I Bit the Bullet

And ordered a NuStep for my apartment, along with a rubber mat to go under it, extended warranty, and white glove shipping to get it set up and working once it arrives. It’s a certified pre-owned unit that I should be able to use as soon as it gets here, after we make sure I can safely get on and off. I know that I can get on and off – I used this for my three weeks in therapy at the Olympic Center when I was just starting this adventure – but I haven’t used one for four months. I promise I won’t try to do it without someone here to help me. Once I get that part figured out, I will definitely use it. Partly because it’s wicked expensive, too expensive to just let it sit and collect dust. But mostly because I really need to get stronger.

I’ve lost strength in my legs these last few weeks. When home health PT was here yesterday, I had problems walking even a short distance because I didn’t trust my legs to hold me when I stepped out. My right foot feels like a sponge on the bottom, which, to be fair, isn’t a new feeling. But not trusting it to hold me feels new. The left thigh/back nerve pain is much less severe, which is great, but the leg just feels weak. So I need to work harder to get back the strength I had and worked so hard for months to get in the first place. I have standing leg exercises to do at the sink, which I used to be able to do lots at a time and am now down to doing only five at a time. But I can still do them. And seated ones. PT comes again tomorrow so I’d better get my act together.

It will also help that I finally have an appointment to see a “foot guy” next week and can advocate for a new, better AFO for the right foot. I can’t believe that after four months, I still can’t put on my shoes with the brace by myself, and without it, I can’t walk using the walker because I’m too great a fall risk. So I have high hopes for this visit and hope the doctor doesn’t disappoint.

I confess that I’ve gotten really used to using the wheelchair. I don’t WANT to be dependent on it, but it’s been necessary since I can’t do the shoes myself and most days that means no walking. It’s depressing to rely on it. Some things are easier, such as feeding the cats, but it’s hard to carry things while also using hands to wheel myself around. Everything is at a different eye level, which is great when in the grocery store and looking at the gelato counter but not so good for other things. What makes it bearable is that I still can stop and lock the chair, stand up, and do something like take down a mug or bowl. I’m not stuck in the chair with the limits that come with that. But I want to not be in it at all, and that will take a lot more work.

And I’m tired of working. I want a vacation from it, but that’s not possible. Because if you let up, you lose ground. I want to just crawl in bed, pull covers over my head, and burrow in. But I’ve been sleeping in a chair for the last week when climbing into bed became too excruciatingly painful. I’m hopeful that will change in the next few days coz I miss my bed!

A day in the life

Today I came very close to falling for the first time in a very long time and it scared the heck out of me. My therapist and I discussed it later and I have strict instructions to take things more slowly, to be more careful about standing and getting my bearings before starting to walk. I stand up a lot but haven’t been doing a lot of moving while standing up because I didn’t have shoes on and I know that’s not safe. But I can and do stand to go pee, to brush my teeth, wash dishes, take pills, etc. But really walking has taken a step backwards for the time being. Now that I can get shoes on five days a week, that should change.

One thing I forgot about wearing shoes every day is dealing with the damned AFO’s. In a few short days I’d managed to mostly forget about how the velcro strap on the left AFO keeps coming off and falling down my foot. And how the right AFO slides under the ball of the big toe, pressing on a tender arthritis spot. And of course how much I just generally hate them. On the other hand, they do steady my feet and keep the toes from dragging. I’m hoping the left one will not be needed nearly as long as the right one, though I’m not completely sure how I’ll know when that time actually is. Therapy says to ask the doctor; I suspect he will say to ask therapy.

I see the spine surgeon at the end of next week, three months out from my surgery date. I know he said to expect it to take 8-12 months to see how much functionality comes back, and also that it probably won’t be everything. The not knowing is the hard part. But when I look back at how far I’ve come in these three months, I’m pretty proud of myself. It’s not all steps forward – and to be really honest, if I end up in a wheelchair for most of the rest of my life, I know that I can handle it. I don’t WANT it, and will work hard to regain as much as I can, but it’s important for me to know that this Very Hard Thing didn’t break me.

Today I spent an hour doing Chair Yoga with about 10 other ladies and found the stretching and poses to be mostly doable, with some adjustments for being in the wheelchair. Our teacher talked with me after class and told me that she will do some additional research on movements for wheelchair-bound folks to find something else for me, too. There are also seated Tai Chi classes twice a week that I look forward to attending, as well as some general stretching classes that can be done seated or standing. I came back from therapy in time for Margarita Monday and a chance to be social with some people I know and met others for the first time. It’s starting to feel like my community now, and I’m settling in just fine.

Measuring Progress

Today was a very quiet day and I did almost nothing except for a few wheelchair rides and a walk around the neighborhood. My feet are swollen and puffy, and wearing the evil AFO’s with the velcro straps around the calves make the lower legs unhappy, too. So I’m using a down day from therapy to sit in bed with shoes off and legs raised.

I went back through my therapy notes today to see what I was able to do when in my recovery. Things seemed to move really fast when I started therapy, even though at the time it felt like the mountain was impossible to climb. But because I was in such rough shape then, it was easier to see progress than it is now, when it seems that I just do the same things all the time.

Standing: August 21st, stood up for 90 seconds on the paralel bars with two people holding me up. Sept. 3rd, stood at the bars and let go of one hand at a time. Standing endurance of 8 minutes. No longer counting to three to stand up, just “nose over toes.” Now: Standing is easy as long as the chair isn’t too low.

Walking: August 23rd, walked 10 feet on the bars with two people holding me up. Sept. 7th, walked 100 feet without stopping, without people holding me. Sept. 13th, released to walk 75-80 feet on my own in my “pod” at Meadow Lake. Now: Routinely walking 175 feet to therapy. Starting to practice with a rollator.

Transfers: August 17th, mostly picked up and moved by two people. Spent a week in therapy learning to use the wooden transfer board; gradually able to use it with just one person. Stopped using it by Sept. 3rd; doing walker transfer instead. Sept. 10th – first day to lift legs in and out of bed. Now: Do multiple times a day; able to pull covers up.

Toileting: August 17th, put on Depends or diapers. Used bedside commode with two people transferring me. Four days later, began transferring with wooden board and two people. August 31st, made first transfer to bathroom commode using walker. Sept. 15th, released to use bathroom on my own (with shoes on). Now: Released to use on my own even without shoes. Still needing help with cleaning, but doing better.

Dressing: August 18th, got my reacher and sock aids and learned how to use them to get dressed, a skill set that took time. Sept. 4th, able to stand up with walker and use one hand to pull up clothes. Now: getting fully dressed on my own – except for the shoes. They are still a mystery.

I’ve reached most of my personal goals for going home, but shoes are still a problem. So is cleaning up sometimes in the bathroom, though I’m working on that one. I need the OT folks to come up with a way for me to get those shoes on; the new assist device that looked so promising is very hard for ME because of angles? deadness of the foot? Not sure but it’s a problem. Instead of working on random arm exercises, I want some practical help.

Another Day, More Therapy

Let me start by following up on a few things from yesterday that generated a fair amount of comment. First, the wound on the back. I saw the Director of Nursing this morning and asked if he had heard back from my surgeon about the photo of the wound that I knew had been sent. The doctor was apparently not worried about what he saw, confirmed my next visit as being Sept. 22nd (next week), and asked that the wound be dressed daily. The dressing was changed this morning and was, in fact, placed better to provide protection from gait belts. The rest of the incision is healing beautifully and doesn’t need to be covered. Rest assured that I will stay on top of this.

Second, aides helping me dress but doing too much themselves. This morning’s aide is one I know and who knows what I’m trying to do for myself, and she let me do what I could before asking for help. I talked with the OT this afternoon about the best way to approach this with other aides, and she confirmed that simply saying that “I know I need help but I also want to see how much I can do for myself first” was the way to go. I like to know everyone’s name and to chat with them through their time with me – I don’t take them and their valuable help for granted, and I always thank all of them for whatever help they provide. I do not want to be THAT PATIENT that no one wants to see when the bell goes off. But I also know that I need to stand up for what I want and need because I want to go home. As I add new life skills, I will be clear in conveying what they are and what I need to be working on so they become ingrained.

One of my therapy friends went home today, an 87 year old woman recovering from knee replacement surgery. She’s done very well in her therapy and recovery, and was a delight to talk to at meals. I’m very proud of her progress and the grace with which she faced her challenges. Another man on my hall also left today but he was going to a nursing home, which he doesn’t want to do. My next door neighbor had a stroke in July and has been here a month; she’s not ready to go anywhere yet. And there are a few others. Most of us take our meals together, though not all and not all the time. By dinner time, many of us are just really tired. But today I’m heading out to see what’s for dinner – it’s usually a mystery even though we had the chance to select our meals, we’ve forgotten by the time the food shows up. It’s never actually that good.

PT this morning started again with a walk from my room to therapy, which is 175 feet. I had one short stop on the way after 75 feet. Once in the therapy room, we started at the bar by doing standing leg exercises. To my surprise, they were actually easier to do today than yesterday, though don’t get me wrong, these muscles still need a lot of help. It’s easier to do the leg lifts and kicks and even marches while standing instead of in the chair. Have I mentioned that I’m not in love with being in the chair? After these exercises, I did 15 minutes on the stationary bike, doing some little pattern with a goal of keeping a car in the middle of a lane by pressing evenly with both feet. Press too hard with the right, and the car goes into the right lane; the same if you press too hard with the left. It’s still boring but it’s less boring than doing the arm bike (which I did in the afternoon) with nothing to look at. Oh, and I almost forgot already that I walked another 100 feet at the end of therapy. Couldn’t make it the whole way, but It’s still progress.

OT started right after lunch with the arm bike (see above) and then scooting myself around the mat from one side to the other and back again. This should be easier than it was, but my pants kept getting twisted up. And going around the corners was very hard. Note to self: try not to scoot around corners on your butt. After that we did a fun exercise with a big orange ball and a 3 lb weighted stick, with the therapist tossing it to me and me hitting it back to her using the stick. I thought it was just hand-eye coordination and arm work, but apparently it’s also working unsupported back, and trunk flexibility and some other stuff I’ve already forgotten. It was more fun than scooting, I’ll tell you that. We finished up with standing at the bar and putting little rings on posts on different sides, then putting them back, followed by a similar exercise where I had to shift my weight and side step to reach the place to put the little rings. I noticed that my left leg was picking up but the right leg was just sort of dragging, so I made more of an effort to actually STEP and not just slide it. More work but necessary. Yayyy me for noticing it.

I had a visitor this afternoon and we got caught up in general and also spent some time going over questions she had from covering part of my church job while the position is vacant. I feel a tad guilty about resigning with no notice; I don’t think I had a choice, but I’ve never done that in a job before. So since many of the tasks are things that I started, or at least in their present format, I’m happy to help someone else figure out how to do them. I never want any job to be gutted because one person is missing; very few people are irreplaceable. I know I’m not, but I never planned to leave without an exit plan to help someone new pick up the tasks.

Oh, one more thing – I saw the head of maintenance from the building I live in, and asked about the status of the porch screen and the glass shower door. The porch screen is in process (they had to wait for materials) and the other had submitted a quote but no commitment had been made. So I had a chance to kill that shower door before it got started. When I asked for the shower to be glassed in, I was walking. Now I’m in a chair and headed for walker. What I need is a roll in shower, which I already have. No glass door will make bathing a lot easier for me. So relieved I was able to stop that without incurring any funds!

Quiet Sunday with OT

I lolled around this morning and had breakfast in bed (because I didn’t get up at 7:30), really loving the chance to just curl up under the covers for a few more minutes and elevate those feet that have blown up like water balloons. I’ve been spending too much time in the chair with my legs down, and my feet are showing what that looks like. It isn’t pretty.

I was surprised by two things today – first, a visit from two Emerald Bay friends who popped by, and then by an hour of OT which I hadn’t expected. All of the women from my Cypress “neighorhood” were there working on various upper body things. I spent 15 minutes on the arm bike and 12 minutes on the stationary bike, followed by a bunch of arm exercises using a weighted stick. Let me tell you, even a 2 lb stick gets heavy after you do three sets of 20 of something. Then I did 10 “sit to stand” exercises, and ended standing at the bars putting little plastic rings first right, then left, then putting them all back onto a stack – and doing it again, and yet again even farther out. Good practice and not too tiring.

The OT was nearby when I needed to get up to go pee, and she came to help. Instead of getting me out of bed, she handed me the leg lifter – and I got myself sitting on the edge of the bed for only the second time. She asked if I wanted to try walking to the bathroom with the walker, which I’ve been wanting to do but can only do with my shoes on when my legs are more stable. I knew I could do it, but I actually surprised her that I could handle it. And then I got back into bed by myself using the leg lifter. It’s easier to do when I’m seated and can see what I’m doing with the feet and legs. Still not easy, and still not sure how to manage getting covers on and off, but I have to be able to get in and out of bed by myself, so I was really happy to do both today. The OT told me that I’d impressed her today, which made me proud.

I know better than to get out of bed alone, but being able to get my legs off the bed and sit on the side is a huge step and one I plan to work on again tomorrow. And now I know I can ask to use the walker to go to the bathroom when I have my shoes on; when my feet are in the ugly green gripper socks, they’re like dead fish at the end of the leg so it’s not safe to try.