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.

daily planning

Today I do wonder about my commitment to write daily. I’m really tired and would like to go to bed. I can’t possibly write my best under these conditions! But in keeping with my goal of writing every day, I will keep on. If nothing else, these are good notes for the future.

The good news is that our electrical upgrade project is totally finished as of today. The handyman came and finished the patches on the walls (6 altogether) and did one other task for us. The electrician came and replaced the defective outlet outside, and the switch inside that got broken. I can tell where the spots were patched, but no one else will notice. It took 6 full weeks, and it’s almost hard to believe it’s done!

That took the whole morning. This afternoon I had a dental appointment, a stop at the library, and then half a dozen chores at home. Each week I try to touch base with my mother and 2 mother-in-laws. Today I called 2 of the 3 older ladies. I also emailed 2 places about wheelchair parts for my chair. If my insurance doesn’t pay for the front wheels I like, or the brakes I want, I will go after market for them. It’s been complicated to sort out what the true prices of these items are, and the best way to get them. And I did my daily stretches.

At that point it was time to cook dinner. Today I was cooking a large pot of chili, so that I’d have the leftovers next week when my sister, Johanna, and her daughter, Lizzie, come to visit. I am so excited about their visit! It’s been about 3 years I think since I last saw them both, not counting the short visit in Huntsville 2 years ago when my mother was in the hospital. I went to Huntsville first, to be there before, during, and right after surgery – that’s when I’m most helpful. I can deal with doctors and make sure my mom is properly cared for. I stayed at a motel near the hospital. Johanna arrived the day Mom was able to go home, and we were both there one night. Johanna was better able to help her at home than me, giving her physical support when Mom felt weak, and able to drive her car out for supplies as needed. By my going early, Johanna didn’t have to take as much time off from work. We were a good team, I thought.

But that hardly counts as a visit! Next week will be a whirlwind of activity, as life with an 8 year old always is. They will go to Sea World, Balboa Park and the Natural History museum for the whales IMAX, The Scripps Aquarium, to see the La Jolla seals, the zoo. Get the theme here? Lizzie is really into sea life and animals. I may not go along with quite all of these outings, but will do most of them. They are all accessible, with the exception of a few trails at the zoo.

Anyway, at this moment I’m tired. I sometimes wonder if my threshold for how much activity I can take is lower than non-disabled people, or am I just getting older? If I compare my energy level now with my own life 20 years ago, I have a lot less energy! And how much of that is being 30 pounds heavier? So hard to sort out this stuff.

Tomorrow I see the rehab doc. I stopped using the anti-inflammatory last week, and yesterday my wrist started acting up, so I hope that will give him a good idea of what my problem is. Could this be part of why I’m feeling so tired?

Wednesday’s TO DO list:

Up by 9

Shower and dress – 1 hour

Cat chores (boxes etc), breakfast & dishes, read email & paper – 45 min

Stretches – 45 min

Call for info about Greece cruise in Oct 2011 – 20 min

Figure out property tax appeal form for 2010 taxes – 20 min

Leave house at 12:10

1 PM appt with doctor – till 2:30 likely

3 – 4 Fashion Valley – shop for new pillow, birthday card and gift

4:30 – 5:30 car wash and call my mom

6 PM home

dinner prep – 1 hour

pay bills? – 1 hour

dinner around 8

Write in blog after dinner – as much time as I can!

It’s a full life!

Stomach trouble

Not feeling great this evening. I don’t know yet whether this is just an IBS (irritable bowel syndrome) episode or if it’s something worse. Jim isn’t sick, so I doubt it’s food poisoning or food gone bad. We had some pre-prepared stuff from Whole Foods, which usually is safe – but any pre-prepared food comes with risks. Perhaps there was too much oil in the food prep? I can’t tell now. I’ve taken some meds to quiet any cramping, and have only had one run to the bathroom. Time will tell. If I have another run soon, and it’s watery – then I’m sick. If there’s another run in an hour or two, more likely IBS. And if I start to feel nausea and not just gassy, that’s more likely a flu.

It wasn’t my intention to write about gastrointestinal problems today, but I’ll seize the moment.

It is very hard when you don’t have full sensation inside your body, to sort out symptoms and know what the problem is. Full bowels, full bladder, stomach cramps, menstrual cramps, gassiness, and bladder infections can all feel about the same. It takes years of paying attention to your body, increasing your body awareness and even then it’s hard to tell the difference at first.

Generally when something isn’t right in my lower body, creating a condition that would be uncomfortable or even painful for someone with full sensation, I get a condition called autonomic dysreflexia. When the pain signal doesn’t go up the spinal cord properly, a back up system kicks in – and makes your blood pressure rise, and usually gives you a headache and a slightly sweaty clammy feeling right at your injury level. When the dysflexia is really bad, like while I was in labor, the headache is severe and you feel like your eyes are going to bug out. Thankfully, usually, it is mild.

So, to solve the mystery of what isn’t right, I evaluate my sense of what my blood pressure is, whether my stomach feels cramped, whether I’m gassy, or have a fever (rare). Today my bp rise is very low, I feel gassy, and the crampy feeling had been coming in waves every 20 minutes or so – conclusion is bowel trouble. Bladder infections are slightly higher bp, more sweaty, and the crampyness is more constant. Fever only comes if the infection is really bad. Menstrual cramps, which I no longer have (knock on wood!) are more like bladder infections, without the fever, though I used to feel like I was getting sick with a flu, not hungry or interested in food.

The last time I had really bad dysreflexia was when I was very constipated from a day of flying, about 3 years ago. I imagine my hemorrhoids were really hurting, and it took 3 days to subside, though was only severe during bowel movements, not all day. My blood pressure was so high I debated going to a hospital because there is a risk of a stroke when it is that high, but I was in Huntsville alone staying at a hotel, while my mother was in the hospital recovering from surgery. Many emergency room doctors don’t know what autonomic dysreflexia is (I kid you not!) and I chose instead to keep my eye on it. There is a medication we can take that will lower the bp immediately, but stupidly I had left mine in San Diego. Never again will I travel without it. Luckily, like most paras, I have low blood pressure normally – 90/60 or 100/70 most of the time. It used to be lower when I was younger, prompting doctors to ask me if I was ok, and did I need to lie down. So, even if my bp shoots up, it is rarely high enough to cause me to worry about a stroke.

The easiest way for us to manage our bowels is to create a schedule with a regular frequency (once a day or every other day are most frequent) and then with one method or another, to stimulate the bowels to empty. If you eat foods at a consistent level, you can do this. It’s not that hard, but takes time to learn what your body can handle. How much corn or cherries or prunes can you eat?

I imagine that every SCI at some point has had bowel accidents from poor food control and when sick. They are NOT fun. You just don’t have the sphincter control to hold stuff IN. And of course these moments like to come when there’s no accessible bathroom at hand. I could tell some really gross out stories, but won’t – as much to spare myself the memories as to keep my audience! My worst days were about 10 years ago. I think I was starting to have IBS then, but didn’t realize it. I knew I was getting more sensitive to foods I was eating, but thought I had just stretched the rules I had set for myself. With time I’ve learned that the foods that trigger me most are animal fats and high roughage foods. I’m particularly careful with fast food, and only eat it when I’m heading home, and to a perfect bathroom. Spicy oily foods are a problem, like Thai and Indian, but I like them, so I just watch what I eat. And once in a while very hot soup triggers a reaction too. I suspect I have diverticulosis too, so I’m staying away from nuts and corn, at least a lot of them at any one time. A little is ok.

Anyone could have IBS and many people do. I bet a lot have it at a mild level, and don’t really know it, they just know that after eating they always head to the bathroom. I’ve noticed someone who often gets up in the middle of a meal to use the bathroom, and think this is unusual. But for someone who can get to a bathroom almost anywhere, quickly, it’s not a real issue. Or if someone can hold-it-in, albeit uncomfortably, for the time it takes to get to a bathroom, they’ll be ok.

About 5 years ago, I had jury duty, and my biggest worry that week was that I’d have a bathroom problem. I had just started to get a handle on my IBS, and take medication. I could easily have gotten a medical excuse, but I really wanted to do jury duty, because I never had before. For that whole week, I didn’t eat lunch. I couldn’t afford to have an IBS episode after eating lunch. The accessible bathrooms were a 15-minute walk from our courtroom (regular bathrooms were about 2 minutes away), and when I feel an urgent call to go I only have about a 10 minute warning. Plus you can’t just up and excuse yourself out of a courtroom any time you want to. So, to be on the safe side, I didn’t eat anything except fruit till I got home. And I was fine. A week of weird eating won’t hurt you. I was glad to do jury duty once, but not likely to do it again.

Now, about an hour after getting out of the bathroom, I can feel the cramping dying down. The medicine is probably relaxing those tissues, so it’s most likely IBS triggered by something in my dinner. I’ll be ok by the time I go to bed, and it’ll be forgotten by morning.