Wow, my fibro is in full blown flare up mode, luckily I'm entering week 3 of working from home and have been pretty much able to compensate for my body's lack of co-operation. I've been finding it next to impossible to sleep...the night just drags on and on without even a hint of sleep. Or the flip side is that I've "slept" (so to speak) through the night, but wake up even more exhausted than when I went to bed. It's a horrible cycle to be in and I hope it will end soon. The one bright light is that I know at some point it WILL end and I'll start getting some rest, but in the meantime, I have to really be careful to not over extend myself, while sleep is scarce.
I've definitely had lots of time to read and catch up on just "me" time, which I'm finding is more and more necessary. I've gone most of my life putting others first and me last, however that doesn't work so well with fibromyalgia. It's more important than ever to keep myself focused and centered so that I have the energy and strength to be there for my family and loved ones. I guess you can find a blessing within any dark cloud, huh.
It is still hard though, to feel so isolated when you're not around others who are struggling with the disease. Once I get into a routine with my working from home, I really want to start up a face to face support group for others suffering from FMS. I know it would make a huge difference for me, so I can only postulate that it would do the same for others. It seems as though, there is a huge gap in terms of lack of support for family members of those of us who suffer from fibro. They go through it all day to day with us, but find it equally as hard to get any face to face support from other family members dealing with the same issues. Maybe that can be something I look at when setting up a support grp. Maybe we have a family members group run concurrently so that it becomes a family healing process....I don't know yet, but those are some of the ideas I'm thinking of.
Obviously I have a lot of thinking time at night so I have to be careful to not bite off more than I can chew. I've requested some information online, for starting local support groups, and I assume it will outline some of these same concerns and how others have dealt with them. In the past I would have seen going to a support group as a sign of weakness (shaking my head as I type), but now I see it in the exact opposite light. I think it takes strong, courageous person to walk into a room of strangers, and say "I need help"...hopefully I'll find a way to create a safe and welcoming environment for people to do just that. Nobody, regardless of whether you suffer from a chronic illness or not, can survive in a bubble all their own. It's important to ask for help when you need it, AND to lean on others when you can't do it alone. Through the process of learning to live WITH and not in spite of my disease, I have come to rely on others in a way that is not always what I would want in my "ideal" world, But thank god I have two guys in my life that are there for me day and night no matter what I need to help me. I'm not sure what I would do without them!
until next time...
hobbz
6 comments:
I just found your blog while doing a search. I am glad that I found you. Know that you are not alone in your pain & sleeplessness!
Welcome Amy, and thanks for visiting my blog!
Ah, sleep, that golden and elusive thing. One thing I find with FM is that because I seldom get into a deep, non-dreaming state I have very vivid dreams. Full colour, sound and all the special effects. It's sometimes like leading two lives! I enjoy being able to do things in my dreams that I can no longer (or could never) do in real life, but sometimes, it get's a bit tiring. Do you have vivid dreams?
A support group can be a fabulous thing, I can see why you're feeling the need. My beef with groups is that they are often not moderated well. Often, you get one or two people in a group who really take up a whole lot of air time. A moderator needs to be able to help everyone take their time to speak. When there is a good ebb and flow between people, support groups are a really important tool in coping with chronic illness. Good luck with your research... and pacing yourself!
And sleeping.
Yes Donimo I know exactly what you are talking about with dreams! Sometimes I can't remember if something really happened or I dreamt it. lol too funny.
I also walk and talk a ton in my sleep, which I've always done to some extent but with my fibro it's taken on a whole new life of it's own. Alot of the time my husband has trouble telling whether or not I'm awake.
It does become exhausting though and wears a person out.
Hi. I've been reading your site. I envy your ability to work from home. Someday... I've had issues with insomnia and can relate. I am so jealous of my husbands sleep skills. Insomnia is so freakish. It drives me crazy. Carolyn
could anyone recommend a fibro specilist in anchorage? thanks
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