What it is like to have an Adult Child with Fibromyalgia
When I started my website I forewarned my parents that I’d like them to write a little something about how they have felt having an adult child with fibromyalgia. I think hearing different perspectives are good for everyone. Below are some of my mom’s thoughts. Soon I will have my dad’s thoughts as well.
Like all parents, we are so very, very proud of Felicia. We love her dearly. Yes, she’s the apple of our eyes – and The Helpful Hubby is the best son-in-law any parents could have. Well enough of the good stuff – now for the unexpected. Felicia has handled fibromyalgia better than I thought was humanly possible. Maybe receiving the diagnosis when a busy student at a large university is the time to get the crummy news. She couldn’t stop, she didn’t have too much time to reflect, and those papers and exams were always calling for attention. (I’m sure not a minute was wasted.)
Felicia’s diagnosis took about a year. She had not kept us “up to speed” about the number of different doctors but in an efficient fashion, we got the explanation, “don’t worry, don’t come up, there’s no cure.” Anger and fear weren’t really my feelings, more: sadness for my “baby,” “Ick, how can I help Felicia, maybe it’ll go away if it’s sort of a chemical imbalance.”
Mainly I wondered about her ability to conquer her courses and what, if any, adjustments the university would/could make. I wondered if she would get so bad that she would be confined to a bed. Then Felicia brought home a fairly technical book. I read most of it. She’s been bringing home reading material ever since. I’m not quite so ignorant about fibromyalgia now.
We still really want to help Felicia but, that is hard to do, especially with her living out of state. Always my first instinct is to wrap my arms around her and just hug tightly for a really long time—maybe hours. Well, with fibro, that’s not a warm, cozy feeling for her to say the least. I can’t say, “It’ll get better,” because it may get worse before it gets better. I want to bake goodies, but know I’ll be chastised because she’s trying to eat nutritiously. Since I live far away, I can’t run over and do the laundry or dusting. She’d probably love it if I’d fly out for seasonal gardening though. I’d like to baby her in many ways, but that doesn’t make her fibromyalgia get better, it doesn’t help Felicia deal with life better, it just makes Mom feel better.
Felicia, my husband, and I talk frequently. Felicia and her father have a very special, loving relationship. Mostly I whisper little prayers throughout the day. We try to support both her and The Helpful Hubby in any way we can from a long distance.
Generally when I see or talk with Felicia, the first thing I do is figure out if it is a good or bad day. When I can visit her, usually her general posture or eyes tell me, but sometimes it’s the braces, compresses, or verbal warning of, “don’t touch me.”
I hated during my pregnancy when everyone else thought it was the only topic to talk about. So, if Felicia wants to talk about fibromyalgia, I’ll talk, but I don’t make it the core of every conversation. Felicia is so much more than this condition. She is a vibrant, interesting, creative, intelligent, compassionate, and humorous woman who happens to be dealing with a lot of pain.
The major way I see her coping with fibromyalgia is through determination. If she says she is going to do something, it will be done. It will be on time and correct, and with bells and whistles, when appropriate. She has been the family organizer since age 4.
She tries to stay positive. It drives her crazy when people don’t even try to be pleasant when dealing with the public. Felicia is not one of those obnoxious cheery people. She wakes grumpy, gets headaches, has fibromyalgia; but she looks for ways to make things better, she doesn’t dwell on the spilt milk in life, and somewhere she has learned to make lemonade from the lemons life gives her.
Felicia monitors her activities. She is a really good planner. She will space steps out so that everything isn’t left until the last minute. Although she deals well with crisis, she hates being put in that position due to others poorly made plans.
Felicia uses tools that help make household chores easier. One, not-so-obvious “tool,” is being organized. She claims that everything in her house as its own “home.” She can tell someone exactly where to find almost any item in her house. This is helpful for others when they are trying to help her – no need to search around for items or feel badly asking where something is.
She researches fibromyalgia, reads books and articles, searches on-line, and learns continually. She is active in local groups, and of course she started her website and tweets. She really believes in a place for positive examples of people living with fibromyalgia. She hopes to be a banner of information for most, a shared moment for many, and a ray of hope for some. As her mother, I want her to succeed. As a person, I want you to succeed too. May this find you making progress which will lead to your good day.”
About Felicia: “I’d like to think that everything that I do in life is done with passion. To me it’s not worth doing something if you don’t believe whole-heartedly in it! I enjoy photography, flowers, baking, traveling and bicycling and am an active volunteer with my local Arthritis Foundation office. Everyone who knows me also knows my favorite color is purple. I started my Felicia Fibroblog in hopes that I would be able to create a community where people with fibromyalgia and other medical conditions relate. I planned to share resources I have found to be helpful as well as my own personal tips and tricks. I am lucky enough to know a few other ladies with fibromyalgia and will sometimes share their experiences as well.”
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