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.

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

My Smartest Purchase This Year

I bought many things in the last year but my smartest purchase was my NuStep which I ordered just after Christmas. It was very expensive and felt like an indulgence. I was wrong; it’s been worth every penny. Why, you ask? Because my legs are significantly stronger, and stronger legs are what make it possible for me to stand up easily and to walk with a walker without falling.

I used the NuStep at my gym for at least a year before I went to the hospital last summer, so I was really glad to see and use it at my first rehab center last August. It wasn’t available at my second rehab facility, but we have one in my building up on the 4th floor exercise room. I just didn’t think it would be practical for me to always have to navigate there and hope no one else was using it.

When I ordered it, my original plan was to use it twice a day but that never happened because of shoes. I wear my cute zipper shoes without the AFO’s on the NuStep but need to change to my other shoes with AFO’s so I can walk. I’m making a wild guess that changing shoes is a lot harder for me than it is for you, but in any case, it takes time and energy and I hoard both as much as possible. It’s also often not very convenient to do several times a day.

I “do NuStep” (as a verb) 4-5 days a week for 30 minutes and am now on resistance level 5. I watch TV or read on my Kindle while I work out, often with a load of laundry in the wash. I can start a load, get on the machine and work out for 30 minutes, then move clothes from washer to dryer. That saves me from backtracking on thicker carpet, which hard for rolling the chair, so being able to piggyback projects makes me happy.

My legs are now wicked strong, or at least in comparison with last summer. The NuStep also works my upper body and I can usually feel it in my arms and across my back the next morning. Climbing on the machine is still a challenge. I use a leg lifter to move the left foot across the middle of the machine and to get the feet up on the pedals, and I wrap a gait belt around my thighs just above the knee to keep my right knee from flopping out while it’s working. Getting off is much easier and I can be back in my wheelchair within 3 minutes.

The machine itself is quiet, easy to set up, and easy to use. It was used, which helped keep the cost down, but in perfect condition. Ellie and Emma have accepted that it lives here even though it’s big and doesn’t offer them treats. Having it inside my apartment was another brilliant decision, if I do say so myself. I have no excuse for not using it because it’s always there and no one else is already on it when I’m ready to go. It’s much more practical for me than having a guest bed that’s never used.

If you have access to a NuStep at your gym, give it a whirl.

Venturing Out for Solo Walks

This week I ventured out and took walks out in the hall by myself, without a trailing wheelchair in case I needed to rest. This was a first here. I’ve been building up to it by walking around the apartment with a walker instead of the chair. Obvious differences were distance and turns; the hallway is straight and the apartment has me making circles around furniture and turns into doorways. But it was still good practice and the living room looks way bigger without the wheelchair sitting in the way.

My first trips took me from my chair out the door, then a turn and down the hall to the first apartment, then turning around and going back to the chair. Today I upped the effort and went past the apartment to the fire doors before turning around and going back. Not sure how many feet that is, but it’s getting closer to the whole distance I did before with a trailing chair. My legs and feet weren’t tired, but my arms were. Note to self: more arm exercises are in order. I won’t push my luck, though, and will aim to do what I did today twice tomorrow.

I also called and made an appointment for my Medicare Wellness Visit with my primary care doctor, as well as researched local dentists. I really need to get my teeth cleaned but was worried about how to handle the visit in the wheelchair. Friends in my Facebook group for spinal cord injury rehab gave me some good tips and I will call this coming week to make an appointment. Hmmm. I also need to make an appointment with the cardiologist for my annual visit.

What bothers – not worries, just bothers – me the most is the amount of edema I have in my right foot and leg all the way from toe to groin. The left has some, but the right is really excessive. I’m already taking prescription diuretics balanced by extra potassium, drinking water, adding as much movement as I can. I sleep with my feet elevated as far as my adjustable bed will let them go. And I try sitting with legs elevated rather than the chair with legs down where that’s an option. So I hope one of the doctors has a good suggestion.

I did something else for myself this week: new granite countertops for my kitchen. I loved my new granite at the house sooooo much and then left it to move here, where the kitchen was nice but dark. I have warm wood cabinets, black appliances, and dark floors. I came to really hate the black patterned granite that always looked as though someone scratched it. I was really lucky to update my counters with granite remnants from a local company that were expertly cut and installed. They look fabulous and really brighten up the kitchen, especially with my pops of red on the counters. I lived in white apartments for so long that I learned how to perk things up to suit me, and my bright red Kitchen Aid mixer is a big part of the decor as well as a kitchen tool.

The NuStep is Here!

My very own NuStep arrived yesterday! This is one expensive piece of exercise equipment – I’m pretending I’m going on two trips to Europe to pay for it – but it will be essential in strengthening my legs, which will make it much easier to walk. I used the NuStep in the gym in my “before” life, usually going for 30 minutes at a stretch because it was easy to use and felt so good. I used it again at the Olympic Center (Rehab #1) but Rehab #2 didn’t have one and I missed it so much. Now it’s here in my apartment and there is NO EXCUSE to not get on it twice a day and build up time while watching TV or reading.

Yes, it’s an indulgence. But it’s a smart one for my recovery. My physical therapists at Rehab #2 and now home health are excited and promise it will make a big difference with regular use. I know how to use it but had been a bit concerned about my ability to get on it in the first place. No worries, as long as I make sure I have a leg lifter handy. I need to work out the ideal position for the wheelchair to make the transfer to the seat easier – but since it took two people to get me up on it in Rehab #1, I’m excited that I could get on by myself. Progress!

When I moved here, I deliberately didn’t put a bed in my second bedroom. That space now has a Purpose and also is furnished with a bookcase with a small TV already hooked up to cable, and places for the cats to hang out to keep me company while I’m there. No excuses. It’s time to do this.