About Me

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I'm a mom, a wife, a best friend. Sick with CFIDS/ME/CFS and Fibromyalgia since 1975 as a result of a nasty flu while still in grad school, it wasn't until the late '80's that I received a diagnosis. Until that flu I'd never really been ill before. With each year I get progressively worse and add to the bucket load of symptoms I'm living with. I've been blessed with an incredible family and best friend who've stayed with me through my struggles as we continue to find a way out of this monstrous illness and its complications. We've tried seemingly every approach to find my way back to health. Often I think our best weapon in this undesirable and unasked-for adventure has been laughter.

Monday, September 10, 2012

A Shot In the Dark?


It's almost autumn, which is, theoretically speaking, my favorite time of year.  I love the fact that soon we can once again go back to wearing sweaters - better yet, blazers and boots. (OK, so technically, not so much for me, but what's a technicality among friends, eh?)

Suddenly, I no longer spend too much time wishing my skin were removable like the lining of an all-seasons raincoat, although perhaps I should reword that statement as I would love nothing better than to be given a new healthy body - and a brain too, if that's not asking for too much.  If you have CFIDS/ME and/or fibromyalgia and even migraines, you most probably know what I mean.  (If) you're able to get out, it means that the days have changed!   Fall means not only beautiful foliage and crisp clean air, but that it's also possible to breathe again without feeling as if you'd walked into the kitchen of a diner before air conditioners became affordable, much less invented.

But to me, fall also means a dangerous time of year.  The temperatures are so drastic that one day it goes from 90 degrees to the next day temperatures in the 60's or below to the 40's and '30's, depending on where you live, or what the climate decides to do that year.  You finally get to the cooler temperatures and then "Indian Summers" begin and they don't last a week or so, but all too often seesaw back and forth, worse than any hyperactive child on a school playground.

Suddenly viruses and germs start popping up from all over.  Children going back to school means that those germs and viruses find a perfect breeding ground for those "goodies" to start spreading their wings - if those little nasties had wings, that is!

The part which *I* happen to "love" best is that anyone who comes into MY house and comes anywhere near me becomes a "Typhoid Mary."  That is, most often they bring home the viruses and germs and yet don't normally get sick themselves.

It's all to do with a huge subgroup - for argument's sake, I will call it "a subgroup," because, really, no one knows what the heck really is going on with this "umbrella" of illnesses we at the moment call "Chronic Fatigue and Immune Dysfunction" or "Myalgic Encephalomyelitis." (I love the later term, "ME," but not spelling out those words!)  It all has to do with our wacko immune systems, which don't even need to belong to those with CFIDS/ME or fibromyalgia but just about anyone with a screwy immune system or enough stress.  In my "subgroup" at least, I have a under-active immune system and an over-active immune system, both at the same time, affecting different systems.  For example, it's under-active while fighting infections but over-active in responding to the initial viral infection. 

This year we started this "Autumn Syndrome" early and this year we all came down with some sort of bug that's now going around town, starting with Labor Day weekend.  My feeling is "really???  Already?"  Yes, we all pretty much had a cruddy Labor Day weekend with a following week to match it, despite my optimism.  (When will I ever learn?)  I felt badly for my family but I was also feeling pretty sorry for myself too, I admit it.  I'm not a robot: I do have days when I get really cranky and it's just that much harder to laugh.  I also have to admit that all too often the only time I'm sure if there's something "normal" wrong with me and not something that's due to my core illness of CFIDS/ME/fibro is by seeing if my family is affected or the town is affected.  Other times I feel as I'm the canary in the coalmine which warns of what will be seen in the upcoming fall/winter season.

No, I do not get the flu shot each year, although I have a couple of times in the past.   Just as with every aspect of CFIDS/ME, even the advice on flu shots has gone back and forth as to "yes, DO get the flu vaccine, ARE YOU INSANE?" or "NO, do NOT get the flu shot! ARE YOU INSANE?"   I gave it up after my second flu shot which gave me the flu yet again, and pretty bad bouts of it at that.  After I got over the flu - in both cases - I was much worse than before I'd had the vaccines.  I'm glad that finally, most places no longer twist your arm about getting one because that's what mine had been: twisting of the arm, despite hubby, a relatively healthy person (knock on wood!) refusing the flu shot each and every year.

And though I DO have a problem with some vaccines (do we really need as many vaccines as are being hauled out these days?), I do believe one vaccine which has served me well is the "pneumonia vaccine."  I'd come down with severe bronchitis one year which turned into pneumonia, went straight into pneumonia the second time around, coming close to death because we had a hard time finding an antibiotic that worked on me and the third time it was an incredibly close call.  Period.  That's when we all decided that a vaccine would be worthwhile (understatement?).  In this case, however, we knew what we were vaccinating for, and knew that I would definitely not survive a fourth bout of pneumonia.

All of which is to say that please watch yourselves this season, especially if you're relatively new to this horrific ordeal. I'm not sure that all the doctors out there agree in regards to the flu vaccinations - a nice way of saying too many don't want to admit that they've gone back and forth on every theory they've sprung on us better than any Olympian winning gymnastics team.   

In the meanwhile, hoping that all are feeling the best they can be, only better.  Ciao and paka.

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