The Art of Chronic Illness

As I have sometimes mentioned, I have a chronic illness. It’s number three on the arthritis list, and sometimes I think it’s number one, but that’s just me. Most people think that there are just two version of arthritis—wrong!! When I started this little journey I was told there were 60 forms of arthritis, but if you count the subheadings in the lists, it’s probably more like 120. You know Venus Williams’s Sjogren’s disease? That’s a form of arthritis, although it doesn’t have the word in the title. Unfortunately, any form of arthritis is pretty much a chronic illness—you get it for life; there is no cure. Fortunately, for mine there are drugs that help mitigate the problems to some extent.

But what do you do with those problems? In my case, I’m lucky; I’m considered to have a mild-to-moderate case, and I really can’t imagine how bad it gets with the moderate-to-severe cases because I’m really not happy right now with where I am with this. Apparently I’ve been in a “flare” for almost two months now (based on what my rheumatologist said the other day), and counting. He can’t predict when it might end; all he can do is tweak the meds in order to try to make things slightly better. Hopefully, the weather will improve and the rain will stop soon. A couple of drier, warmer weeks will definitely help things improve and my attitude will turn up again. (Frankly, it's been so rainy here that not only are we out of the moderate drought people were predicting, but I haven't had to water the lawn yet, and that's really unusual for late June. But, that's also beside the point.)

The real issue is in deciding that you will live your life in spite of the disease, and not let it dictate what you will do. At least, that’s how I do things. 

So, what happens?

I refuse to give in to the problem. Therefore, no matter what, I get out of bed at just about the same time every weekday, sometimes more slowly than others, and I go about my business. What does that mean? I just touted up numbers and essentially, I just about doubled my business income this quarter over the last one. Now, having said that, I should admit that the first quarter of this year was not great. There just wasn’t enough work out there from my clients and I had trouble finding new ones. Fortunately, in mid-March I picked up a very steady assignment plus another new client, and had work from some of my steadier clients. It was a big help, and this next quarter is also looking decent. But the issue is that I never missed a deadline, and only had to cancel once—and not for arthritis, jbut for a stomach bug that made things difficult.

I have crocheted for years. I committed to making a dog-shaped afghan for my granddaughter. It was an easy pattern that went fairly quickly, but the winter and spring were not good for my kind of problem and I had to stop for a bit so my hands could recover. Oh, and I had then said I’d make a matching afghan for her very close friend. What I thought I’d deliver by late March was actually delivered at the end of May. Not sure when I’ll be picking up a crochet hook again, but it probably won’t be one of the really skinny ones unless I have a thick handle on it. But, they got done. Now, I’m working on an alphabet needlepoint for the anticipated second grandchild—I’ll need it done by Thanksgiving. Any idea how many little holes you have to fill with the thin floss and really thin needle? I work for a couple of hours at a time, and then come back a few days later and have at it. No matter what, it will be done, and framed, on time.

My family came to visit on the Memorial Day weekend, and I kept up with everything. Yes, I sat down sometimes when I got too tired but I’m hoping it wasn’t wildly noticeable. They know my hands are not in great shape so my issues in picking up my granddaughter were not considered all that big. After she left, I sat down for the afternoon—and cleaned up more the next day. Everything gets done, but on my schedule.

What’s the point?

If I were to let the arthritis have the last word, none of this would happen. I’d just sit here with an e-reader (much lighter than an actual book) and do next to nothing. Instead, it’s better for anyone with a chronic illness just to live. I still go walking as often as I can (usually the floors are flat there; if there’s even a quarter-inch lip on a sidewalk I’ll find it and fall over it so the mall is just better). The issue is to choose to do; not choose to sit. I know that not everyone can do that, but then again, I believe that even if my illness was in the severe category, I’d make the choice to do I have to believe that everyone can do something, even if lying down; it’s the only way we can have productive lives.

Even my rheumatologist is sometimes surprised that I keep going regardless. My impression after my last visit was that he wants me to slow down just a little bit in order to handle the flare. My greatest fear, though, is that if I give into problems any more than I already do, it will start to take over. I imagine that at some point in the future I will have to slow down to accommodate it, but right now, I just refuse to let it further impact my life.

I think that dealing with everyday life along with a chronic illness is an ongoing fight for everyone, but has to be done on our own terms—and those are different for every “victim.” With any luck, no one else will notice my fights.

And yes, it’s been a long time since I’ve posted here. The weather and the illness were part of that issue, as was the avalanche of work. Plus, can’t seem to find the lists of topics I have on index cards on my desk. I write them down as I think of them, then can’t remember what I wanted to do. That issue will be handled this week when I absolutely promise to clean out that desk. I’ve got a new work setup that I think will be better in the long run, and it’s time to clean out anyway. A good purge of “stuff” always makes me feel better.

The Diet War            

 Like many women, especially we older ones, I have an ongoing fight with my weight. I frequently feel that I gain weight anytime I look at a carb. But I also really like carbs, so it’s an ongoing internal war. In 1999 I was at my heaviest (which was nowhere near the numbers you read about people losing). So, I decided that was it and weight would be coming off.

Two Parts

We all know that the issue is diet and exercise I’ve always been a walker, no matter what I weigh, so I pulled on sneakers and on my lunch break at work, I went out for a walk. If it was raining, I’d do some laps in the parking garage attached to the building. Otherwise, there was a huge circle in front of the hotel attached to the office building and I’d go there. I’d walk out the back—near the parking garage—work my way to the front, do the entire circle (probably over a half mile), then work my way to the back of the building and go inside I didn’t want to go more than a couple of miles because it was an office building and I couldn’t get a shower if I overdid it. Still, it was at least 30 minutes of walking 4-5 days a week (sometimes workload did me in), so I was trying.

Monday through Friday I was very careful in what I ate. After each walk I’d go to the cafeteria and get a salad and a bottle of water. I’d try to avoid any snacking, both during the day and at home at night—remember, I see a carb and I gain weight. On weekends I was a little less careful and sometimes dessert came in. Still, I began to lose weight. And to make a long effort short, in about 4 months I was down 25 pounds and all my clothes were so big on me. It was a great feeling—especially when people noticed that something had happened and there was less of me.

Years Later

Cut to 2010. I’ve gained back maybe 5 of the 25 pounds—something that’s really good since a lot of people tend to gain back even more. Then my daughter got married, and I looked really good thanks to a really good tailoring job at the dress boutique. But, I still felt I needed to lose more. So, back to walking, and being exceptionally vigilant. And over time I lost 14 pounds. Now I look really good   But it’s really hard to keep it off.

So here comes the baby shower. Yes, my daughter is pregnant and I’m part of the baby shower team. And I really didn’t think I ate all the badly that weekend, but I gained 4 pounds in 5 days – and I still can’t get them off. And the baby is 9 months old. So I promised myself new shoes if I can lose the 5 pounds in 4 weeks.

Age Is Catching Up

I’m walking more again. I’m watching everything I eat. But it is almost 4 years later, and I’m almost 4 years older, and my metabolism is really shot. And my arthritic hips really don’t like too much exercising—you know how it is: work out 1 day, suffer for 2 days. Or, spend 5 days helping with granddaughter, which means a lot of lifting, and you have to sit down for several days when you get home just to let your body catch up. But then again, I can still get into the smaller sizes of clothes that I have and there’s still space inside them. I just want those 5 pounds off again—actually, I’d like 7 or 8 pounds off but I don’t want to be cranky about it.

As I said, it’s a war. I think I’m losing it--in more ways than one.