Me and My Shadow

Many years back I applied for SS disability. I didn't have insurance when I became ill so after the first several years of many visits to the doctor I only went periodically. I had a diagnosis of 'pesticide poisoning' the first year but it was another 9 yrs before I was told I also had CEBV (later called CFS). In those early years I doubt any doctor knew the names for what I had. Incline Village wasn't to hit the news until several years later. No doctor doubted I was very ill. They just didn't know what to think of my symptoms. Once I had the CEBV diagnosis I applied for SSI. SS sent me to their medical doctor. He took my pulse, listened to my heart and lungs and sent me out the door. A while later I got a letter telling me to see a psychologist.

Now I had the suspicion that if I told this psychologist that I had 'environmental illness' he'd be sure to think I was nuts. I knew I wasn't nuts but I wasn't planning on mentioning EI to him. Instead I focused on CEBV and 'allergies'. I also wasn't planning on mentioning the pesticide poisoning for I'd learned long before that was a topic that was sure to win you the raised eyebrow of disbelief.

The doctor asked me a series of questions which I answered honestly. Finally he asked "Are you depressed?" I paused for a moment then said "Well, let's see. I can't do much with my kids these days. I can't attend their performances at school. I can't take them out to do physical things. I can't work, therefore I deal with constant money worries. I can't plan ahead because I never know how I'll feel hour to hour. I can't do many of the things I used to do but most of my old friends and even some family members have a hard time understanding that." My litany to him was a bit longer than this list... and then I said "Hmmm--- yup, I guess you could say I'm depressed" and watched him carefully figuring I just earned myself a diagnosis of depression (which by the way is not something I wanted... little did I know at the time that it is easier to get disability due to depression than it is based on CFS, at least at that time.).

He looked at me and retorted, "You're not depressed... You have circumstances that would make anyone depressed!".

Oh how right he was ! (He also told me he was going to recommend that I get disability but for some reason the SS office thought differently). Then he told me the reason he'd asked me those questions is because the SS M.D. had diagnosed me as depressed- based on my pulse, lung sound etc of course! Later he and I did end up having a discussion about pesticide poisoning and all my sensitivities to chemicals that resulted in. Seemed he perfectly understood because he had equally bad reactions to bee stings!. I asked him to tell me I was certifiable (sane) so I could officially make that claim : )

Why was I afraid of being thought of as nuts? And why didn't I want to be tagged as depressed? There are two reasons. If I took a survey of all my fellow pwc's, pwfm's and pwmcs's (read "people with---") and asked them what the most difficult thing they have to deal with aside from the symptoms at least 99% of them would say "the stress of having to explain and re-explain and explain again to others that I have a real physical illness that requires me to do certain things. Most don't understand, are misinformed, jump to wrong conclusions or worse---they doubt me and assume I'm faking it." I could write a whole blog on this and someday I will!

The second reason is very simple. The things I need to do to avoid having 'crashes', 'reactions' and getting progressively worse are not the same things one would need to do if the cause was depression or mental illness. More to the point, being pushed into doing those things most often recommended by the all-knowing-misinformed know-it-alls typically would be detrimental to my physical well-being. Things like "Oh you just need to exercise more!" and "You need to get out more often!". "You just need to take thus and so and force yourself to do things.." "You think about your symptoms too much" -- blah blah. Little do they realize that many of those things they suggest might kill me (some reactions can be life threatening). Worse still is if it is your doctor who has this opinion - 'its all in your head'- even when they won't come right out and tell you so. Having to put up with these people can be very stressful and take up a whole lot of the little energy we have... and can actually make us sicker.

Undoubtably anyone who has any of these chronic invisible illnesses get depressed. Who wouldn't? They totally disassemble your old lifestyle and like Humpty Dumpty you're left to pick up the pieces and reassemble them again, but what you end up with is but a warped reflection of what it once was. Life is never the same. Your definition of what is living changes too. Sometimes Humpty Dumpty now looks more like green eggs and ham. Mind you that is mostly from the mirror's view.

While we do change on the inside too (especially over time) it is mostly what our lifestyle looks like to others that is most obviously drastically changed. We're in bed a lot. We don't care so much about make-up and fashion. We now go for comfort over beauty. We become recluse instead of outgoing. We avoid Wallyworld... (for some reason Wallyworld is one store that makes many of us feel sick/react, perhaps the lighting and sensory overload caused). Our bank accounts dwindle with no new funds coming in and the things that might help us feel a bit better remain on the shelves unpurchased.

What many people don't realize is that we operate in survival mode. Day in and day out we are dealing with symptoms that are hard to just ignored, difficult if not outright impossible to distract ourselves from, though we try very hard. It's not like having an sprained ankle that you just stay off of for a while or a cold you can keep working through. Brainfog makes it impossible to think straight like living with a head stuffed full of molting cotton balls. You can't occupy your mind with crossword puzzles when your mind won't focus. You can't read books when you're so exhausted fatigued that your eyes won't focus let alone won't track down line to line and hope you can remember what was in the previous paragraph. And survival mode dictates that you don't think much or often about those things that are depressing. Perhaps in that area more than anything else we can be the world's biggest fakes. Survival requires hope. It requires lots of humor, laughter and distractions. The best prescription for survival is found in Philipians 4:8 :

Finally, brothers, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable--if anything is excellent or praiseworthy--think about such things.

It's best not to dwell too long on the problems and losses or on all the judgements of others heaped on our heads. To do that would be to bury yourself in a pile of dung you can't crawl out from under. Survival mode.

Yesterday my coping sheild failed me for a while. I saw a picture of a rustic restaurant in the mountains that reminded me of one I'd been to in Idlewild, California many,many years ago. For a moment I recalled the smell of fresh pine trees after a shower, remembered the crispness of clean mountain air of Colorado and oh so many places I've been in my lifetime. I'm a mountain country girl at heart and detest city life, which is where I live now. For a while I felt heavy grief and my soul yearned to stand there on some mountain again, gather up my earthly belongings and snuggle into some nice rustic cabin and call it home again. How I miss the mountains and small town life!

Then I stopped myself short before the tears fell. I can't afford the luxury of reminiscing things I can no longer do. I didn't want to start pondering all those things I long for and most likely will never be able to have. I need to stay forward looking and finding joy in those things I can still do. Lowering the survival shield might open a floodgate of sorrow that would take more energy to gather up again than I have.

If one day I win the lotto and get a bit of health again I will go live in the place of my dreams, attend a family reunion, see my grandkids and kids, travel a bit and have Christmas in May!

Until then reminisces and those dreams will remain with my shadow.

Survival mode engaged.