly in my line of sight is a super cute table top wire tree that I got at a consignment shop, waiting for its small ornaments. Maybe this would be enough for me this year. I need to put the ornaments on – after getting the box out, which is a task in itself – and then we’ll see. I have stockings for Ellie and Emma, a basket full of elves, two nutcrackers that were my father’s, an angel made from my mom’s wedding dress, flameless candles and pretty ornaments in lanterns, and two nativities. Not to mention the Christmas Pillows which mostly have gnomes on them. I have a thing for gnomes 🙂

Through this blog I’ve met two people who found posts that linked to their families. Come 2023 I want to write more family history oriented posts instead of all of these “today I walked X feet” posts. It’s been necessary and important but I’m ready for something else. Go me.

One Year Out of Rehab

I’ve been out of residential rehab for a year this week and am so happy to be home, living my life as independently as I can (which is most things). I’ve learned how to adapt to things that seemed impossible when I first got home, and others may be time consuming but very doable. They seem like small things – taking a shower, changing the sheets, putting on AFO’s, making cookies – but each was a major challenge. But I live here independently with my floofy girls and do more than just worry about whether I can stand. I have two more weeks of PT working on my inflammed shoulder and then I’m on my own again. I’m so ready.

Walking:

For the last 2 weeks, I’ve been walking with a rollator in physical therapy. Right now it lives up in PT so I’m using my regular walker at home and to my surprise, I’m finding the rollator to be easier to use. When I tried using it a year ago before I was discharged from rehab, it was a disaster. My legs are much stronger now and my rollator is appropriately sized, so I feel stable. I also know how to use the brakes to keep the rollator from flying away from my feet. I’m easily walking about 150 feet using it which may not sound like much but it means I know I can handle it in the apartment with shorter distances and I feel confident about bringing it home to use on my own. If I need to, I can hire someone to walk with me for 30 min a day when I first start using it here.

Sleep:

My sleep has finally turned around. I’m making myself stay up longer in the evening, which seems to have eliminated my “get up in the middle of the night to pee” problem. I use my nifty flexible “bed ladder” attached to the bed frame to roll over so I can sleep on my side, which eases lower back pain. I usually find myself on my back by morning, but have figured out how to set the adjustable Sleep Number bed to be comfortable and supportive. And best of all, my CPAP problems were fixed by adjustments made by my DME provider so I’m getting plenty of air. After months of short nights mostly spent in the chair, I’m now getting 8 hours of sleep and have plenty of energy during the day.

Blood Clot:

Two ultrasounds in early July found a blood clot in my right thigh. It’s a chronic thrombus or DVT which means it’s been there a while and has hardened and attached itself to the femoral vein from above the knee almost to the groin. Yup, it’s big. They did the ultrasound in the first place because my leg and foot were swollen and super tight. The doctor explained that, because of the clot, the blood couldn’t get up the leg through the narrowed vein. What made it swollen wasn’t water retention, it was blood. They put me on blood thinners to dissolve the clot, though it could take 6 months for it to go away completely.

Three months later, things have improved. Two follow-up ultrasounds show the clot is still there, but my foot looks normal in the morning and only slightly swollen at the end of the day. Foot and leg are more swollen if I have to spend lots of time in the wheelchair with my legs down, but even then, the leg “gives” more than it did three months ago and feels more normal. I elevate my legs in my lift chair when I’m home and also raise up the lower part of the bed at night, which all helps. Elevating didn’t really do much before and I’m not sure how much it’s necessary now, but I’m happy to have more normal legs.

Hopefully the whole clot will be gone by the end of the year. I’m thinking I’ll probably need to stay on the blood thinner to be sure another clot doesn’t develop, but we’ll cross that bridge when we get there.

Image credit: Photo 155001899 / Progress © Designer491 | Dreamstime.com

More PT Ahead

My right shoulder has been killing me. Isn’t it odd that all of the aches and pains and sprains and tingling – even the blood clot – are happening on the right side? Very lopsided. In any case, the physical therapist was here this morning to do an assessment of the shoulder/arm in response to a PT order from my doctor. He also assessed the ankle; the order for that came through when I sprained it, but was postponed when they found the blood clot. It’s been unstable so it got assessed and I get more PT.

There seems to be a nerve impingement as well as super tight muscles. Right side testing was considerably shortened from the normal left side, so PT will help. I got three stretching exercises to do in the morning and will go to PT twice a week for some indefinite time, because we’re also going to add in some work with the legs and walking. Chris was impressed with how much walking I’m doing on my own, so that feels good and as though I’m not slacking off somewhere. Pain needs to be heeded, and pushing the shoulder pain could result in other problems for me.

Also got instructions on how to shrink my giant abdominal hematomas and clarification of why I’m not to wear AFO’s on the NuStep. Wearing them supports the ankle but it can disguise any rubbing of the foot in the brace/shoe that could cause more problems. No one explained that before, or at least I don’t remember it, just that they didn’t want me wearing AFO’s on the machine. Got it. I think I need to reverse my shoe plans so the AFO’s go on first whether I think I’m walking or not, since they support the ankle. Mid-afternoon I’ll take them off and put on the zipper shoes to do the NuStep. Or not, if it’s not a NuStep day. I’ve been doing that backwards and I’m more likely to make myself go walking if the AFO’s are already on.

I’m not reluctant to walk. The problem is the cats, who want to go out in the hall with me when I go. I’m slower than someone not using a walker (or wheelchair), and they could easily get past me into the hall. So I try to plan my walks when they are flaked out asleep on the porch or in their boxes or other sleeping places. If they don’t cooperate, it makes things harder, and that’s when I wait and sometimes the walk just doesn’t happen. Life is like that.

It’s Been Quite a Year

I never dreamed of a year like this one when I was planning for retirement. I left Yale Law Library in October 2015 and within a week, left for Texas. Not long after I got here, I found myself redesigning the community church website and then working there for five years. Last August I left that job when I realized I needed all my time to concentrate on learning to walk and live independently. I was right that it would be a full time job, but it’s certainly not what I expected to be doing when I wasn’t getting a paycheck.

I had spine surgery a year ago today that arrested the severe spinal stenosis, but it didn’t reverse the damage that had been done. I was very scared of what the future would look like when I was in rehab and not able to even stand up or go to the bathroom without two people helping me. I didn’t think I would be able to go back to my brand new apartment or take care of my beautiful floofy kitties that I loved so much. I didn’t see any light in the tunnel at all much less a way to get out of the tunnel to something beyond that.

I learned that I need to do what I can for myself but also recognize when I need help and ask for it – and then accept the help that is offered. I’m stubborn and independent and am used to living on my own, without anyone to depend on to help with things around the house. I’m still alone but there are people right out my door who will come if I ask, who will notice if I don’t show up for things. There are sweet friends who took care of my kitties when I was gone for so very long. That I can hire people to help me with personal care but also therapists who can teach me how to do some of those things for myself. The day I was able to do a shower on my own was a great day indeed even if it took me an hour.

And I learned that I wasn’t limited to hoping I could stand up. I can walk again, thanks to my wonderful physical therapists Veronica and Grace. Oh, I’m still using a regular walker with its cheetah print tennis balls but have a bright red rollator ready when I have the balance and strength to work on using it. It should be an enormous help since I’ll have a place to carry things from place to place (which is hard to do in a wheelchair) as well as sit when I need a rest. I can walk about 3/4 of my hallway and back again without stopping, and am working up to doing the entire hallway soon.

But the reality is that I probably will not be able to ditch the wheelchair or walker. There is a lot of nerve damage from the stenosis that won’t reverse. I’m not as worried about it as other people seem to be, probably because I’ve been in the chair for a year now and know what I can do. Caring for the cats – food, water, litter, cleaning up vomit – is best done while seated, and while I might be able to do that with a rollator, I know I can do it from the chair. I love them dearly and need to be sure they’re not shortchanged by my limits.

I’m so grateful for my friends here at Meadow Lake and for its accessibility and spaciousness. I couldn’t have dreamed up a better place to be with my physical limits. And I’m especially thankful for the friends I visit with online and by phone if not in person, who keep me connected, interested, and engaged. You are my tribe and I love you.