Everything Takes More Planning

Almost everything I do now takes more planning than it did before, more awareness of the steps to make it happen and of the way space does or does not accommodate doing it at all. I say this not to whine or complain, just noticing how things have changed for me.

I never paid that much attention to how physically disabled people navigated their world. Oh, sometimes I’d notice Braille dots on signs or would see the blue signs with little white wheelchairs for special parking that seemed to be ignored by many in parking lots anyway. Bathrooms had maybe one stall larger than the others, usually with a broken latch or without toilet paper. Restaurants and stores had everything very close together and I never thought how someone in a wheelchair, or on crutches, or using a walker would get around.

But I notice that stuff now. And before I do anything or go anywhere away from home, I have to plan it out – and some things just don’t happen because they’re not feasible.

My complex is very conscious of mobility issues and the need to accommodate them, yet the doors to the public bathrooms and the trash areas don’t stay open when we use them. And the threshold to the main door is hard to manage on my own; I need someone to give me a push to help me get through.

When I go out to an appointment, I wonder if I can use the bathroom. Is there a special larger bathroom or stall with grab bars? How tall is the toilet? Will I be able to stand up by myself if I use it? The one at home is very tall and I have lots of bars to help me stand. Last week at the doctor, I had major trouble figuring out how to get up. So the alternative is to stop drinking and don’t take diuretics several hours before leaving home so I don’t NEED to use the bathroom at all.

The only store I’ve been to since August is a fancy grocery store near my complex, with wide aisles and helpful staff. But I think about places I used to shop regularly and know that I couldn’t manage them now; aisles are too narrow and cluttered to accommodate a chair and even someone using a walker would have difficulties. I don’t have to be able to go everywhere, but I do need to know what I can and can’t do.

I’m also very aware that people using mobility aids are slower and need more assistance – and that other people around them are impatient and in a hurry. We hate to cause traffic jams and be in the way but we really don’t have a choice, and we need you to be patient with us. And if we tell you we don’t want to go out somewhere, know that we have good reasons to be wary. We need to know how it will work, and that we can be part of the outing while not causing problems for you.

And you need to be planning, too. Do you know how you would get up from a fall, especially if you live alone? Have you thought about getting one of those Med-Alert systems? Do you have a cane or a walker in a closet or know where you can get one on short notice? Do you know if your doorways are wide enough for a walker to get through? Do you have grab bars up in your bathroom? Think about it.

Image credit: Photo 135922392 © Grejak | Dreamstime.com

Small Meltdown Over Shoes

I hate that it’s so damned hard to just put on my shoes. And that they are so ugly.

I loved to go barefoot in my house and to wear my beloved Birkenstock thong sandals year round. My toes don’t get cold, the arch is supported, and my feet can breathe. They are very wide, too wide to easily fit in local shoe stores, so I’ve bought shoes online for years. I had a good pair of New Balance athletic shoes in a men’s 8.5 4E that I wore to the gym, with soft flexible fabric that accommodated the occasionally swollen feet.

Alas, those days are no more. No more bare feet, no more Birkenstocks. No more cute shoes. Just expensive orthopedic shoes for diabetics with padded ankles, soft fabric uppers, and velcro straps. They’re ugly and I feel like an old lady wearing them. I’m too young to need old lady shoes! Except I’m not.

So I keep buying super wide shoes that should fit only to find that they actually don’t fit very well, or they fit one foot but not the other. That’s even without the AFO’s – and the new ones are going to be harder than the ones I have now, so I don’t want to spend pots more money buying shoes that should fit with AFO’s before they’re actually here, because if they don’t work, I still need to send them back. Which isn’t easy to do anyway when you don’t drive or have easy access to a car.

The OT spent her time with me today playing shoe store, pulling things out of the closet and then trying them out to see which ones I can get on by myself and how we make that happen. It wasn’t pretty and there was crying involved, but I finally did get two different ones on after about 15 min of trying for each one. The ones I have on now are black and ugly but they more or less fit, though they are two different sizes.

It could be worse; at least I have feet that I can cover with shoes. And if I have to, I can hire someone to put them on for me. In the scheme of things, shoes are a small thing. But I’m still waiting for insurance to approve wheelchair and AFO’s so something small becomes big because I can wrap my head around it even if I can’t always get the shoes on.

Image credit: Photo 47266077 / Big Feet © Yong hian Lim | Dreamstime.com

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.

Feeling a Difference

My body is sore this morning in a good way. My back is particularly sore which makes me happy because it means the upper body part of the NuStep workout is working and involving lots more muscles than I remembered. My quads are tight and hip flexors are a bit cranky, but that’s okay – I expected that. And it feels like I’m actually DOING something productive and healthy, because I am.

Yesterday I asked the physical therapist to watch me get on and off the machine to see if she spotted any ways to improve the process, and with only a few small tweaks, I’ve got it figured out. The plan is to work for 25-30 minutes once a day, gradually increasing resistance levels. Once I get that into a routine, I’ll try adding a second session so I’m doing one in the morning and one in the afternoon, starting with 20 minutes each time and building up. But no matter what, just getting on and off the machine is a workout.

So I’m feeling virtuous as well as sore.

First Solo Shower

I’m clean! I’m clean! Today I took my first solo shower in five months and it was WONDERFUL! I’d practiced with occupational therapy, figuring out where towels needed to be, and how to manage the actual washing, and standing up. That was a kind of risky part, but it worked and the legs stayed steady. What we hadn’t quite planned was that I would need three towels for this project – one for the wheelchair, one to dry off with, and one to mop up the water that got on the floor. To keep that from happening, I think I need to get a new shower curtain liner, and to rethink where the towels during the shower itself. No reason why they couldn’t get piled into the wheelchair instead of threaded through the grab bar. I’ll try that next time. Maybe tomorrow?