But I’ve been through worse with Fibro. I have had flares that were so severe I was practically bedridden for weeks. Only to have people say something like, “But you don’t look sick.”
On a good day I’ll reply with, “Well, at least I’ve still got my looks.” On a bad day I want to shoot back with, “Yeah, well you don’t look like an idiot, but you sure just proved you can’t always go by looks.”
Yep, Fibro can make me bitchy.
The main symptom of Fibromyalgia is pain. It’s a chronic, intense pain that can appear anywhere in the body. Or everywhere. It has been described as a deep muscular ache, throbbing, stabbing, shooting, you name it. Muscles can twitch and jump. There may be complaints of numbness, tingling and burning. Muscle stiffness may be present and is usually quite pronounced early in the morning, making it difficult to “rise and shine.”
The pain can come on gradually or flare suddenly thanks to stress, fatigue, anxiety, physical activity, and even the weather.
Our bodies have 18 tender points, and the old diagnostic criteria said 11 of the 18 had to be positive for pain in order to render a diagnosis of Fibromyalgia. I’m usually positive in all 18. Sometimes just touching one of my trigger points can send waves of pain shooting throughout my body.
There are days when I’m miserable and all I want is a hug, but a hug hurts. It can lead to enormous pain, even a flare. Can you imagine that? Can you understand what It’s like when your child’s hug sends jagged shards of pain rushing throughout your entire body?
But wait… there’s more…
Yep, the pain isn’t enough. We’ve got more. How about fatigue? And I’m not talking about coming home tired after a long day. I’m talking about fatigue so severe that you can’t function. It’s an exhaustion so profound that it disrupts your life. It prevents you from working, socializing, even just functioning.
Combine that fatigue with pain and stiffness, and you have coordination issues. In my case, I find myself falling quite often. I’ve had quite a few close-up examinations of carpeting before, and they weren’t by choice.
Most with Fibro are also lucky enough to have sleep disorders. The most common disorder among Fibro folks is an abnormality in Stage 4 sleep. Bursts of awake-like brain activity cause Fibro folks to wake up numerous times throughout the night, preventing the deep, restorative sleep the body needs. And guess what that results in? If you said “pain and fatigue” then you win the prize!
Me, I seem to be a bit of an over-achiever when it comes to health problems. I have three sleep disorders. Oh yeah, one just ain’t enough. I got the hat trick.
But wait…
Try these on: irritable bowel and bladder, headaches , migraines, restless legs syndrome, periodic limb movement disorder (which includes restless leg), impaired memory and concentration, skin sensitivities and rashes, dry eyes and mouth, anxiety, depression, ringing in the ears, dizziness, vision problems, Raynaud's Syndrome, neurological symptoms, and more. So much more.
How’s that for a bonus?
Yeah, I may not look sick, but I feel like hell most days.
Wait a minute… did I forget to mention Fibro fog?
I remember going to a doctor once and sitting there frustrated to the point of tears because I couldn’t describe what was going on in my head. Well, I could describe it, but I couldn’t make that doctor understand. I couldn’t get across what it was like to have to search my brain for a word, to forget my sons’ names, to get lost on my way to work because I forgot where to turn. I wasn’t talking about going to the store and forgetting an item on the grocery list. I was talking about such extreme things as forgetting how to spell my own name.
I told the doctor that I knew all of that information was in my brain, but finding it was like searching through an extremely heavy fog, a real pea soup kind of fog that you need a machete to get through. When I heard a few years later that this type of cognitive malfunction was known as Fibro fog, I laughed. Fog was how I had described it for years.
Fibro has strained almost every relationship I’ve ever had. I don’t want it to, but it does. Friends invite me places, and I tell them I’ll try to be there. I want to be there, but my body doesn’t always cooperate. Sometimes the fatigue hits my eye muscles so that I can’t focus. If I can’t focus I can’t drive, and that means I’m staying home. Headaches, IBS, pain -– they can’t be predicted. I can only hope they won’t show up on a day when I’ve got plans, and I can only hope my friends will understand if they do.
So how do I cope? Well, I have good days, and I try to make the most of those. That’s when I try to clean my dirty trailer, and goodness knows it needs it. I try to run my errands, play with the dogs, all of those physical things I can’t do most days. I just have to be careful not to overdo it. Overdoing is bad and can knock me flat on my back with a flare.
And flares are bad. They can last 6 hours, 6 days, 6 weeks or 6 months. The summer I was diagnosed was the summer I lived through a very severe 16-week flare. It was brutal.
I have other coping techniques. I take a lovely cocktail of drugs. I can’t function without them. I stretch in the shower because the hot water helps loosen up the muscles. Hot soaks in the tub with some lovely bath salts, muscle rubs, aromatherapy, massages, naps, walking when I’m able, using a cane when I need it –- they all help.
But there are still times when it takes all I’ve got just to get through the day. My skin is so sensitive that just wearing certain fabrics next to it can set off a flare. I can’t see or think straight. My stomach is a mess. I come complete with twitching muscles and a foggy brain. I just hang on because I know I’ll have a good day soon. I live for the good days.
The best coping tool I have though is my attitude. Yep, I have been blessed with Fibro, but at least I’m alive and kicking, able to enjoy time, on my good days, with my sons, family, and friends. When my legs are restless I say they’re dancing to a tune only I can hear. When the periodic limb movement has my ear moving down to my shoulder or my arms flailing about I just tell folks I’m doing an interpretive piece –- my personal tribute to My Left Foot. If I can’t remember which son is which or I’m calling one of them by the dog’s name, I’m sure to point out that the important thing is for them to know who they are.
Besides, I’ve been through worse than this. Heck, I had a stroke and open–heart surgery before I turned 40. In fact, I got to spend my 40th birthday in the hospital, hooked up to all sorts of monitors and things that go beep, with tubes coming out of my chest, neck and other places they shouldn't and that I won't mention. But that’s a story for another blog post.
Yep, I’ve been through worse than this.
Now if I can just remember where I put the muscle rub…
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