A Life in the Day

I'm sort of taking a week off of my medical duties. Except for the dentist, and some rx refills, and a prescription pickup three towns away, and a couple of medical appointments I need to make...

And, dealing with the day's current health issues. See, the reason I decided to approach this as a full-time job - which not all disabilities are - is because it has issues to address every single day, and those issues change all the time. For that reason, I can't make a standard, unchanging plan of action. It's always a series of decision trees, it's this complicated multi-branching adapting thing, and the day's decision tree course isn't often repeated.

So, lately, I've been remembering how to work with the Zanaflex muscle relaxers under time-pressure physical activity.

Hurricane cleanup, outside, is the task at hand. I have rescue plants I must plant before they die. The tree pollen is out in force, meaning I'll steadily get sicker and weaker until next December. I'll probably be mostly housebound in another few weeks, and may not come out again until May or June. That may only be for a few weeks, then weeds and grasses send me back inside until winter comes again. Every year the pollen patterns are somewhat different, but they follow a general path each season.

So I have things I really want to do, and only a short period of time to do them.

Working around crippling pain.

I'm steady on the Fentanyl patches, that's continuous, non-stop. But when I do the heavy labor I love to do, the work that keeps me happy and strong, it cranks the pain up way high.

I'm supposed to take a 4 mg Zanaflex 4 times a day. That's a lot. It makes me sleepy and dizzy. The doc said, Try taking 2 at night, and then breaking up the remaining 2 to use throughout the day.

That works. Now, as long as I'm not driving, I break the tab into halves or quarters. I don't take these crumbs until just before I do the labor. If I come inside for a break, and I'm spasming, I wait until just before I go outside again before I take the next crumb. This way, for whatever reason, I don't get sleepy from the med, and the pain relief works.

The other major issue of the day was my strange temperature sense. I believe this comes from the blister attacks, this "fever sickness." Working in the sun can trigger cold sores, so it surely could trigger the same germ if you have it from head to toe, right? And I've been getting pretty bad blood blisters in my mouth, which tells me it's really active right now. Blisters. Blister attack is under way. From the sun or not, it doesn't matter.

One of the odd effects is that I have no idea how hot it is. I can't take cold, for maybe four or five reasons. But only the fever sickness makes me insensitive to heat.

Today it was 85 out, and I barely broke a sweat. This, when I was hauling wheelbarrows full of compost and plants, and pruning the bejesus out of the glorybower, and digging up shoots from the ground... When I came inside, I didn't have the A/C on. All day. The thermostat went up to 90 degrees. But my hands and feet felt like ice.

The butter was almost melted in its container. The poor cat was so hot he was laying on the terrazzo floor to stay cool, instead of his nice comfy pillow or my office chair. Old bones don't like hard floors.

It didn't really matter much, as far as things to do, except I had to remember to drink a lot of fluids. I usually do that without thinking, going through at least a gallon a day, but when I'm insensitive to heat, I don't feel the need. Even when I should.

I've never posted these details before because I actually just don't think about them much. My approach is to set up a sort of management plan - which does require thought and attention - and then, just follow those guidelines so I don't have to be thinking about it all the time. My health issues, unfortunately, bore me.

If they bore you too - sorry. Believe me, I leave almost all of it out.

Yet when I do, people don't understand why I do the things I do. Some poor misguided idiots think I'm goofing off here, doing strange things just to amuse myself. I have an extremely good reason for everything I do. Just because you don't know what I'm doing, doesn't mean I don't know what I'm doing.

Other people, purely innocently, don't know what a life like this is like. They don't understand that I can't just walk around in a store like normal people do. I'm lame in both feet; most of my joints and connective tissues are diseased; a lot of my nervous system is too; I'm immunocompromised from steroids, so I'm way too susceptible to illness from contact with the public; I carry at least two, maybe three, serious infectious agents; and I'm extraordinarily allergic, with the asthma and sinusitis and itching and blocked ears and such that goes hand-in-hand. It's exhausting.

To go to the doctor means I scrub with surgical soap (Hibiclens) from head to toe first. I don't ever want to infect anyone else again. Got a cancellation, want to fit me in sooner? I'd love to come, but it can't be in the afternoon because the pollen and chemical allergens (e.g., gases released from sun-baked asphalt) are much worse as the day goes on. Mornings only.

I usually need to know a day ahead of time, minimum, so I can take extra and/or different antihistamines to protect me from people who wear perfume to the doctor's office. Or who wash their clothes in Tide. Not to mention the pollen, car exhaust, outdoor cigarette smoke, any new carpeting or furniture at the doctor's office, their cleaning products, so-called *air fresheners,* mold they don't bother killing because they use *air fresheners,* trying to use a public bathroom with all of the above crammed in it plus scented soap, hair spray, nail polish, more perfume, scented deodorant...You get the idea.

I also have to stop most physical activity for a day before an appointment. Otherwise, I'm too weak and tired to drive safely. Or, to communicate once I see the doc.

When it's bad, I can't talk very well. Questions are especially hard: my mind goes blank.

Here's what happened one fine day.

I went to get my monthly bloods done. I was especially sick and had some extra labs to do so I really had to go. Had to drive myself that day, no one to help. And I had to go there fasting.

The pollen was terrible. I was braindead when I walked inside and went to the receptionist.

She asked me what my name was.

I couldn't remember.

I went blank. So blank, I couldn't even think of how to tell her I didn't remember my name just now. I could not make words.

She asked me again.

Panic. Panic. Don't cry. Don't.

She looked at me. Officious. And then - miraculously! - saw what was happening, and calmly said: Got a driver's license for me?

Brilliant.

She read my name out loud to me. So I would know it, too. See?

I could have kissed her. She knew. She knew. And she took care of it without embarrassing me the tiniest bit.

I'm usually very conscientious about driving. That sick, a person shouldn't drive. It's not right. I'll leave my car in the parking lot, and call a friend or family or a cab to take me home. We can go get the car later.

But that day, I was both alone and broke. I drove home. I feel guilty to this day. I try to forgive myself but it's hard sometimes.

It struck me today, doing comments on another blog, that not everyone gets that I don't have anything approaching a normal life. Just saying, *I lack function*, doesn't get the message across to total strangers. Of course not, how could it?

So I thought I better spell it out, here and there. I need to remember that dealing with this strange hermit life is a big part of why I blog.