Stories From The Chronic Life

Yep, it's my birthday. The big 42. I remember when 42 sounded ancient. Now that I've reach that age I can't say it's much different from the other years. I would like to think I have a bit more sense than I did at 20!

I always like my birthday--well, maybe not so much the aging part! I have always felt that my birthday is the one day that is mine. I came into the world on this day. And, I can do whatever I want (within the law). If I want to be a bum I can. If I want to have a celebration I can do that too. Mostly I find small ways to celebrate my life. I buy myself a book I've wanted to read, watch a movie I've wanted to see, go for a walk, work on a genealogy problem, learn something new, eat something special...whatever I want that day to be.

At the beginning of the week I was thinking about how old I was and I realized I was a year off! Well, I was never that good with math. My age isn't something I think of every day. I don't get asked like when I was in kindergarten. And, then I was very happy to answer "5 and a half years old"!!! Now when I give my age, I counter with "I'm the youngest of five". That's important. People need to know there are four others older than me. I do get some enjoyment out of knowing they will always be older than me.

As I hear my siblings complain about their aging bodies, I can't help but be a little irritated. I've had arthritis throughout my body for over 10 years. My feet have been ravaged, my neck and shoulders have had their days, and some times I can't bend my fingers (or straighten them depending on where I get stuck). So, when I hear them complain I want to counter "Quite your whining!" At least they got into their late forties before they started feeling creaky. I've dealt with this since my early thirties.

Which brings me to another thought...mentally I feel great. My genealogy and my website give me challenges to work through every day. My imagination is intact. I can sit with a 3 year old and come up with something entertaining. I can argue politics and mock politicians.

But, what of my body? If this is what arthritis has done to me by 42, what will I feel like at 52 or 62 or 72? Will I be smart enough to continue exercising so I don't lose my mobility? Will I hit more speed bumps? How will I respond to my diminishing abilities? I guess I won't know until I'm there. I could worry about it until those ages arrive. I think it's better to take it one day at a time. Who knows? Maybe they will find the miracle cure for ankylosing spondylitis or they'll figure out a way to replace the cartilage I lost in my feet. I won't waste time waiting for those days, but I hope that I can find enjoyment in each day as it comes

So...

HAPPY BIRTHDAY TO ME!

People think I'm crazy. But, I love my PMS! Sure, I get a little edgy. I might fly off the handle for no apparent reason. I may feel like electricity is running through my vains. I might even cry over a cereal commercial.

So, why do I love it so much? Most of the time I suffer from fatigue. I tend to doze off in the afternoon if I'm really tired. When I have PMS, I'm like the Tasmanian Devil. Suddenly, I have energy at my fingertips. It seems like the procrastination that plagues me three weeks out of the month vanishes.

It's not just the excess energy. I become an organizing and cleaning machine for at four to five days. Things just start to bug me. I feel that I must clean RIGHT NOW!!!

A stack of papers could be sitting on my desk for six months. Suddenly, I can't take it any more. I must organize and file that stack. Something need scrubbing? I'm there! How about that drawer that hasn't been opened since last Christmas? It's mine all mine!

The funny part is I hate to clean. Yet, during PMS I almost thrive on it. I can do it all--and I almost do!

It's probably a good thing that I get these bursts of frenetic energy. Otherwise, I may never get anything cleaned up. I'm already in danger of being found under a mound of genealogy binders. I hate to think what it would be like if I didn't get the monthly cleaning bug. At least, I know that I will get some things done some of the time.

And, it's a good outlet for my crankiness. I'm not the easiest to live with on any given day. When I'm PMS, I'm even worse. I can take out my aggressions on a desk or a file cabinet. Better than taking it out on people and pets.

One of the very few benefits of being disabled is the nifty blue handicapped plackard. I would trade that plackard for good health any day, let me tell you! Since I have it, I'm going to use it--without guilt.

I'm irked at times at how others react to my plackard. Not people who know me. They know how bad my arthritis is. I'm talking about peole like the woman in the store parking lot the other day. The minute she saw me put the plackard in my window, she stared. You'd think I was a suspected double agent. For some reason, she seemed to think she can pass judgement on my disability. So, she watched me until I got out of that car to "make sure" I really, really, really am disabled.

You know, what I did? I stared right back. Then I made sure I limped when I got out of the car, just to make her feel bad. Once she saw my ankle braces and surgery shoes, she looked away in embarrassment.

I need that plackard. Any time I stand in one place over 1 to 2 minutes pain seeps up through the soles of my feet into my ankles. Walking for more than 15 minutes seems like a marathon. By the time I finish whatever necessary shopping I've had to do, my feet feel like I've run them though a wringer. I may be only minimally sore when I get out of the car, but by the time I'm walking back, my feet are killing me.

How dare these people stand there with their healthier than thou attitude judging me. What do they know of another's physical pain or infirmary? Just because a person is not in a wheelchair, on crutches, or using a walker, does not mean that they can walk without pain. So someone cheats the system every now and then. Does that give people the right to look down upon everyone using a plackard as if they need to provide a medical note to every passerby to prove their necessity?

It's bad enough having a disability. Don't make me feel worse by staring me down. And, don't think you'll get anywhere. I've got four older siblings. I learned how to stare back along time ago.

Next time you feel the urge to pass judgment, ask yourself "I wonder if she has a disability I can't see?" Tell yourself "She could have cancer or fibromyalgia". Better yet, don't worry about it! My Mom always told me "Don't worry about what everyone else is doing, you just worry about what you're doing (meaning that I should not worry that my brother is getting away with something that I think I should get away with!) So, take my Mom's advice and remember that people with disabilities and illnesses don't need the extra weight of yoursneer. Life is hard enough for them already.

Phew! That was close. It was pouring all night. I saw a break in the storm and took Sierra for her walk. Just as we hit the walkway it began to drizzle. By the time we were in the door, it was storming.

Sierra drives me nuts when we don't go for walks. She gets stir crazy (and I do too!). She begins looking for entertainment and turns to stealing. A glove here, sunglasses there. Our own cleptomaniac.

These walks are as important to me as they are to her. Even with my sore feet, I've found walking to be the best kind of exercise. It gets all the parts moving and it's refreshing. You go outside and see something besides the white walls of the living room and the same old carpet.

I don't think I'd melt in the rain, but I do get out less. I worry about falling on the slippery cement or getting soaked and coming down with something. So, I sneak out when I can. 5 minutes here, 10 minutes there. Just enough to breath some fresh air and remember that the world is still around. Then I can come back inside and wipe the marks off the windows from the last time I stood waiting for the rain to break.

For some reason, my hands have really been sore this winter. Well, I sort of know why. I overdid it in December. All those Christmas activities like wrapping presents, addressing envelopes, hanging decorations took their toll. I have three swollen fingers on any given day--and your guess is as good as mine as to which will be the lucky fingers! Do you know how difficult it is to do things when you can't bend your finger?

I'm not one to just not do things. When faced with this latest challenge, I've had to put my little used brain to work. What things do I have to do? And, how can I do them without hands?

There are ways to minimize hand abuse. I put bandaids around sore fingers to remind me not to bend them. I can open some doors with my toes and others with my elbows. And my knees do a pretty good job of shutting them. Lights can be turned on with an arm (you can also use your nose or chin in desparate situations). I try not to carry anything with my fingers. My hands, wrists, and arms can hold most things. I also use a towel or wash rag to turn things that are too difficult to grip.

It isn't always easy finding a replacement for your hands. Certain body parts aren't suited for finger work. For instance, you have to have hands to brush your teeth. There's just no way getting around it (unless you ask someone else to do it and I don't know many love ones who would go that far!)

It's kind of funny because when I was a kid I used to think of all sorts of creative ways to do things rather than using my hands. Little did I know that I would have to employ those methods as a means of survival! If I'd know, I would have written them down.

Oh, webmasters, why do you frustrate me so??? Why do you create pages that can't be printed easily?

I have arthritis in my hands and shoulders. I have to limit my online time if I want to accomplish anything. One of the ways I do this is by printing pages out for further reading.

So, why do webmasters make it so dang difficult to print pages? Some put in clever programming so that a page can't be copied and pasted somewhere else. They do this by disabling your "opposite" click buttons. I realize that each writer must protect their work. But, this makes web surfing a little more difficult.

Other webmasters design pages that look beautiful on screen but when you print them out they are a horror. Page breaks are inserted that send form feeds to a printer. The page itself might print out in a 2 inch column in the middle. I hate this! I end up going through 4 pieces of paper for a one page articles. Still others put so many ads on their pages that you end up wasting half an ink cartridge to get 3 paragraphs of text.

I don't think many webmasters consider how difficult pages can be to print. They should! Think about all the folks witharthritis, carpel tunnel syndrome, tendonitis, broken bones, etc. They may also want to print out stuff to read later. People with vision problems may want to copy and paste your pages into a word processor so they can change the colors or enlarge the text for easier reading.

Here's a challenge to webmasters: How about spending an hour or two as if you couldn't use your hands for very long? You may be losing visitors because they've gotten frustrated with your page layout.

If you are going to do things that make printing more difficult, at least provide a printable page that is set to automatically print. And, make that page ad free! I do not understand why there needs to be advertising on the regular page and the printable page. Okay, I'll accept a banner ad at the top. I understand the need for revenue. But, placement of ads within the article are a nuisance! (And, you may not realize it but some of those animated ads and moving ads print over the top of your text obliterating much of the page.) You've turned a printable page into a regular page and that serves no one.

Maybe I'm being picky. I've been told that I can be from time to time. I can tell you if a webmaster makes my surfing a nuisance I won't be back to that website. Period. (Rant over...back to your regular programming :)

More reflections on this year...

As chronic disease can do, I felt exhausted the first part of this year. Fatigue plagued me daily. I fell asleep while reading. I couldn't keep up with my daily routine.

All my chores were falling behind. Between the fatigue and the lack of mobility, I wasn't getting anywhere. I began to feel like I would never get ahead on my growing "to do" list. I was very frustrated and irritated. Simple things like "clean out old bowl lids" were impossible unless I got a burst of PMS energy. I had to admit to myself that I could no longer keep up.

I began looking at house cleaning services, but they were very expensive. My Mom who was retiring about that time made me an offer. She'd keep the house is shape and charge me half as much as the Pros.

It's turned out a sweet deal. Since I can't physically do it anymore, I don't have to live in filth. My Mom loves cleaning (and I mean, she LOVES cleaning) and she needs a little spending money. So, it works out well for all.

It is a bit difficult admitting that I can do something even when it's something I hate to do like house work. I am more than happy to watch someone else do it. Some things are easier to give uip than others. Still it's one more thing I have to put in the "can't do" column.