Today is Fibromyalgia Awareness Day. You’ve probably heard about fibromyalgia, but maybe you don’t know exactly what it is. Even if you don’t know it, chances are good someone in your life battles fibromyalgia; it is prevalent in about 3-6% of the population.
What is Fibromyalgia?
Fibromyalgia is a disorder that causes widespread muscle pain and chronic, extreme fatigue. People with fibromyalgia also have painful “tender points” on the body in specific places on the neck, shoulders, back, hips, arms, and legs.
Other symptoms include:
- Trouble sleeping
- Morning stiffness
- Painful menstrual periods
- Tingling or numbness in hands and feet
- Increased sensitivity to heat, light, sound and smells
- Problems with concentration and memory (called “fibro fog”)
There are a smorgasbord of other symptoms and co-morbid (overlapping) conditions, including jaw pain/TMJ, bowel disfunction, carpal tunnel syndrome, restless leg syndrome, anxiety and depression.
If you think back to the last time you had a bad flu, that sore all over deep muscle pain and extreme fatigue, that’s the feeling that many with fibromyalgia live with every day.
Living with Fibromyalgia
Life with fibro is unpredictable. The pain and other symptoms are inconsistant and come in “flares” that may last hours, days, weeks or longer. And although many people have certain triggers, like weather, sometimes there is just no rhyme or reason to it. In day-to-day life that makes us very unreliable. It’s hard to hold down a job when you never know if you’re going to be able to walk or drive or even sit. It’s hard to maintain social relationships when you can’t commit to events that are too far off, or you cancel plans at the last minute because you don’t feel well enough to go out. Not surprisingly, many people with fibro also battle depression, due in part to social isolation, financial strains and the difficulties that come with battling an invisible illness.
I know in my personal experience, dealing with chronic pain and fatigue sometimes makes me cranky and irritable. It’s exhausting, miserable work dealing with pain all the time. I have mood swings I’ve never had before, and I get easily frustrated. Combine that with fibro fog, and really it’s no wonder I get cranky. I hate being tired, confused and forgetful. As someone who used to excel in a busy, multitasking work environment, it’s extremely frustrating to find simple tasks confusing or forget basic things like my phone number or child’s date of birth. Sometimes this makes me not too pleasant to be around, I’m sure.
I sleep. A lot. It’s not unusual for me to sleep 9, 10 or even 14 hours if I have the opportunity. And it’s never enough. Sometimes I resent the number of hours in the day that are lost to sleeping.
I personally really suffer from morning stiffness, making it difficult for me to be the “get up and go” morning person I’m used to being. Some days it can take me as little as 15 minutes to get going, other days it can be up to a few hours. Even after two years I still wake up most mornings forgetting I have this particular symptom, and jump out of bed only to stumble and/or fall flat on my face. It’s quite the rude reminder to start the day off with.
Parenting with Fibromyalgia
Fibro has changed the way I parent in many ways. I can no longer be the “do it all” Mom that does playgroups and activities every day, and lots of crafts and keeps a spotless house. I’ve had to adopt a more laissez fair approach that means not making a lot of plans or keeping a lot of commitments, and taking it more one day at a time. I’ve learned to let go of the housekeeping a little (only a little, I’m aiming for more) and to make the most of days I’m feeling well. My older children, especially my eldest, are invaluable assistants to me and I try to see the upside to their learning valuable life skills instead of feeling guilty over how much I ask of them some days. I’m going to have some very appreciative daughters-in-law one day, I’ll tell you that.
I’ve finally (mostly) quit mourning the loss of the Mom I Used To Bed and try to make the most of things the way they are. If I can’t get out of bed or off the couch, that means extra stories and cuddle time with my little ones. We play a lot of board games and card games, and spend a lot of very simple family time together instead. Gone are the days when I used to take the babies for a two or three hour walk; instead we spend many mornings in the backyard where I can alternate between playing with them and sitting down. And although the kids don’t do as many formal activities, we keep busy on my good days with neighbourhood play dates, local outings and other activities. It was a long journey to realize that I could still be a Good Mom, just in a different way.
One of the biggest blessings to me through all of these (besides Jeffrey, but that’s another post in itself) has been the incredible online community I’m surrounded by. My friends on Twitter and Facebook have been invaluable in maintaining my sanity and sense of self. Whether I’m in the backyard, on the go, on the couch or in bed, I’m always connected to friends new and old. I’ve found people I can relate to in ways I’ve never thought possible, and people who are just fun to be around and make me feel good. Even discussing the mundane with old friends on Facebook makes me feel less isolated when I can’t get out. I am so grateful to all of you.
What you can do
If you have someone in your life with fibromyalgia – whether it’s me or someone else – here are some suggestions for relating to them, helping them and understanding them:
- Read up on fibromyalgia on reputable sites and read The Spoon Theory (everyone with a chronic illness knows The Spoon Theory)
- Visit often, but be an easy guest. Offer to bring food, a game or a movie.
- Ask “Is there anything I can pick up for you?” before you come over
- Keep inviting the person out, even though the answer may often be no. Keep asking! There will be times when the answer is yes, and those times will be great!
- Pass along any magazines, books, movies or games you are done with. We spend a lot of time on the couch or in bed and any entertainment is appreciated.
- If you go out somewhere, offer to drop them off at the door while you park. Hold open doors, and take the elevator instead of the stairs. Outings can be exhausting, even on a good day.
- Stay connected online: if the person can’t make it out to social events as often as they’d like, chat with them on Facebook or instant messenger. Maintaining social relationships helps fend off feelings of isolation and depression
And remember, I’m still me! I may have fibromyalgia, but I don’t let it define me. I appreciate when you ask how I’m feeling, but some days I don’t want to talk about it. And some days, I’d much rather just talk about you and forget about me for a while. And on the good days, I’d rather talk about everything else I have going on, because I’ve got a helluva lot else going in my life! And it’s those days that get me through.
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