Wednesday, October 29, 2008

What FM and CFS Mean for Me, Personally

On the sidebar to your right you will see links to sites explaining exactly what FM and CFS/CFIDS/ME are. You'll probably see a whole laundry list of symptoms. Not everyone has all of them, and the ones that are required for a diagnosis will even vary in degrees. So I thought a good place to start would be to elaborate on what these diagnoses mean to ME personally.

Fibromyalgia

I consider myself lucky here. The main symptom of FM is pain. Thankfully, mine is not constant or as severe as some. Mine seems to come in flares. Sometimes it's my whole body. But usually it's a certain body part that acts up for a period of time, sometimes a day, sometimes months.

FM Symptoms

Pain

Comes and Goes
Neck/Trapezius Region
Hands/Wrists
Ribs
Lower Back
Knees (prone to tendonitis)
Bottoms of Thighs
Feet
Whole Body Aches
Vague Discomfort

Fatigue

Waxes and Wanes
Varies from:
Wake up dying for more sleep or feeling groggy/weak/dizzy
Low Stamina (Get tired easily, within hours of awaking)
Exhausted but can't relax
Complete lack of energy - Holding myself up in a sitting position takes effort

Muscle tension


CFS

See above, plus:

Fluish body aches and malaise (Feeling like I'm getting the flu)
Swollen glands
Swollen Lymph nodes

Dysautonomia:
POTS
Low Blood Pressure
Pounding or racing heart
Inability to hold electrolytes
Chest pain
Feeling of forgetting to breathe, or breathing takes great effort
Inability to stay upright for long periods of time (standing/sitting) (POTS)
Neurally Mediated Hypotension
Problems regulating body temperature - Overheating/Hot Flashes

Others:

Subclinical Hypoglycemia
Balance problems/Clumsiness
New Allergies/Asthma

Moderate to Severe Cognitive Dysfunction, including:
Memory Problems
Inability to recognize people's faces I don't know well
Word-finding problems
Forgetting what I was saying, or going to do
Disorientation
Trouble following verbal directions
Problems focusing and blocking out distractions
Inability to multi-task effectively

How does this affect my life?

In many ways, as you can imagine. I can't hold a regular, even part-time job. Even school, at this point, has become very difficult. (Though I'm learning that if you are up-front and honest, and keep the lines of communication open, anything is possible. Easier said than done...I don't like feeling like I'm using my illness to get special consideration, but if it well help me finally get that degree...For now I think maybe I just need to rest for a bit.)
My symptoms are unpredictable and can change quickly. One day, I might feel pretty close to normal, the next I might have to lie down most of the day. One week, I might be just fine in the mornings, then for the next month, I may be slower, stiffer, more tired...and if I try and push myself to hard too early, I trigger more symptoms. Then, sitting up for a couple of hours, doing nothing, is about the only chance I have at being able to accomplish something in the afternoon. It's like my body has to adjust to being upright or something...

It's hard to make plans, social, or otherwise. I usually have to rest and save up my energy when I have a social engagement.

Many times I don't feel like talking on the phone, because I'm tired, and that aggravates the cognitive dysfunction (dubbed "brain fog" or just "fog" by many of us with FM/CFS) and I might have trouble putting together a sentence, finding words, space out in the middle of a thought, or end up just being plain tactless, which I'm trying to learn not to be mortified about. Again, something I'm trying to work through and overcome. Part of it is self-consciousness, I guess.

Sometimes, I may get very overwhelmed, and end up blocking out everything but the bare necessities of getting by. I'm working on this though. (I think all the stress I've been under the last couple of years, on top of being sick, has pretty much made pieces out of my ability to deal with stress well; I've been told I have slight adrenal problems too, and supplements I've taken definitely help, so that might be part of the reason.)

When I list it all out like this, it really puts things into perspective, and makes me think maybe I should be a little kinder to myself. I've really spent so much time feeling guilty and feeling like I'm not handling things well enough, like if I just tried harder I could "pull off normal", that somehow it's my fault that I ended up I this mess...
I think about all the movies, shows, and books I've read, even before I got ill, about people being so brave and graceful, even successful, despite their disabilities...and that doesn't help. But I have to remind myself. That's not real life. It's either fiction, or just a narrow glimpse into their lives. Also, I think if you grow up with a disability or illness, I think it's different. You learn your limitations and how to deal with them, you don't expect things that are impossible for you. To reach the age of 23, believing that anything is yours for the taking if you just work hard enough and are smart about things, and then have that all taken away, to have to change your whole outlook on life, who you are, learn that you have limitations, and force yourself to learn to ask for help, well, that's a pretty huge task.

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