How much time does my disability take?

It was an absolutely beautiful day today, and it felt so good to be out and about in the warm sunshine! I got a lot of my TO DO list done, though (of course) not all of it. So, what’s not done will carry over to tomorrow. And despite my best intentions and cutting stuff off the list, I was too busy and I overdid it. My wrist is feeling sore, not acute pain, just sore.

I’ve never actually tried to calculate how much time my disability takes from me. The scientist in me does protest! There is no control here!! You need to get 100 people with disabilities, match them for age, gender, and general health with 100 people who technically don’t have disabilities. And even that wouldn’t be easy to call a fair control. If I hadn’t a disability, perhaps I might have had some sports injury from biking or running, and then I’d have as much time in PT or doctors’ offices for different reasons …

All the same, I can tally up how much time my disability took from me today, imagining my otherwise non-disabled and totally healthy self.

Using today as a typical day:

1 hour for a shower and dressing – I don’t blow dry my hair or use makeup. I believe my AB self could take a shower and dress in 30 min. So, 30 min extra.

Stretches 45 min – wouldn’t do these at all if I were AB!! At least not daily. Let’s use Jim’s exercise plan of 1 hr every other day, average 30 min daily. So that’s 15 min extra today.

3 destinations. Each time I get in and out of the car is an extra 5 min. It takes that long to get myself in, and load the chair into the chair topper. 3 destinations means 8 in or out transfers, plus 2 more at the car wash makes 10. Extra 50 min.

Doctor visit – 1½ hours extra. I’d add in transportation time too, except that I was headed that way anyway to Fashion Valley mall.

Pillow shopping (this has become a real nuisance for me, trying to find the right pillow to help keep the cervical vertigo away – I’m on pillow try number 4) – 15 min extra. I went to the mall anyway, so it was just time spent in Brookstone.

Car wash – can’t use the usual style car wash, where they put the car on a conveyor belt and hit it with soapy water and long flaps as it goes along. I have to have my car hand washed. The car wash place has had bad experiences when the long flaps have gotten caught on the chair topper, hurting their equipment, not hurting my car. Extra time 30 min, extra money too!

Last but not least, my bowel program in the evening – 1 ¼ hours. What is typical for most people – 15 min? 1 hr extra.

So, today if you add up all my extras -
30 + 15 + 50 + 90 + 15 + 30 + 60 = 4 hrs 50 min.

My disability is a part-time job!

Of course, not every day is like this one. Some are worse, when my wrist is hurting enough that it alone slows me down, even for the most common of activities. But that is not typical. Though a year ago, I would not have called today typical either.

If I look at my life in the last 5 years overall, most days my disability took less time actually. I usually shower every other day, and my bowel program is every other day. There are plenty of days when I am busy at home, and don’t have the transfer time – though if I do go out, I prefer to string my errands together like this. There used to be days when I’d go to 6 places in a day, but I limit myself to 3 now because the transfers are hard on my wrist. I’d say half my days are primarily at home, half have errands I head out for.

And of course I don’t go to doctors re: my disability every day! PT once a week, and maybe an average of 1 visit otherwise for something once a week too. Lately this has been higher because of specific issues, and the wheelchair purchase as well. To get a really accurate measure I’d have to measure my time everywhere I went for at least a month. Perhaps I will, but I’ll only put a summary on the blog. Perhaps not, it only takes more precious time from my day.

So, being honest, I’d say the real average time spent per day when I don’t have a time-limited medical condition, is closer to about half that at 2 – 2 ½ hours a day. All the same, I’d rather spend that 2 hours reading a book! And I do fear that as I get older, I’ll be spending more time with these short term overuse conditions. What I have today may become truly typical soon enough.

Maybe sometime I’ll try to calculate how much money my disability takes too! Today was about $115 ($30 copay for doctor, $70 for pillow, $15 extra for carwash).

A for the doctor’s thoughts about surgery – he is concerned, like I am, that recovery could be really tough. He’d rather I try some non-surgical solutions first, especially since the pain has not been steady and growing for the past year. I’ve had times that I’ve been pain free, and now it is not anything like its worst. He gave me some anti-inflammatory patches, same medicine as the cream I’d been using with good results. The benefit of the patch is that it will last longer, and not get rubbed off easily. Medication is really just palliative though.

He wants me to try galvanic stimulation (gave his personal machine to borrow for 2 weeks to see if I like it) and to get a brace that goes on top of my hand and thumb, versus the typical brace which is under the hand. And more than anything, he reminds me that it will heal with true rest, with time.

I just don’t think I’m ready for someone to cut into me. So, decision is being put off for another couple of weeks.