Yesterday, I went to my first ever Fibromyalgia Support Group. I had been looking for a group for years and although there were a couple of hospital based groups that sounded okay and I did find 1 support friend through another half-hearted attempt at a group, it is only now that I’ve found a group that has a plethora of active members.
The Upsides:
Everyone in the group knew exactly what I was going through. They understood the sleep issues, the pain issues and finding a doctor issues. It was so much fun being able to talk about medicines, treatment plans and symptoms without someone going “What is that?” or “I have no idea how you feel,” or “Why would you try that medications?”
I noticed that almost half the group relied on walking sticks and about 75% of the group was overweight thanks to their fibromyalgia symptoms OR because of their various medications. Us fat girls all agreed on one thing – we didn’t start out this fat!!! One woman who was diagnosed was an avid cyclist, cycling up to 14 miles per day!
Every women was very accomplished in her own right. Many were working mothers with families to support, or retired working moms. One woman was an ER nurse (formerly), one woman worked in Real Estate (formerly) one in finances (formerly).
Once our conversation really got going, we did a great deal of chatting about remedies, the ridiculous side-effects of Lyrica, why we aren’t always crazy (although we are sometimes depressed).
In general, it felt great to be part of a we.
The Downsides:
Almost everyone was older than me. Although fibromyalgia does affect older women more often (or older women are diagnosed) I know there are young gals like myself out there (under 40 crowd) that also suffer from fibromyalgia. However, there is a benefit to this too, which is that each woman had a number of experiences that I could learn from. But, along with fibromyalgia came other issues that sometimes come with age that I couldn’t quite understand. But what an insight! I realized that it is okay to say yes to walking sticks if I need it and not to be so darned embarrassed. And not to be embarrassed by using those little motorized cars in the grocery stores and even (as one woman recounted) at places like Disneyland. Where I had viewed this for so long as being a weakness – the women using these tools assured me that it makes for a much more enjoyable holiday with family and for a more upbeat shopper than the morose person I usually am in grocery stores.
But because the women were a bit older, I felt hesitant to ask them to exchange phone numbers for those days when I really needed someone to come over to help me out. I have read stories and blogs online of girlfriends with fibro that will care for one anothers kids or household while the other is stuck in bed. I don’t have these crazy days as much anymore thanks to a lot of reframing my state of mind, pain pills (thank you Lord!…and my doctor), and other pain management techniques and medicines, but about once a month I am pretty close to a nervous break down because of my intense pain.
Those are usually the days I call my husband in desperation to come home from work, or just tell him that I really can’t get out of bed.
And, as many of these gals are past the child that needs you at home stage – the meetings are during the day and are often at locations that are not the kid friendliest. So, I’ve got to get on finding that occasional daytime babysitter, bring him with me occasionally, or just have my husband resign to come home for a two-hour lunch (which will eat his vacation time) so I can go for a lunch with these gals once per month.
I imagine that once I get to know them, I will be able to get over my timid nature and ask for a few numbers for those emergency days when I just need a helping hand or an ear to listen.
I encourage anyone with fibromyalgia to seek out a support group – and for us young gals to start talking to our more mature and experienced counterparts. Believe me, it has helped me more than I ever realized! I feel energized, excited and just plain relieved to find people like myself in person. This may just end up replacing my talk therapy.
No comments:
Post a Comment