i wish crying made me feel better

[rootofnewt]

I really need to address this with my doctor, but I don't know where to begin. I rarely get anxious, but after a few years of having this damned conglomeration of disorders, I do. I never know how a new doctor will react.


I want to work. Right now, I am not able to work. The combination of chronic pain, brain fog, and fatigue make it tough enough. Adding on the chemical sensitivities, allergies, and asthma make it nigh impossible. The thing is, it's damn hard to get the government to agree with this, which is one reason I haven't filed for disability. Another reason? I don't want to admit that I might never get well.

Looking at the myriad of problems, pain and fatigue are at the forefront. Okay, I could deal with the fatigue by working part-time, afternoons only, and I could *hope* that I don't have any major crashes. The thing is, these diseases are unpredictable. Even so, I could *try*. As for the pain... It's bad enough now that I can't concentrate. I can't sleep well. The meds which might possibly help this would likely make me loopier and render me unable to drive. I can't drive some days as it is.

Foot pain. We'll see how that progresses after I get the orthoses next month. I can't do any jobs which require standing or walking for any period of time. I force myself to walk now, but I always end up crying at night after boy goes to sleep because of the pain. I'm not crying because I'm depressed at the futility of the situation--I'm crying because it hurts *that badly*.

Carpal Tunnel issues--I have custom splints, but even they don't completely alleviate the pain and weakness in my hands. Since most sedentary jobs require a lot of typing or data entry, I'm not sure what i could do about it.

The chemical sensitivities and allergies are another issue. I can't work with people who wear perfume or lots of scents. I can't be around lysol or certain other cleaning chemicals. I'm allergic to some dyes and being around printers and copy machines can make me ill. I'm severely allergic to mold and dust, which are frequently issues in this area. My latex allergy is intense enough that I can't use rubber bands, nor can I touch triplicate forms (which often use rubber in their inks). Fresh carpets make me ill and I can't be around fresh paint or air fresheners. When I say ill in the MCS way, we're talking nausea, migraine, hives, incoherence, slurred speech, confusion, disorientation, intense drowsiness, blood pressure drops, etc.

Fluorescent lights trigger headaches for me.

What the hell could I do? I can't do anything that requires thinking on a regular basis because of the brain fog. I can't do anything remotely physical. I can't sit for extended periods of time or the fibro pain intensifies and I get cramps. I need somethiing where I can stretch and take breaks, yet not work so long that I crash.

This is so frustrating. I used to be so energetic. I used to be so vibrant. Once, I could actually think and form coherent statements about things other than food and trees. My degree in Russian is useless to me since I can't *think* at all and confuse words left and right in both English and Russian.

And I still have to face the fact that it's quite possible a lot of my problems were brought on by that damn cyst. In another year, I might feel significantly better. On the other hand, I stopped working in 2000. After five years, I won't be able to apply for disability, I'm told. So I need to decide in the next year and a half.

Meanwhile, the pain gets worse... the neuropathy intensifies... right now the fatigue is less severe, but i don't know how long it will last. And I start to wonder if I'll be able to enjoy any sense of good health before I'm too old to notice.

Comments

[designingwoman.livejournal.com]

Being in that boat of multiple problems, I sympathize as I know how the pain and sickness goes. I am going to say something...and it is hard to digest...it is very hard for those that are chronically ill...to admit that they have limitations and get help about it. It is like part of us has died and we go through the process called grieving...and the first part is denial...denying that it will be like this from now on. The next part is anger at being this way, then so on til comes acceptance. We tend to want to shy away from anything that puts it into black and white that we are limited and sick...ie..filing for disability. It normally takes three times for most people...me..I got turned down twice because my problems were not on the list of automatice disabling diseases...so they had to show that what my diseases did to me made me disabled even if the diseases were to disappear. I got a diability lawyer...no money upfront ..comes out of back pay and he did all the work I was too tired to do. Making sure of doctors papers, etc. And I was approved a month later. And because of getting on disability, I then had medical coverage through medicaire..was on medicaid to begin with. My roommate was the same way..we became roommates because of being disabled..to share costs. But, because of disability and medicaid, we were able to get things we normally would not be able to get..like the bed, the bars for the shower, shower chair, etc that made life a little easier. so..all this said...get the disability papers hon and fill them out...and if your doctors don't cooperate...let the disability lawyer do it it...if the doc...mine did not fill out anything on my re-eval and they sent me to their doc...and he did it. Anyway...do what makes it easier for you hon and what gets you the most help.
hugs
Deb