Fibromyalgia Support Group
You're not alone in your pain. Fibromyalgia is a condition that can be difficult to diagnose and manage. If you're trying to cope with pain throughout your body, sleep problems, general fatigue, or other common fibromyalgia symptoms, you're in the right place. The community is here for you to talk about therapies and share your challenges.
Good morning!
Today's therapy is THe Room. Some of us try to have one in real life. An actual physical room. Since we can't, or don't, or whatever else...
Build a Room in your head.
I feel so Virginia Woolf: A room of one's own!
But this is legit therapy stuff, and you're getting it free, and I had to pay $85, so bear with the puma's snark factor.
BTW, if you don't spell-check "But this" turns out "butt his". Butt his what?!
***
OK.
Your Room. Capitalize that R. It's your Room.
Why a room?
You control access.
Nothing comes in unless you allow it. Like vampires that way. No invitation, no entry. (No, my therapist is not this weird, this is how I phrase stuff.)
All rooms are, technically, a Box.
But a box has six sides and can be sealed.
We wanta Room.
Rooms come with a door. As you stand in your Room, where's the door? Where's it go? Outside? To a hallway? Through another room? To the bathroom? (Don't ask me why, my visualized Room came with an exit *and* an en suite bathroom. Does my psyche need a potty break? WTH? Don't question, just... go with it.) So... where's the door? Where's it open to? Is it sunny, dark, neither, on the other side of the door?
How about windows? Do youw ant your Room to have windows? You can look out. Things can come in if you want. Light, air, etc., b/c hey, you can put curtains or film on the windows. They're your windows in your Room. Maybe you only want a little window high high up, so you can get air an dlight but no one can see you. Maybe you want a skylight instead of a window. Maybe your window looks out over such space that nobody could look in, anyway, unless they can hover like a bug. Or maybe the windows are screened by flowers or trees or ivy or an ocean.
Or you have no windows. Whatever.
Does your Room have a clsoet? Mine does. It is where I shove the things that snuck into the Room and I don't want there. I can shove them out the door, too, and this is prefereable. I am a newb at this, and require a clsoet. My therapist keeps me around for the challenge, I think. But my closet in my Room? Has a big iron bar on *my* side of it, so nothing is getting outta that closet. Nope nope nope. Someday, Ihope to be strong enough in my Room that I can push things out the door but for now, I need a closet. *sigh*
What's furnishing your room? Bed, recliner, both, neither? Tatami mats? Beanbag chairs? Hammock? On what do you sit/recline in your Room? I have a huge pile of fleece blankets.
Or do you like to have a tent inside your room, like a kid, blankets over a table, or a real camping tent? Don't worry why you want a tent, if you want one. Someday, you won't. Rooms of our own are subject to our whim. Whatever feels safe and cozy. That may be different day to day. We're just working on a general template. We can tweak it as we go.
Is your room dark, for sleep? Is it twilight, for peace and meditation? Is it bright sunlit, to warm you? Do you see stars and a moon?
What's the texture fo your Room? Carpet, wood, paint, wallpaper, when you touch your room, what's it feel like to your touch? Mine feels like silk and thick fleece and the fur of a cat on its tummy. (Or a bunny, same diff.)
How's your Room smell? Mine smells like cooking herbs and fresh air in spring, all light green and happy. Do you haev flowers, musk, animals? No smell? Ocean? Food? What makes your Room safe and relaxing for you? Loved ones' pictures? No pictures? Stuffed animals? Plants in pots that are always happy plants?....
Tired out from all that Room building? Got a floor? Walls? Ceiling? Door(s)? Windows or skylights? Got your furniture rthat you're all cozy in, not one pressure point to bug you? Smells lovely to you? Just the right temp for you?
Good.... now.... just breathe. Any breathing that calms you, whatever technique, but just... breathe.... let your eyes close.... (Well, after you read this, let them close).... in your Room. Memorize your Room. Put its key in your pocket. I put mine with my medic alert necklace tag. I can tap it and get my "key".... Always with me, always safe.... There's your Room....
Ready for your use when you needt o close your eyes and sleep, and keep things *out*.... Or just want to sit and relax and you can't get to a real life room, so your Room is set up, and you can just find it again.... you have the key... open the door... ther eit is.... to your specifications.... maybe today you need stars through a skylight. Maybe tomorrow you'll want fleece instead of suede. It's okay. The Room is magical. It is your Room. The only thing about it that is permanent? Is that it is your Room, your safety, your haven, where you go to let your mind be free, and at rest....
****
That'll be $85, please... Joking! Just joking!
OK, after such extensive therapy, I'm going back to bed.
***
Random trivia: A binnacle is the built-in housing for a compass on a water-going vessel. Binnacle. Neat word, isn't it? How we got in English to binnacle from Habituculum (Latin) is one of those mysteries we'll never solve, but we turned the t into an n, whereas Romance languaes like Spanish did not, so... English, once again proving it's all weird.
Speak of ships, barnacles are related to crabs and lobster, and prefer tidal pools to ship hulls, but they'll take hulls, piers, anything they can get. Erosive little critters.
The goose barnacle is a delicacy in some countries.
The barnacle goose, by contrast, was a medieval fable that allowed people to eat bird during Lent, when all meat was forbidden, and b/c it was really not a goose, it wasn't really meat, so... if you were fed barnacle goose, you were being fed a big old violation of Lenten prohibitions in the old Catholic church. Everyone knew there was no such creature (except maybe small small kids) but people would "go along" to get a decent meat meal in an otherwise very lean and very hungry season. Or, they'd eat barnacles. Seafood isn't meat, nor is fish, by the old Catholic rules. (Or current ones, actually, unless the pope changed things. I don't keep track. World's worst Catholic, or, as we call it "recovering Catholic".)
Three really is an animal known as a barnacle goose, for the similarity of its neck to the meat of the barnacle (don't ask, just think... weirdly curvy muscular structure), and it is rare not b/c it's a fable but b/c it sticks to the Arctic, where it breeds. THus, people saw the adults only, and those were nearly indistinguishable from brant goose, tho' the two are not even that closely related.
Odd dietary note, while I'm thinking of breakfast: The barnacle goose, as depicted in fable (origin: Welsh, btw, which makes me think they were just getting one over on their disliked English neighbors 8-900 years ago).... Anyway, it allegedly grew on trees and emerged from a shell, making it shellfish, and therefore against Judaic kosher dietary rules.
Yes, food makes people insane. Literally. Ergot, a fungus that grows on grain, can cause LSD-PCP-like hallucinations, and hysteria, as well as miscarriages.
***
And on taht long-winded note, ye heavens, I'm literally gonna go eat and go back to bed now that Hubby is up and about and I can sleep without fear of his imitating a crucifixion pose and smashing my poor chest region with an outflung arm. OW!
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Welcome to the Perseid meteor showers, the "biggies" usually every year. (The Leonids beat 'em one year IMHO).AND today much of the northern hemisphere will see 5 to 99% solar eclipse. How cool is that? Your best bet is to be in the UK or norhtern Spain, where totality is excellent before sundown. Me, I'll get a super duper tiny itty bitty slice of it, so little that it won't be noticeable. New...
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... observed a solar eclipse.
I worked out last night. I did what I could and feel good about it. I figure if I could hardly walk last week with no "excuse" at least now I have one. lol I love that the instructors tailor it to fit me and what I can do. They never question what I can't. I think my hip is out and I can't see my chiro until next WED! I hate that he is popular now. I liked when I could call and get in the same day. Maybe I should take all of my positive comments off his website. In my room would be a place for his table that stretches me. Some days I can tolerate it, others I can't.
Hugs to all and much love.
The upstairs in my garage is kind of my room...at least during hunting season over the last few painful years. I mentioned it before briefly, instead of going out in the woods, many days I'll grab a book, go upstairs in the garage, turn on the heat and read. Nobody knows exactly where I am...it's quiet and warm enough...not a fancy room, but a Kel place. I wish I was there now.
After stepping outside the line with my questionable subject yesterday, I'll clean it up some. :-) I'm not feeling to hot...seems to be a lot of that going on. Am in full flare mode here It didn't hit really out of the blue but it's still surprising me. I was walking down the hill this morn and must have looked like a drunk...could just barely stay on my feet and was wobbling back and forth. OH well, life goes on. On another not so happy note, my brain hasn't been right the last couple of days....well, the last 50 years but the last couple of days in particular. Off an on I'm having trouble keeping ummm up? if I turn my head, I see a flash and it takes awhile for my eyes/brain etc to figure out where I am and what I'm looking at. I know that sounds like senseless drivel, but that's what I'm good at! :-) I'm afraid that I'm seizuring (New Kel word, look it up!...well don't do that). Don't want to talk to my neuro because she'll want to crank my meds....and I have had a lot more good days than bad. Anyway, that's what on what's left of my mind this morn. I have an appointment with my therapist (number 2, well she isn't number 2 but it's the second appointment). I'll talk with her about it and figure out what to do...and THUS, be fine.
Hoping everyone finds a safe and happy room today!
Kel
Kel, seriously, you need to tell the neuro you are drunk-ish. That's probably meds, and she may switch, and you can always go to a different neuro, or go via emergency room. Seriously, no messing about now. I wasn't about much yesterday to see 'questionable", but we're a forgiving and understanding bunch, so I'd say let it go.... And five bucks says your therapist also recommends you disdcuss the "Drunk" thing with an MD. I have ot pass the drunk driver test whenever I see my neuro. (No joke, btw. It's hilarious to me for reason I don't understand, probably b/c I neither drink nor drive!)
It's very cool that you worked out without it being to much! For some reason, my chiro has decided that I only have to go in every 3 to 4 weeks now....use to be once per week. Like a good scout, I stuck up for myself and said OK, that's what we'll do then! :-) I hope you don't get to sore today from the workout...sending you soothing (((hugs))).
Thanks for check-in, and I hope you are doing well today.
Well, it's house viewing day. I pick hubby up at work at about 10:45. We will look at 2 homes, and will hopefully be done. I'm not a super fussy person. I just want a nice home with nothing to fix....like our current home had/has.
Anyway, then we are going to head home. Tomorrow is the resort with hubby's family for 3 days. Our house is being shown twice on Saturday while we are gone. We keep praying for a bid, but none so far.
I brought my zero gravity chair to my daughter's. I can't believe I never thought of that before. It's going to the resort too.
Hope everyone is doing well. Sorry I didn't get back to you all yesterday.
Leo thanks for the therapy, that was needed today.
Sorry I've been MIA, sometimes I think I was KIA. The Dr took me off my bipolar meds a few days ago and the depression and irritation has set in. I have an appt with my new pdoc today and I'm praying he puts me back on them. It's been rough to say the least. I'll be back in a little while. I'm going to go work out. I probably shouldn't because I'm in a lot of pain anyway but I don't know what else to do at this point.
Leo, great trivia and therapy. My room is very plain and comfortable, I'm so sick of the chaos in my world, I need plain and simple to feel less overwhelmed. Thanks for that fun exercise.
bbmom, I'm glad you worked out, I notice more pain when I workout, but since I have neuropathy and I worry about not walking one day, I will continue to workout until I no longer can. I hope you don't flare up too much today from working out. My legs are killing me from my workout. Good luck, I hope your day at work goes by fast.
kel, that sounds like me on Lyrica, the drunk and woozy feeling. That crap really affected my brain. I know you don't want to talk to your neuro, but maybe you could try another med? I not it doesn't sound ideal, but could be better in the long run. I'm thinking about you!
Angela, I always hate this day for you. I'm praying and thinking about you all day. I know it will be hard, but it will be over and you can still have a good evening and fix something yummy for yourself, and watch a good movie or show.
ida, I hope your viewings go great, and you get an offer on your house soon. It's all in God's plan and will happen on his timing. Trust in him. I hope you aren't in too much pain this weekend, and you can enjoy your trip. I'm glad you took your zero gravity chair. :-)
My legs and feet are hurting so much. I can't walk or workout w/o them burning and hurting so bad. I wish I could find something that helps with this neuropathy pain. I ordered another heating pad, that has straps to tie. I will use it on my lower legs while at my desk. I noticed that helps me at home. I had to use it last night to read a bedtime story to my girls. The pain gets to be too much. I don't know if I should try a depression medicine or a drug from Rheumy Imuran to help the lupus. I don't want more nerve damage and arthritis, and maybe that will keep it from progressing, except it might give me cancer in the process. I hate meds.
I hope everyone has a good day. I'm ready for chocolate, and it's not even 9am. HA!
Bbmom- that is fantastic working out is always something I enjoy... endorphines.
Kel- i can't imagine that is fun. It sounds like you've started a cost benefit analysis already. I would encourage you to talk to her about it.
Angelajo- I hope your therapist listens to you and is able to provide some help. I am sorry you are in pain. Have you come up with replacement activities? Holding ice is always a good one.
Idajoy- best of luck! I hope you find something and that a bid comes in soon.
Preciousbabygirl- I hope you have a good work out. I hope you are able to find relief at your appointment today.
It was a very long night for me. The issue with my power only got worse. My landlord followed through but only so much as he said I needed to call the power company. I did as soon as I got home from work. While I was waiting the meter in the house caught fire. The smoke nearly killed me. But luckily most of the damage is outside and not inside the house. I called emergency services but the power guy showed up and was able to put it out with his estinguisher. I was pretty shaken up... I was having hard time breathing and so I ended up going to the er to get checked out. The smoke just triggered an asthma attack. The nurse was cute however and who doesn't like a bit of eye candy now and then? He was also quite funny and so it was not the worst trip to the er.
I finally made it to my friends house to stay with the fur babies, and I ended up going back to the er a friend of ours had her grandson pull a kettle of boiling water over him. So we both went. They ended up sending him via ambulance to the closest burn center which is three hours away. The boy took it like a champ. I would have been hysterical and he was able to calm down before the morphine.
When I finally made it to the couch I am sleeping on I was aching and stiff. On top of the stress I slept on a couch and so today I woke up pain after not sleeping very well to begin with.
Sending positive vibes to all today
I am sorry I don't have time to read everyone's posts (im at work on billable time) but am glad to see you all here. BBall I hope you are doing well. Twin, I finally came around and am trying to let go of the reigns and trust in God/the Universe/any other way people address the force guiding and bigger. Still having to try really hard to let go and trust but thank you. Ida I hope things are moving along with the move to get you somewhere a little easier to handle.
I have been doing alright. The full dose Cymbalta seems to help tremendously. Well, except for right now. I think my boss gave me a cold so I will now be finding out what that feels like with fibro. So far not a fan! I'm applying for other jobs as mine confirmed they will not work with me on working from home when I need and is still not doing financially well by any means... more layoffs. Well if anyone has any cold with fibro suggestions to make it more bearable I'm all ears!
Leo, love the room idea! I will pay the $85 bill as soon as I get some money after having paid rent, electric and other bills ;). When I was as young teen, I read somewhere in the Bible a verse about hiding in the shadows of the Lord's wings. I was so relieved... and mentally took myself there whenever something painful came up (which was a lot being a rough childhood). I remember this one day when everyone in the family was super upset and angry about something that happened and they were taking it out on each other (including me) but I just had the biggest grin on my face. My older brother got ticked at me and asked what was I so darn happy about. I told him nothing could touch me because I was hiding in the Lord and he slammed the door in my face. I don't know what happened to that when I grew up... I guess I forgot about it. But your post reminded me, because it was a similar feeling. A feeling of protection and safety.
Wow, Crumbs! Your day does sounds like something out of a crazy movie. I hope everything is getting fixed today and you'll have a much more relaxing day.
It's raining today.... so I wonder if they will have horse therapy or cancel? It will be a little sad when I go there today, being they put Justin down last time. Marriage counseling was OK. She asked why we were there and I said we fight constantly. Mainly about the chronic pain and PTSD but there are other systemic problems like his constant decision making for big and small without talking to me and just announcing he bought a laptop, is going on a trip, or family is coming to say with us for x amount of days. I'm so glad he defended all his actions right in front of her so she could see it: "That's right! My trips to VA are non-negotiable! And the laptop and chalk board I bought, I did all the research and made the best decision. I didn't need to sit her down and talk about it." The counselor: "But this is a partnership. Don't you think she's to be included in decision making?" BINGO!!!!
We also talked about the fibro and how he just goes out to surf and hike without compromising or making time for doable activities with me. The problem is, I can only go out for a couple of hours and then I'm spent... and I also need gentle activities. My husband wants to go out all day into the night. Because I can't keep up with him, he chooses to leave me at home and go do his own thing. So we discussed that a little. I'm looking forward to the next appt.
Back in a little.
Bbmom, funny about the chiro and your positive comments. I like how you'd have a chiro in your room. I'd have a massage table and massages at my command, gosh, there muscle can ache yeah. I'm glad your workout went well!
Kel, I like your upstairs room. Sounds peaceful. I would talk to your neuro about those concerns. That doesn't sound good!
Loaded day for you Angela... will be thinking of you and hoping for strength.
Ida, I like the sound of your log cabin room, very cozy. Hope your viewings go well and you land something! Also that someone puts a bid. Good job on bringing the zero gravity chair :).
Precious, why were you taken off the meds? I'm glad you'll be back on them. I always worried when my mom either voluntarily stopped taking them or a doc changed something. It can be dangerous. I hope you'll feel better soon.
Wow, Twin.... those are not easy decisions. More nerve and joint damage now OR cancer later?? I don't know what to say to that. Only that my heart goes out to you and I wish I could help you. I'm glad the heating pad helped you at work also read a bed time story to the girls. Sometimes the little things make all the big difference. Thinking and praying for you often....
Maynard, sorry you got a cold... and sorry work is giving you the shaft about working with you from home :(. I hope you land a good job who cares about their employees and has that option.
Everyone, big hugs!