Wednesday, May 31, 2006

Do I need a Doctor's Note here??

I wish I could say that I've been absent for a bit because I've been so busy having fun in the sun, taking a trip to those magestic Rocky Mountains that I used to call home, or planting a beautiful flower garden but alas that's not why I've been gone... I'm sure you could guess in one guess what I've actually been doing?

I woke up one morning a while ago and found the path to the kitchen was a verrrry long distance, even further than it is on most days. Assuming it would lift a bit later on I poured myself a cup of coffee (decaf- doesn't exactly get you going but I can't handle caffeine much at all!) while propping myself against the countertop to stay upright. I'm still can't figure out how your legs can feel both like jello and lead at the same time. As I shuffled back to the bed thinking about calling a friend I thought, 'how on earth can I describe the difference between how I'm feeling today and most other days? It's the same, sort of, yet oh so much more intense.'

Three days later and still moving slower than a snail on Valium I assumed I was in a major crash. I ached all over. My eyelids were puffy, something that is a telltale sign that I'm not doing well. By the fourth day of same I was beginning to wonder if I'd ever see the living room again.

After throat got sore and ears started aching I started wondering. Then a friend called. She's one of those work til you drop sorts that will go to work when she's sick as a dog and is proud of it. Turned out her whole family had been home sick all week with, guess what? the exact same symptoms I had! I went "oh doh me!". Who can tell the difference between being ill with CFS and 'regular junk' ??!! Maybe the earache and headache should have tipped me off ? but then I have allergies and MCS too...

I took the opportunity to point out to her how those of us who have CFS are ALWAYS pushing ourselves. We get up and throw the dishes in the dishwasher when we can barely stand. Yes, it may not seem to others like we are accomplishing much, but hey, if they resided in our bodies and realized just how difficult loading that dishwasher was, how much effort it took and the fallout afterwards perhaps they'd understand a bit more. Meanwhile I had a lesson to learn from Miss Superwoman too. SHE went to bed guilt free when she couldn't stand up. We might be laying but we're seldom feeling okay about it.

I wrote in the blog titled "Who's in charge here anyway" how I'd read about a guy whose CFS improved and how he learned that rest was a requirement of healing. Specifically I learned about viewing resting as something I need like a diabetic needs insulin and not just think of it as something you do when you have to (which is indeed much of the time), or what you do after you start collapsing. I think I need to reread that again! Apparantly I haven't taken my own advice very well...

[I thot I was finally over 'the bug' but today I'm not quite so sure. I don't feel quite so weak but my head, sinuses? ... well... my whole body is still in the dumpers.]

I doubt I'll ever be able to discern when I have "a bug" from when I'm having a crash..

Ps 127:2 In vain you rise early and stay up late, toiling for food to eat--
for he grants sleep to those he loves.

Tuesday, May 16, 2006

Two Eyed Purple People Eater

I'm surprised to see that it's been a while since I posted a blog here, but then again I guess I shouldn't be. I've spent the last several days in a brain-blitzed fog with keel-over, jelly-kneed, weakness type fatigue to go with it not to mention the assorted other lovely symptoms like tingling, pain, sinus, and the feeling of wearing sox when I'm not wearing sox at all.

I've had moments when I found myself falling asleep in the middle of the day which is totally untypical for me despite my usual fatigue. It's not the these symptoms were unfamiliar but rather the intensity, duration and combination of them which told me something was different.

Like many other times like this I started going through the mental check off list---Is there flu going around? Is this like other (cfs) crashes I've had? Have I eaten anything new-different? Have I been around anything different? Having CFS and MCS and FM it's often difficult to sort out what causes what.

You might think it doesn't make any difference what the cause is, but to me it does because SOME things I've learned little tips and tricks to do that help, and I sure want to know if it's something I can avoid or need to get away from!

Then I recalled a succession of things that happened several nights back. I'd gone to ask my neighbor something and when she answered her door I was greeting by a mushroom cloud of fumes! She doesn't apply perfume inside her suite but of course no matter where she's put it on it's in her clothes, hair etc and therefore weasels its way into her apartment where it can come up my air vents.

I hadn't run into that strong of 'fumes on her before (tho ya she's been a stinker sometimes) and so wasn't expecting it. I backed up the stairwell a few steps thinking I could complete my mission and after a few moments no longer noticed the smell ---but---suddenly I noticed the sound of my voice was changing! Kermit had appeared! I started sounding froggier and froggier until I was sure I was croaking. Sure enough I started feeling that horrid, scary feeling of throat tightening. Then I was coughing...

Oddly I hadn't had this happen for a long time. Years ago I had had several episodes when exposed to perfume which sent me rushing to the Dr. who gave me a cortisone shot. I was becoming convinced recently that my reactions had changed over the years as my "early warning alarm" seemed to have disappeared. Back in those early days when exposed to perfumes I would first get a very sore throat, like I'd drank acid. That would tell me to EXIT FAST! If I lingered too long or if the 'fumes were especially strong the swelling throat would follow. Several weeks ago it had occurred to me that I hadn't had that for a long time but wondered if I hadn't developed a more delayed reaction of a different nature.

I made the great escape from the stinky stairwell and tried to 'air out' a bit praying the tightening wouldn't progress. Sometimes that helps if I move fast enough. After a short 'airing out' on the back porch I decided I felt as good as I was going to for a while and went into the house.

About an hour later I went outside again, only this time I was slammed by air thick with someone's laundry soaps! Laundry smells often drift through the air but wouldn't you know, that night it was ten times thicker than usual. Yucko! I shake my head in amazement wondering how come people really believe that super-stinky laundry is somehow cleaner than laundry with no smell. There must be a bunch of them convinced of that as they all seem to use the most awfully stinky stuff out there. It's not a pleasant smell, more like one that sticks a bony sharp finger up your nose and twists. Phooey! Needless to say I quickly turned back into the house.

Now I'm really not a glutton for punishment but perhaps more a creature of habit. I often go out and sit on my back porch for a few minutes throughout the day. The house can get to feeling rather stuffy. So a while later I ventured towards the back door again. I barely had it cracked when I noticed yet another horrible smell - burning plastic!

I'm really not paranoid but the fact is that plastics are NOT a good thing for people with MCS to be around much less molten, burning plastic! Shudder! It made me recall burning electrical wires I once had the misfortune to experience which quickly made me holler for husband to come take a whiff. Why is it that when we think we smell something that we know will cause us trouble that we always seem to require a second whiff to make sure?! ???

Husband came out, took one whiff (he has MCS too but doesn't react to as many things as I do - but enough he shouldn't be whiffing anything toxic and neither should any other sane human being!) and pronounced "burning styrofoam". YUCK! Did you know that two people can not squeeze through one screendoor opening at the same time?

And so it was earlier tonight that I recalled that night of stink and wondered if perhaps that is what lead to these days and days of dysfunction. Problem is that at this type I can't recall if I was already feeling so dysfunctional before that stinky night or when it all kicked up. Argh. Some detective I am huh? ---but I figured it was possible...

...or perhaps it is 'a bug'?? I was feeling a tad warm earlier today, feverish without a real fever and my daughter's friend who was here a bit over a weekago came down with the flu the day after...

...or maybe someone had sprayed a lawn???

...or maybe it's some combination of junk ??

Then the front door opened and in walked my teenager after a weekend of overnights with a friend. She promptly pranced into my bedroom to show me her freshly done "pink" hair which was more a shade of pink-magenta! It seems the friend she'd gone with earlier tonight has aspirations of being a great hairdresser and figured this was the perfect color for daughter dear.

Well--- it didn't look to bad on her---not the sort of color one would assume one was born with--or that elderly ladies might approve of--- but it reeked! --- or perhaps it was the smathering of hair wax the friend had used to make it ruffly looking?? ---or the hairspray they'd added as the final 'fix' ??? ...

Regardless, all I know is that I've been done in by my two-eyed purple people eater! ...or perhaps more accurately I should say "finished off". Yuppers I'm now totally done in, as if the last few days crash hadn't been enough.

So from the confines of my closed off bedroom I bid you goodnite.

...wonder how many days it will take for the smell to wear off her hair?? I did turn the hepa on full blast, opened up all the windows and turn a fan didn't I ???? ....

...have to make a note to self to have husband take a whiff and see if the air is clear in the morning...

Wednesday, May 03, 2006

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.