The need for family and social/medical support in Fibromyalgia


Last night, I just could not take sitting here at the computer, even though I have things I need to do, so I piled up on the sofa early, to watch TV. When I got up to get a drink, I found my mate had done the dishes. He has no idea how much that means to me. Support on the bad days, matters so much, and I thank all the Gods, that he “gets it”

I have lost two mates due to this curd, as they didn’t “get it”  one almost directly after being diagnosed with it. I was in shock, I was depressed, and in an almost constant flare, and he just could not deal with all the changes. We talked about me quitting work for my healths sake, and yet, when I did, everything changed. 

In short order, since I was no longer making money, I was shut out of financial decisions, then came the complaints of household work not done, etc etc. I think you can see the picture for yourself. It ended in divorce. ( statical note: over 75% of unions, dissolve when major illness or injury, enters the picture )

In short, my life, as I knew it, had just taken a major dive, no differently than if I had gotten run over by a bus and broken half my body, yet since there was no “accident” there was little to no consideration, from anyone. For any life changing illness, we go through the same stages as we do for grief, they are:

Shock stage: This is the initial paralysis, we are reeling here, as our life as we knew it, just changed.

Denial stage: Trying to deny it’s real

Anger stage: Frustrated, lashing out and generally enraged.

Bargaining stage: Almost desperation, as we try this or that medication, or procedure, with an idea in mind, if we do X we can cure this and it will go away.

Depression stage: When we finally realize, it is real, it’s not going away.

Testing stage: At this point, if we are lucky, we are looking for more realistic solutions.

Acceptance stage: The point were we look forward and move onward.

It took me over a year, to reach the testing stage, and I almost dropped myself into a full blown depression in the process, as not only was I getting little consideration from my mate, I was not getting a lot of help from my doctors either. As when I was diagnosed, FM was the ” its all in your head” send them to a shrink idea, in the minds of most doctors.

In fact, the doctor I had, at the time I got my diagnosis, the same one who had been treating me for all the various ailments, ones even he considered legitimate and provable, gave me pain killers etc. for over two years, dropped me like a hot rock when the RA doctor he sent me to, sent back a diagnosis of Fibromyaligia.

All support from him, stopped, all medications, everything. (  in fact he told me to go see  psychiatrist … just as an FYI, I got him fired from the university I was attending at the time for such treatment, but those who took his place, as soon as they read FM on the chart, were not much better as far as support ) I was entirely abandoned, by both family and the medical society.

For many years after that, I learned the hard way, how to manage it, as best I could, with often no help whatsoever. Now some signs, like IBS, that those around me then, could at least see, were given some consideration, in fact it was considered the worst issue I had, as its effects, are visible. But the rest ? No, no one really got it.

Now, thankfully, some 15 years later, most, mind I say most of that, has changed. My current doctor “gets it” and is trying, within the limits of the medical care system, to help. And, she is very understanding of my frustrations.

I finally got SSI, after over 10 years and three states of trying, as again, in the public mind FM is finally getting some recognition and a little respect from at least part of the system. But I honestly believe, that if I did not have a whole host of other issues, strokes, body-wide joint problems, spinal stenosis, bone density issues etc, that are provable at my age now. I still would not have gotten it, for FM alone.

The long story short here is, do NOT let those with FM, that you love, fight that fight, alone. As the problem is real, the issues are real, and to make them have to fight that fight all alone is courting literal insanity and yes.. even death.

Something to keep in mind, Chronic pain is at the root of 70% of all suicides. The national average is 2.9% of the population, for those of us with FM the average is 10 times that, at 29.9. So consider well, before you leave your loved one with FM, out in the cold, as you may well be condemning them, to death

More soon….

BB

Esta

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