Back in 1997 Dr. Lehman diagnosed me as suffering from fibromyalgia. Back in my early years out of tech school I had a heck of a time with pain and fatigue and missed way too many work days. In the years since my two younger boys were born I had noticed a lot less of the kind of pain that sent me to Dr. Lehman and other symptoms come up and fade out. I thought that perhaps he had misdiagnosed me. It just recently occurred to me the change in the pain and fatigue probably has more to do with the fact that I am not trying to keep up with an office life and those outside pressures. Less stress, less pain. The doctors said that right from the beginning. What brought FM back into my mind was a post on Facebook by a friend of mine.
"XXXXXXXXXXXXXX shared Living Strong's status.
For my friends to understand me a bit better.
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. (Thankfully this hasn't been a problem for me for a long time now.)
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. 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.
I hope that this helps you understand me, but if you still doubt my pain, your local bookstore, library and the internet have many good books and articles on fibromyalgia.
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."
It really spoke to what goes on in my daily life, especially number 11. You have good spells and bad spells and you never know when one will end and the other will start.
The other thing that has been really hitting me is number 3. I have been dealing a few weeks (months?) with this. It's more than just forgetfulness. I've been so easily distracted lately....I have had the same load of laundry in the washer since Sunday! I keep getting distracted away from the washer and forget it's there and have to rewash it. Then I forget it again! I have washed that same load 3 times already and now I just started the 4th time. I pray to God I get it in the dryer this time. And remember to start the dryer...that has become a classic for me lately.
The house right now looks as jumbled and cluttered as my mind is. There is the pile of good will donations, and stuff from the kids closet and clean laundry and painting stuff and sewing stuff, pet food jars, toys...all jumbled around and that's just the front room. The kitchen is an endless conveyor of dirty dishes, recycling and incoming mail. There are overflowing hampers in the bed rooms. I start to come up with a plan and then in no time the plan evaporates and I am left with the same or even bigger mess than I started with. Lately it all just seems like a swirling gyre that I am supposed to catch and unswirl. Unfortunately I am also trying to swim in that same gyre I am trying to capture and subdue. I am so glad that my MIL hires that housekeeper to come help twice a month. I would probably be an episode of Hoarders without that help.
There is also a hint of confusion sprinkled on top of the forgetfulness and distractibility. There are times when I am driving around town when I start to feel unsure about the route I am taking. Things can sometimes feel familiar and alien at the same time. It's mild but that bit of disorientation is occasionally there.
All that said, the mental issues come and go like the physical ones do. Hopefully the fog will clear soon and I will get some mental clarity back. Until then please bear with me and my disorderly home and mind. I am still in here.
What do you know? I finished it on the same day I started it. :)