I just read down enough to see how old your daughter is. When my youngest was that age I was in a wheelchair full time and unable to lift him out of a crib or any of that. We set up a side-car bed against ours. I could roll from our bed, into my chair, use a grabber (one of those long sick thingies with a trigger on one end and pinchers on the other) to unlock the wheels of the side-car bed, roll it back, and use the sheet under my son to move him towards me and into my arms. The grabber is a necessity, spit out pacifiers can be easily and quickly retrieved!
I carried my little guy in a sling most of the time, which mostly left my hands free to care for my then 4 and 2 year old kids. Disposable dishes, a changing "table" set up on the couch, designated shelves full of healthy snacks for the older 2 in the fridge, baby gates, and no longer caring about what my house looked like made my life possible.
I hope this helps a bit. There are disabled mothering groups in some towns. I ended up lucking out when one of my husband's coworkers suggested his wife, who was almost totally blind, and I could watch our toddlers together. That turned into an 11 year (so far) friendship which has seen me through some very difficult points in parenting.
Motherhood is fraught with many guilt pitfalls, but none of them have hit me as hard as FM. I have three kids who were 8, 10, and 12 when I was diagnosed, but, as is the case for most of us, I'd been broadsided by FM long before the diagnosis. I've been a stay at home mom all of my kids' lives. I knew myself as an active PTA member, a woman who loved to sing and bake cookies, took her kids on nature walks, did arts and crafts using toilet paper rolls and empty egg cartons... and still I didn't feel I did enough for or with my kids. Looking back now, as I sit in "my spot" after having my husband get my handful of morning medicine, I'd like to shake my former-self and tell her to relax and enjoy everything she took for granted.
Parenthood is hard, parenting with FM can seem impossible, but it's really not. It requires pairing down, coming back to basic truths, and no longer comparing yourself or your family with the inevitable Joneses. You love your daughter, you keep her safe, and she knows that with you she is loved and safe. That's enough, I know it doesn't sound like it is, but trust me, it really is.
I took my family to a family counselor soon after my diagnosis. We could only afford a few sessions, but they helped all of us a great deal. Sometimes my now 15yr old daughter bursts into tears and wishes I could do things with her I can't, and, yes, that hurts, but at the end of the day I can cuddle her on the couch and she tells me everything about her life through shared smiles and giggles. I've come to learn just being able to be there for her is an amazing gift.
I've slowed down so much and that's allowed me to appreciate my kids in a way I couldn't have before. I get a lot of quiet time with them, they tell me everything (sometimes more than Mom really wanted to know!)...and, as odd as this sounds, without FM I don't think I'd have this.
Yeah, ok, my kids aren't in any extracurricular anything, but unlike most of their friends, they have a mom who's always there, predictably in one spot in the house. Their friends have started trickling into our house, and I've gained a reputation as "the mom that can be talked to" with the teenagers...which I think is pretty cool.
Before all of this I spent a lot of time in a wheelchair thanks to a genetic spinal condition, so I guess I already knew on some level that motherhood can be done regardless of limitation.
I've babbled enough If you can talk to a counselor you trust, I highly recommend it. The only big thing I'd suggest is to never let your little one take care of you, my kids hear this a lot: "You don't get to take care of me, I'm the mommy. You can, however, help me out from time to time."
Hang in there, you're not a lone, and it is possible to still be a good mom ...even with active debilitating FM.View Thread
Everything I've read about the genetics of FM uses careful language like "suggests a possible genetic link". Nothing I've read says FM is genetically inherited like blue eyes or even psoriasis are. I asked my doctor about it and he said the jury is still basically out on that aspect of FM...then again, "the jury" seems to still be out about most of FM. It's not a well understood "condition"/"syndrome"/"illness" (all terms I've seen used on different sites or in different books).
The short answer is: Maybe.
Keep in mind that genetics is still a relatively new field. A fact the Geneticist my son was seeing for a while made sure I was well aware of.
Looking back over the last five generations of my mother's family and four generations of my father's family, it appears I'm the only one with FM. The vast majority of my family members have lived into their 90s and had had remarkably healthy lives until their 70s when the normal affects of aging made them slow down a bit.View Thread
I just got off the phone with my mom, we talked for an hour and a half and in that time I managed to retell a few stories. A couple of years ago I was the go-to person if something needed to be remembered, now I can't even have a long chat without repeating myself.
It's not all the time, but it's enough to be discouraging. I'm new, comparatively, to the whole FM roller coaster. I was diagnosed about a year ago (I think, my sense of time is borked, as well), but, of course, I'd been living with it for quite a while before I got the official diagnosis. I'm a stay-at-home mom, and have been for the last 15 years. I was good at my job, active in the kids' schools and our house was always full of jabbering young'ns . I cooked nearly every night, could come up with games, crafts, and stories without any effort. I was thin, active, and generally very content.
Now my husband does all the cooking because I get lost in the kitchen, I can even be overwhelmed by the simple act of making pasta. I don't drive, I don't do crafts, my house has been far too quiet.
But! That's changing. I'm learning to cope. I'm still in here, the quick minded woman still exists, I just can't get to the surface the vast majority of the time. I've learned to forgive myself, to accept that my life is moment to moment, and I'm bordering on being alright with that. I haven't "given up", I've just accepted that things have changed. I live with calenders, as Caprice said, and God love the inventor of the post-it! I keep post-its with me all the time. My kids have learned to write things down and stick them to my desk, and I've learned to be okay with needing that.
I ask people to remind me of things constantly, and if I forget something I've learned to let go of the anger and guilt the vast majority of the time. I've paired down my life a lot, but, truth be told, that was already happening thanks to the pain and earlier bouts of fog before I knew what to call it. Now, at least, I'm able to make informed choices about what I can handle and what I don't think I should take on.
I don't know that it gets better with time so much as it gets easier because you learn coping strategies. Hang in there, and try to have patience with yourself (a heck of a request if you're anything like me).
The bump of the FM and Mono question prompted me to finally ask something that I've been curious about for a while.
I was diagnosed with "multiple trauma post traumatic stress disorder" nearly seven years ago. I was doing miles better when I got run over by FM. When I saw the neurologist who first diagnosed me with fibro, he asked questions about my history and then noticed the PTSD on my chart and did this big "OoooHhhh!" He went on to explain there were tentative links between FM and PTSD that were recently suggested by a military study.
He quickly caught himself and told me not to make too much of it, no one knew for sure, etc. Still, I've been curious about it. I asked a friend of mine who was working as a nurse at a VA hospital if he could find out, but he didn't get around to looking before changing jobs to the private sector.
An armchair physician friend of mine suggested it was probably because both "syndromes" affect the central nervous system and originate in the same part of the brain, but I haven't found anything to back that up. If anything, I've found that medical science is pretty clueless about both FM and PTSD (not a comment on lack of effort to understand, just that neither of them are understood yet).
Anyway, I'd love to know what other red herrings people have heard and, of course, if there is any possible link between FM and PTSD.
I know the original post is sorta old, but it might be neat to add a poll to it if that's possible.
I'm in the no mono group, I'm supposedly immune to it. I've taken care of people who had it and been in very close contact with them. When my daughter had it my doc tested me and I came up negative, when I gave him my history around it he said I was probably one of the oddballs who doesn't get it. He was much more scientific in his explanation View Thread