Melissa Kaplan's
Chronic Neuroimmune Diseases
Information on CFS, FM, MCS, Lyme Disease, Thyroid, and more...
Last updated January 1, 2014

Life is full of rules, boundaries, and limitations, some spoken, and some unspoken but widely acknowledged and adhered to. Sometimes the limitations are absurd. Many that I grew up with have fallen, such as "women can't work in construction". In high school, I was not allowed to take auto shop, only cooking, despite the fact that I'd been cooking several course dinners for my family for many years (since my parents' work schedule meant they didn't get home until after 7 PM most evenings) and so was already well beyond the class curriculum.

I never worked in construction, but I designed office spaces from the slab up and punch-listed the walkthroughs with the contractors. They were amused I knew what punch-listing was; they were less so once they realized I could read the blueprints and change orders and recognize what wasn't built to spec.

As one of the first postwar volunteers let into Israel after the 1973 war, I worked on a kibbutz, celebrating my 19th birthday in a bomb shelter. After working at the carrot factory (slinging 70 pound bags of carrots after working eight hours standing at a conveyor belt sorting the carrots), at the onion sorter place (factory is too high-class a name for the machine in an open-walled structure at which we sorted muddy clumps of onions that had been sitting in crates for 3 months), and the carrot fields, I was moved to the plastics factory. There, the factory management finally let me train on the big polystyrene extruder on which no foreigner - or female - had ever been allowed to work. I turned out to have a knack for extruders and so ended up spending seven months of 8-16 hour days making polystyrene and polyvinyl chloride plastics in a poorly ventilated Quonset hut. No doubt, inhaling all those particulates and VOCs probably has something to do with why I reacted so adversely to the crude oil at the oil spills I worked at almost 20 years later...and my CND and persistent tickborne infections today.

Ah, CND and TBI. My neuroimmunoendocrine system, 22 years after diagnosis, still finds new and interesting ways to bedevil me. My immune system gets hyper, flinging out B cells galore, while my ANS has alternately decides that my body is either severely hypoglycemic or frolicking with the seals out on an Antarctic ice flow. My endocrine system can't decide if I'm just starting adolescence or in advanced senility. My gut, after years of difficulty, was finally diagnosed with Crohn's and ulcerative colitis, and can't tolerate gluten or dairy protein (casein). Much fun.

Dealing with everything associated with my body's betrayal, as with many chronic illnesses, has meant needing to set some limitations for myself. One of them I've mentioned before: I don't answer the phone or the door if I don't feel up to it. We have become so programmed to the stimuli of their chimes and rings that we have forgotten that responding to them is purely voluntary. Really. It is. The world as we know it will not come to an end if we don't answer them. (Which may be a good thing or bad thing, depending on your perspective...)

Another thing I did was to cut off communication with my brother. After 30+ years of putting up with his manipulative behaviors and attitude, my last conversation with him was 22 years ago when he told me "all you need is to take some Valium and you'll be fine."

Another rule I instituted was "it is okay to say no" to things I had previously been unable to say "no" to: taking in yet another critically ill and mistreated iguana and doing yet another classroom visit were the toughest ones. I had to come to grips with the fact that I was no longer Super Rehabber and that my finances were in such a state that I could not continue to pay the vet bills nor hire anyone to help.

I also learned how to say no to invitations to gatherings that I was not up to going to. Sometimes the physical toll they take on me is worth it; other times, it isn't. It hasn't always easy, but the people who are perturbed when I say no aren't here to take care of me when I collapse afterwards. If I can be mature enough to deal with the uncertainties my illness has imposed upon me, so can they. If they don't understand, that is their problem, not mine.

In some ways, I was born lucky: the middle child of driven parents. While "stress" was probably not the first word out of my mouth, patterns of living amidst stress and dealing with it began early on. Family upheavals were as varied as they were frequent. Entering the corporate world and working my way up the management ladder at a relatively young age was a challenge I generally enjoyed. The only stress-free periods were when I finally did take vacations (they made me: no one was allowed to accumulate more than 8 weeks a year), heading off to the desert or Hawaii where I broiled myself until well done.

Major events, including accidents, family deaths, and losing my house and pretty much everything I owned to fire, put me off stride occasionally. I generally dealt with all these stresses by diving into work or other projects. "No" simply wasn't in my vocabulary.

Now I deal with stresses by, well, by diving into projects. Napping is an important project. Naps must be done properly to derive benefit from them. Not answering the phone or door is part of doing naps and other such projects correctly.

Focusing on something that feeds my soul is another important way of dealing with stress. While I can't go back to work and change my income or insurance coverage situation, I can ignore those particular stresses for periods of time by doing something I enjoy. It may be reading, knitting, cuddling a lizard, or just sitting outside listening the to sounds of the breeze in the trees and the birds going about their lives. Finding music that doesn't bother my now hypersensitive ears works, as does writing what comes to me (rather than what I must or feel compelled to). When cabin fever starts to set in, I go someplace "safe", where I know I can be without being subjected to excessive noise or chemicals: a friend's store, or home, or someplace away from traffic where I can sit and listen to other leaves rustling and other birds going about their lives.

Sometimes, I need to talk to someone who understands what I'm going through. Then I will call and spend a few moments chatting or venting. The call may end there, or may go on to talk about things of a more general nature having nothing to do with being ill. Since the people I call are themselves ill, I don't burden them with my black moments of despair that still creep up on me, often in the dark hours of the night when I am once again beyond the help of any drug get me to sleep. Should the abyss loom larger than I can cross on my own, there are numbers I can call, agencies who are trained to help those in similar straits.

Such are the limits I impose upon myself, limits to protect myself and to protect those I care about who I know are as sick as I am. They have their own abyss they have to face and deal with; they don't need theirs made larger and more dangerous by adding the depths of mine to theirs.

If you have not been setting limits for yourself, think seriously about doing so. Limits that help you reduce stress and increase joy in your life are essential for any measure of recovery to occur.

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