Tuesday, January 08, 2013

An Apology to Our Donors

For quite some time I’ve been contemplating the necessity of writing this post. Or rather of having to write it eventually, because surely the next day would be better than this one. And the next; and then the one after that… and suddenly by some magic process I’d be back to my old self and writing thank you acknowledgments as I used to do.

I’m told this is a common fantasy for people with fibromyalgia: each day we hope we’ll be better tomorrow, or the day after, or next week, or maybe next month, or perhaps with this next new diet or vitamin. What fools us are the unpredictable and all too-brief times of remission.

In a way, “fibro fog” (the name they give our inability to remember people, places, events, etc.) can be a blessing because it can be hard to recall what we’ve lost. But when we suddenly have, without rhyme or reason, a remission of pain and fatigue, and when our ability to think returns, we’re sooo certain it’s all over. Suddenly we have the energy to catch up on all the things we’d left undone. Back in the beginning when this disorder is first setting in most of us don’t believe it’s chronic. So we continue with our “To Do” lists as though our routines will soon resume their ‘normal’ outlines. It is only when the task of actually writing up those lists becomes a source of frustration and shame that we begin to comprehend the devastation we’re living. The first few remissions followed by relapses are disorienting, both for us and for people who are not yet used to our strange levels of dysfunction — “but you don’t look sick…”

All of which is to say this out loud — in fact the time for admitting the truth to myself is past due and our donors certainly deserve an explanation: my energy level will never again be what it was before the onset of fibromyalgia. I will never be a dependable correspondent. In fact, I will sometimes write to you and not remember that I did so. Despite the lists the Baron draws up for me, I sometimes have to preface a thank you note with , “I may already have told you this… ”

I never was big on reality, though, particularly when it came to accepting the limits of what I might accomplish. The Baron used to tell me that he was going to write on my forehead, “You Do Not Have To Do Everything Good Thing You Think Of”. He said he’d write it backwards so that when I looked in the mirror it would be a reminder of my Pollyanna tendencies to want to take care of every bit of suffering I came upon. That was before the onset of fibromyalgia; it’s not so bad now because while I may want to do something or other, I realize how far out of reach it has become. Besides, fibromyalgia isolates one, so I’m seldom out in company hearing about unmet needs. But when I am — whoo, boy!

Just yesterday the Baron took me to get my hair cut (driving isn’t a good idea when your reflexes are as slow as mine are and there are as many deer as we’re surrounded by). Before I left the beautician’s shop I was volunteering to help a woman who was considering homeschooling her youngest, a child who hates school and always has. I had no business being Miz Goody Two-Shoes when I don’t even have shoes (so to speak), but there you go. I doubt the worried mother is going to follow through on her desire to homeschool since she is part of a big clan who will give her grief if she attempts it. But there you go — Miz Dymphna to the Rescue… Again.

A long story just to tell our donors I haven’t forgotten you. Nor has the Baron. He is concerned about my inability to write more of the thank you notes since I enjoy that task. When he asks why I can suddenly post a comment here and there on the blog, I have to explain the difference. With our comment section, I have only to open the thread and say something. With thank you notes, I have to find my list, then ascertain where I left off, and then fully consider the person I’m writing, where they’re from, how often they’ve donated, and perhaps try to recall what I remember of previous conversations… with my memory, that’s… well, let’s say it’s a bit of a challenge.

In summary, you may hear from the Baron and not from me. That won’t bother y’all I’m sure — after all, he’s the engine that makes this website function. It frustrates me, though. He already does so much by himself, and this was one area I was able to accomplish and be of assistance. But that’s the nature of fibromyalgia: one’s areas of competencies shrink inexorably.

Surrender in the teeth of reality is a bitch a bite. In truth I don’t think I’m constitutionally capable of it. Let me tell you about this new diet I came across…

11 comments:

Zilla said...

I'm so sorry to read of your illness, Dymphna. I had been misdiagnosed with fibro before we learned that I have advanced Lyme & Babesia, because the symptoms are very similar, so i can empathize with the exhaustion, brainfog, and frustration, and the pain. One thing that did jump out at me in your post is that you are surrounded by deer. If you haven't already, you might want to get evaluated for tick diseases to rule them out, because some of those can improve with treatment while they still don't really know how to best help people suffering with fibromyalgia. I have friends who suffer from fibro and I myself live with a mysterious "you don't look sick" illness that ruins a person's life, so in summation, I think I shall just leave you with a gentle e-hug and a prayer that the next new thing you try helps you a million fold. (((hugs)))

Dymphna said...

Thanks, zilla. My doc - or the only doc I trust - has ruled out Lyme, etc. He sez it's a subset of complex chronic PTSD. Chronic, as in acquired in a mis-spent infancy, iow preverbally.

The worst of it doesn't show up till much, much later.

And of course that's why I chose Dymphna, since she's the patron saint of loonies. Besides, in her lifetime - before her loving father chopped her head off - she had a following in Geel, Belgium (where she'd fled to get away from lecherous Daddums).

People came to her for healing. After her death - quite a bit later - they built a church in her name. IIRC, it eventually became a cathedral and Gheel was the site of a mental asylum. The townfolk took on the responsibility of caring for the inmates, with families often 'adopting' one for holidays and such.

Other places came to study Gheels humane system of care for the mentally ill.

Fact is, if we had more such concern there would be fewer isolated and unstable young men running about shooting up the place. But the 'hands-off-none-of-my-business' mentality allows these boys/young men to destabilize to the breaking point.

Anyway, yeah, that's why Dymphna is my avatar. Besides, we're both Irish and another besides, I worked with the mentally ill before I had to quit doing stuff.

Anonymous said...

Dymphna, the rhythms of life are inexorable and inevitable. They come to us all, to each of us in their own way in the due course of time.

They come without malice or consideration, with total impartiality, different unto each of us but come they do.

I know that man, your life partner Ned, we have talked and written to each other over so many years and I know know the depth of the love he holds for you and also of the of the love and support that your faith and your faith community gives to you both, and I do envy you that.

Hang in there girl, we, the Old Guard, balls and all, are the only thing our children can actually hope to rely upon.

Seneca III.

P.S. And my love as well, for what it may be worth. XXX

Findalis said...

All that really matters is your health and good cheer. You will write what you can write. And with the help of G-d you will overcome this trial too.

I will remember you in my prayers. Remember there is one healer who is greater than every doctor on Earth. Put your trust in Him.

Bill said...

Hiya Dymphna,
I realize that you've probably tried everything to relieve your illness and that must be very frustrating and disheartening for you.
Have you tried going totally grain free for an extended time?
I started out going towards a paleo type diet and then I've settled on an archevore.com lifestyle. It took 3 years to resolve my joint problems and alopecia areata.
You've probably already been down this path, but if not, I hope you will try it.
I have had absolutely no grains or processed foods and I bekieve that this elimination can resolve many problems.
Best regards,
Bill.

Dymphna said...

thanks Bill. No grains, no legumes, no sugarincluding fruit or lactose, mostly no tubers, few nightshade family foods (tomatoes, peppers, etc) though I do indulge in those sometimes.

Soy: only fermented w/o wheat.

Oils and fats: meat fats, butter, cream, coconut, avocado (whole thing, not pressed), olive.

I eat some fermented food everyday and have been eating more organ meats. What the B calls the nasty bits. I did meet a farmer recently who told me he'd save the offal for me since otherwise he threw them away...what a waste of a fine tongue or kidney.

Will eat wild caught salmon - canned variety because it's much cheaper. And eggs. Sardines, since like us they're low on the food chain ;-)

Low carb veggies like cabbage, cauliflower, and such. But it's expensive to eat that way.

Did find some fennel bulbs on sale recently. Yum. I sliced and baked with with garlic, cheese, grape tomatoes and olives.

When I feel well, we eat well. Otherwise Da B grabs sticks of string cheese or the peanut butter jar.

Anonymous said...

I just read your post and it hit me that my wife has had similar, unexplainable (in Japan) symptoms for four years now. One of my duties, when I am around, is to accupressure the area around her shoulder blades where she experiences constant, piercing pain. I didn't know until a couple days ago, for the Japanese are intensely uncommunicative about such things, that she has numb fingers and can hardly lift anything heavier than a pound.

I bench-press more than my bodyweight, still, when I am much closer to the Exit than to the Entrance, she is 11 years younger, so all this has been totally incomprehenible to me. Now I am beginning to make sense of it. So if we find something that works for my wife, I'll let you know.

BTW, you have to avail yourself of the benefit of pickles. Not the store-bought kind but the real thing. Read up on the Korean kimchi, or the Japanese pickled takuan, or how real pickled cucumbers and pickled cabbage (sauerkraut) are made in Central Europe. All these can be made at home with little more than sea salt and some pressure (e.g. a stone on a plate) in a ceramic crock. The richness of the enzymes this produces could not be reproduced if the resources of the top Pharma-5 were pooled.
Takuan Seiyo

Loren said...

http://www.iadvocatehealth.org/protozoal_infection0.aspx

Here's something I found a while back, not sure about the business model they talk about, but it might serve as a good place to start some research that might help.

Dymphna said...

Takuan--

You might consider getting the Fibomyalgia and Pressure point manual by Dr. Devin Starlynl:

Fibromyalgia and Chronic Myofascial Pain: A Survival Manual (2nd Edition)

It will be too heavy for her to lift, but you can get it down and let her look at the info. The parts of referred pain are very helpful. For example, the extreme pain I feel on occasion around the trochanter is really referred from a muscle further out (i forget which one).

For many of us, there are what I call moveable feasts: geloid-like lumps that can be felt under the skin one day only to disappear and emerge somewhere else. The most persistent of them, for me, are the small ones that emerge from the tendon at the bottom of the calf and run all the way down to the heel.

Fatigue is a constant companion and one tends to spend time chastising oneself for being lazy. After all, we don't "look" sick, I "just need to_____________". Fill in the blank with whatever activity that was once loved and effortless. I remember the poignant and deep sadness of a woman who had to give up her passions: piloting planes and playing "stride piano" (i.e.,, where the fingers cover over an octave each, maybe ten keys).

Yes, I do eat fermented vegetables. There are some good ones available here, esp. organic sauerkraut. Bubbie's is one brand.

I tried making my own - not so good. I need an off-gassing top to do it correctly. So for the time being I'll stick to the brands I know.

I also make my own kefir. No sugar in the homemade versions but I've ended up with having to devise kefir cheese when I forget & let it sit out too long. FM causes horrible memory lapses. My favorite doc sez it has one's hippocampus firmly tied down...

I'm lucky; I can walk unaided. I know young women who are using canes and walkers.

Anonymous said...

Have you been tested for the genetic disorder Sjogren's syndrome types 1 and 2?? It is an autoimmune disease with many of the same syptoms you describe.

Mayo clinic diagnosed me over 9 years ago and thought at first I had the ailment you describe. I am now unable to walk unassisted without a walker or sometimes time I am in a wheelchair when a really bad flare-up happens.

Anonymous said...

I do so appreciate everything you and the Baron do and I am beginning to appreciate just how hard your lives are...and how strong your faith is. You two are an ispiration, I feel like a weakling with my styes, cataracts and glaucoma, maybe MD. Perhaps that's why I madly read, 3 books this weekend, afraid I might not be able to. I love the name you chose. I was at a book sale last year and the librarian said, you like mysteries, would you like this whole box for $5.? It was the complete set of the Brother Cadfael mysteries and I said to my family, leave me alone, I am reading. I read the 20 books from Nov-Jan and may possibly reread them. Not only is their my beloved mystery and botannical information, but also very Christian values by the author Ellis Peters. Everything about all of these books reminds me of you and the Baron. Thanks for being there.