browser life

I guess this happens to everyone once in awhile: you look at a particular situation and it hits you like an avalanche. And you realize that the situation sucks and that you can't do a damned thing about it. And you wish you were someone else, or at least a luckier version of yourself.

I was researching my new meds, and I started getting really hopeful that maybe, FINALLY, I might be able to rid myself of this monster fatigue. Chronically ill people do this a lot whenever they start a new treatment: they start hoping that this might be THE ONE that gives them back their quality of life, their independence, all the things they lost when they got sick. It's unrealistic, but it happens, however briefly. It's like a poor person who daydreams about winning the lottery and thinking that it would solve all their problems.

I've been saying for awhile that if I could just get rid of the fatigue, I could go back to work. That's what I've really, really wanted to believe. But then I started imagining what my life would actually be like if I were employed again, and I realized something: if the fatigue was the only thing that was gone, I would still have to engage in so much self-care that I wouldn't actually have TIME for a job.

First, there's the pills. I take no less than 13 prescription pills per day (some medications have to be taken more than once a day). And even though I have trimmed down the supplements to the essentials due to budget problems, there are still six calcium/magnesium tablets, one B-complex multi-vitamin, two pharmaceutical grade fish oil capsules, and one probiotic per day. That's a grand total of 23 pills, not counting the meds I take on an as needed basis.

Then there are the non-pill meds: eyedrops, creams, pastes, and now inhalers no less than twice a day. And I still need over the counter eyedrops, mouth products, antacids, sinus sprays, laxatives, topical pain relievers, lotions, etc. I've got more health care products in my house than Walgreens.

The real time consuming stuff is procedural, the biggest culprit being the food. I have to eat gluten free, moderate carb, easy to digest meals every few hours. I also need to rinse my sinuses twice a day, check my glucose levels and be extremely vigilant about keeping my mouth clean with the electric toothbrush, waterpik, floss, mouthwash, etc.

Also, I have to take a great deal of care to avoid repetitive motion injury, trigger points, worsening of neuropathy and edema. I must elevate my feet a certain percentage of the day, keep my computer sessions short, and avoid any prolonged standing, reaching, kneeling, lifting or squatting (more than 30 second of squatting and my feet go numb). Oh, and like the rest of the world, I need adequate sleep and some semblance of exercise.

So how much of my day is left for a JOB? If I hadn't been dumped by my LTD company who claims I am well enough to work, it wouldn't be so much an issue. But I am feeling desperate about the money situation and am falling into the trap of believing that my life would be so much better if I were employed.

I suppose I should more frequently remind myself what I was like during those last few years at the newspaper agency whenever I get too antsy to jump back into the workforce. Besides continually dozing off at my desk, I had those lovely electric jolts of pain from neuropathy, I was making unprecedented errors due to cognitive dysfunction, I had to dash off to the restroom once an hour, my eyes always felt like they had sand in them, my hands were icy and stiff and painful, my feet were usually swollen, I had frequent migraines, I would develop uncontrollable fits of coughing around co-worker's perfume, and I had difficulty walking from the parking garage to my work area. And that was on the days I was well enough to work.

But DAMN, I hate being so high maintenance! This whole business of discovering I have asthma has sent me over the edge. Now I get to carry albuterol around with me all the time along with my water bottle, eyedrops, lip balm, saliva substitute, sunglasses and emergency snack for my diabetes.

When I was healthy, I could decide on the spur of the moment to go take pictures someplace and grab my camera and ID and JUST LEAVE. No muss, no fuss. Now the closest I get to a fun mountain drive is playing my homemade cassettes in the car on the way to aquacise, hoping I won't be too exhausted by the class to do anything when I get home.

I know I need to not jump the gun and just be patient and see what happens with the new treatments. But sheesh, I am soooo burned out on the whole raising my hopes and having them dashed thang. And it doesn't help that if I were to suddenly cure the Sjogren's, I'd still have the fibromyalgia, and if I cured the diabetes, I'd still have the gastroparesis, and so on.

I need a vacation from myself.