Fibrobnoxious

The following article (slightly shortened) was posted on a fibromyalgia website I belong to, which I will not mention because I bitch about things there that I won't say here. And vice versa.
But, I am trying to become more evolved and less cave-dweller. Also, it has come to my attention that the understanding of others means a lot to me- whether I know the others or not.
I was very gratified recently when Cousin Joel put himself in my shoes to acknowledged the challenges I face. A little empathy goes a long way.
The yiddish word is rachmunes. (The way I throw these words around, you'd think I knew what I was saying)

So, this article is a composite of letters, I cannot vouch for the accuracy of the facts, such as they are. But I relate totally to the many people speaking with one fibrobnoxious voice.

Fibromyalgia for non- Fibromites

WHAT YOU SHOULD KNOW ABOUT ME

1. My pain - My pain is not your pain. It is not caused by inflammation. Taking your arthritis medication will not help me. I can not work my pain out or shake it off. It is not even a pain that stays put. Today it is in my shoulder, but tomorrow it may be in my foot or gone. My pain is believed to be caused by improper signals sent to the brain, possibly due to sleep disorders. It is not well understood, but it is real.

2. My fatigue - I am not merely tired. I am often in a severe state of exhaustion. I may want to participate in physical activities, but I can't. Please do not take this personally. If you saw me shopping in the mall yesterday, but I can't help you with yard work today, it isn't because I don't want to. I am, most likely, paying the price for stressing my muscles beyond their capability.

3. My forgetfulness - Those of us who suffer from it call it fibrofog. I may not remember your name, but I do remember you. I may not remember what I promised to do for you, even though you told me just seconds ago. My problem has nothing to do with my age but may be related to sleep deprivation. I do not have a selective memory. On some days, I just don't have any short-term memory at all.

4. My clumsiness - If I step on your toes or run into you five times in a crowd, I am not purposely targeting you. I do not have the muscle control for that. If you are behind me on the stairs, please be patient. These days, I take life and stairwells one step at a time.

5. My sensitivities - I just can't stand it! "It" could be any number of things: bright sunlight, loud or high-pitched noises, odors. FMS has been called the "aggravating everything disorder." So don't make me open the drapes or listen to your child scream. I really can't stand it.

6. My intolerance - I can't stand heat, either. Or humidity. If I am a man, I sweat...profusely. If I am a lady, I perspire. Both are equally embarrassing, so please don't feel compelled to point this shortcoming out to me. I know. And don't be surprised if I shake uncontrollably when it's cold. I don't tolerate cold, either. My internal thermostat is broken, and nobody knows how to fix it.

7. My depression - Yes, there are days when I would rather stay in bed or in the house or die. I have lost count of how many of Dr. Kevorkian's patients suffered from FMS as well as other related illnesses. Severe, unrelenting pain can cause depression. Your sincere concern and understanding can pull me back from the brink. Your snide remarks can tip me over the edge.

8. My stress - My body does not handle stress well. If I have to give up my job, work part time, or handle my responsibilities from home, I'm not lazy. Everyday stresses make my symptoms worse and can incapacitate me completely.

9. My weight - I may be fat or I may be skinny. Either way, it is not by choice. My body is not your body. My appestat is broken, and nobody can tell me how to fix it.

10. My need for therapy - If I get a massage every week, don't envy me. My massage is not your massage. Consider how a massage would feel if that charley horse you had in your leg last week was all over your body. Massaging it out was very painful, but it had to be done. My body is knot-filled. If I can stand the pain, regular massage can help, at least temporarily.

11. My good days - If you see me smiling and functioning normally, don't assume I am well or that I have been cured. I suffer from a chronic pain and fatigue illness with no cure. I can have my good days or weeks or even months. In fact, the good days are what keep me going.

12. My uniqueness - Even those who suffer from FMS are not alike. That means I may not have all of the problems mentioned above. I do have pain above and below the waist and on both sides of my body which has lasted for a very long time. I may have migraines or hip pain or shoulder pain or knee pain, but I do not have exactly the same pain as anyone else.

Author's note: This letter is based on communications with people throughout the world, males and females, who suffer from fibromyalgia. It does not represent any one of the over 10,000,000 people with FMS, but it can help the healthy person understand how devastating this illness can be. Please do not take these people and their pain lightly. You wouldn't want to spend even a day in their shoes...or their bodies.

Author unknown......

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Spring, tra la

Beautiful 1st day of spring today! We saw robins and crocus and all that vernal stuff. Doggie and I walked to the park- the 12' crust of ice over the lake is all melted!
As we crossed the bridle path we came upon some pony-pies which Caramel stopped to smell. That's fair, thought I, it's her job.
She then stuck her face in it and through her whole self over and into it.
It was my job to wash both her and her stinky coat and collar.
It's good luck, right? Or does one need to step in it to garner lucky results?
Oh my. I have not been posting cause, quite frankly, I have been stupid, useless, unimaginative, slightly depressed and have had difficulty cobbling two words together. Winter is a dark and painful time for me and I have the impulse to bitch frequently but I'd rather not.
In an unfortunate scheduling mix-up, I saw my GP last Mon, the rheumy on Tues and the sleep doc on Wed when I had my sleep study (I will report back with results). One positive- all three docs are familiar with FM and are understanding about it which means a lot in terms of confidence and support.
My rheumy (who has Fibro herself), was inconclusive about my blood tests re: Sjogren's or Lupus. We'll see. She prescribed Fiuricet (sp?) for the migraines and it seems to help, so far. At least the one time I took it did. I really resent having to take all these pills.
Steve is doing better and the doc was pleased with the results from the Enbrel he is taking.
In the course of the exam, we talked dogs. Unbelievably, her dog has a collapsed trachea as well as lupus and needs a slew of pills every day. Damn!
In other news, we finally sold my Mom's house, 2 years after her death. What a relief. The new owner is nice and has 2 small boys. My Mom would be pleased- me and Bro certainly are.
And, as my Cousin Shelly used to say, like that.

Thursdays in the Park with Sheila

On Wednesday, the gorgeous and sunny day, Caramel and I walked to the Park unaware of the danger lurking within. It pains me greatly to say, but I must report our first Bad-Dog incident. The lake is still frozen but there was a deep water-filled sinkhole by the path where some water birds were bathing. As we came around the bend Caramel saw 2 swans a-swimming and off she went in pursuit. I was caught totally unaware as she yanked the leash from my hand. She did not stop when I yelled "stop" which she normally does. Into the water and across the bridle path (3 feet deep with mud from the melting snow) she chased the swans until hissing and screaming, they flew away (thankfully!). We were both soaked and covered in mud. My throat hurt from yelling. I had to wash both her and her filthy pink jacket. Bad dog! She was appropriately contrite but I need to be more vigilant with her in the park re: Cats, squirrels and swans. Luckily it was a victim-less incident, unlike the unfortunate accident that transpired yesterday. My dear, innocent friend Sheila and I have a weekly date. We walk the dog, have lunch and generally fotz around.
We were walking on the transverse when a woman came towards us giving Caramel the bad eye. Because I am a considerate dog owner and realize that not everyone loves dogs, I pull her leash in short around questionable persons.(Her leash is an extendable 16" Flexi which rolls up into a hard plastic case that is also the handle.) As I pulled up on the handle to draw the leash in, I clocked poor Sheila on the mouth. She started bleeding and swelled up immediately. Luckily her teeth weren't hurt. She is OK but it scared the hell out of me.
Later she said: I don't know what I said but just don't hit me again!
We are all going out to dinner tonight to celebrate her 62nd birthday.
I will try to show some restraint.