Since nobody else will listen I just wanted to tell the group that I feel like someone took a baseball bat and clubbed me all over. I feel that bad and have nobody to tell. But since I had to tell someone---it might as well be here where people understand.
I wouldn't usually post like this, but I'm at my worst today and it's anxiety provoking. I did too many weekend activities and am paying for it now.
I just feel like I can't do a thing today---even walking the dog.
Even the bottom of my feet hurt. I can't sleep during the day, so I'll have to gun this one out til bedtime. I pick up my pain meds at the pharmacy tonight, but have some for today. Hopefully I'll start to feel human again by tomorrow.
I just can't stand the fact that sometimes I have to act 'normal' just so other people don't run from me. My past experience with friends has been that when I've told them how sick I am---they just don't want to here it and just stop calling or caring.
So--I try to be as normal as possible, but I eventually crash hard and heavy like today. I don't know how I'll be able to do anything and that's been raising my anxiety level. I don't even want to answer the phone.
I know this will pass, but how long it will be this time---I have no idea.
Oh, God, Ed, I'm so sorry - I know exactly how you feel, both physically and in terms of friends not wanting to deal with it.
I think we all tend to overdo it on the weekends, too - I did. Here, we finally(!) have a potential storm front moving through, and the temp has dropped from 103 to 69. It's gray and - for here - humid - and while I'll be SO glad if we get some rain, my body is screaming at me. I think it was Taurus who used the phrase "torqued up" in a post last night, and that's really what it is.
A couple of suggestions:
First, DON'T answer the damn phone! You don't feel like it, and it's *your* phone, to answer or not as you please. Turn the ringer off, turn down the volume on the answering machine, pop in a video or turn the TV to something indulgent, pop as many pain pills as you're allowed, and try to forget that the outside world exists, just for today. "Normals" don't want to be bothered with dealing with FMS, so why should you be bothered with dealing with them when you're in a flare.
Second, do you have a heating pad with a massage function? Soemtimes that really helps the bottom of your feet. If not, get one of the dog's tennis balls, sit in a comfy upright chair, and put the tennis ball under the ball of your foot. Then roll it around under the foot, pressing as firmly on top of the ball as you can stand. Start with the ball of your foot, then move under the arch, then back to the heel. Five minutes per foot helps keep me from getting shin splints and stress fractures (I'm very prone to both) during my workouts.
Third, even if you do hagve the massage pad, maybe use the tennis ball anyway for the feet and use the pad for body. If you don't have one, I highly recommend getting a multi-setting heat and massage seat cover. It set me back 100 bucks, but when I had to drive 2000 miles out here last December, I don't think I would have made it without the seat cover. Brookstone has them on their Web site; they're designed for cars, but can go in any chair, upright or recliner. Mine has heat and ten massage settings, stretching on a car seat from top of head to knees. And when I'm really in massive all-body pain, or my legs are beyond myh ability to cope with, I lay it down on the bed, leave the heat setting OFF, and use the massage under my body and legs for awhile. Just the sheer vibration helps block some of the pain.
Finally - and I have done this when I was really desperate and had no help! - next time you go to the pet store, invest in a package of puppy training pads. (I think it's about six bucks for a package 56, or some odd amount like that.) That way, when you have a day when you can't take the dog out, you can put them down on the kitchen or bathroom tile. The dog doesn't suffer, nothing gets damaged, and cleanup is just grabbing the edges of the pad, folding it over, tossing it in a trash bag, and throwing it out.
I don't mean to tell you anything you don't already know, or have tried and found doesn't work for you. But I know how hard it is when you can't figure out any way to deal with a flare, and I just try to give people as many things as possible that I've found over the years that might work. And keep venting to us - at least you know we get it!
Thank you for the suggestions. The only things I do have are the 'puppy papers' for the floor. I use them if I'll be going somewhere overnight where I can't bring the dog.
I have an icepack. The heating pad broke, so I've been using a massive ice pack for the back. I'm not sure it helps.
I also have the tennis ball and have been using it, but as to your other suggestions---I will take them. Thanks for offering them. You were one, if not the first one, to welcome me to the group and I really appreciated it.
The heated massage pad I had looked for at Bed, Bath and Beyond. I think I might go for the $75 one. Also---have you heard of the 'Cuddle-ewe' mattress cover? I was going to invest in one, but my wife said it would make the bed too hot.
I'm definitely not using the phone today...yes, I just turned it off. And I'll just take the pills and like you said: don't even deal with the outside world today.
I'm aggravated at myself for going along with my wife's plans for the weekend.
I very seldom tell her I hurt, so I ended up in the casino with her for two seperate days--Friday and Monday, with hospital visits to her mother in-between. I never got a chance to rest right.
During the day I usually am alone with my dog. I got SSD when Lyme Disease attacked the body---it got that bad. Since I've been working since a kid (getting working papers I was so young) and putting in a good thirty years makes it easier on finances with the monthly check. I am so grateful I have it.
I was looking for some of your posts, as you've been so helpful to me I wanted to read some---just to get more of an edcuation on this disease.
It really is awful.
I do hope you get yourself alot of rest today you know that you alway puch yourself to hard to be normal and then pay for it so I am here to bug you lol,now relax and don't do anything today but relax those muscles !!
Ironically, I joined this board only a matter of seconds before you did, I think. I had just joined and responded to a couple of posts when I noticed your intro post (I didn't do an intro - don't know why; I just jumped in). So you kind of made me feel welcome, too!
I've thought many times about trying the Cuddle Ewe underquilt myself, but right now it's kind of cost-prohibitive for me. I woldn't think it would make the bed all that hot, though - it's all natural fibers, just cotton and wool. (Incidentally, is your wife supportive of your illness? If not, that must make it so hard. For the whole time that my ex and I were together, I was battling this, but we didn't know it. I didn't even see a doctor about it until after we'd split; ironically, he's now one of my biggest supporters.)
There's an alternative to the Cuddle Ewe out there, although I have no idea how well either of them works, since I've never tried them. It's called the Comfort-U body pillow, and it was designed by a nurse who suffers from fibromyalgia. It's a body pillow in the shape of an upside-down "U", so that your head goes at the curve and the two prongs run alongside your whole body. It's supposed to be padded in such a way that it supports that body all over and takes pressure off all the fibro tender points, and some people swear by them. It's usually around $140, but I just Googled it, and sitincomfort has it on sale for $99 plus s&h. Comes with one pillowcase, and you can order extras out of various materials. A lot cheaper than the underquilt, and it might take care of your wife's concerns about heat, since she wouldn't have to feel it at all.
BTW, Im always glad to help any way I can with this illness, because I know first-hand how devastating it is on psyche as well as body. However, You should absolutely take any of my "advice" with whatever grains (or whole friggin' silos) of salt you feel necessary. I'm not a doctor, obviously. By profession, I'm a lawyer and public-policy wonk, and so i guess I approached my illness the way I approach professional issues: Research, study, analysis, asking lots and lots of questions, being skeptical of what self-appointed "experts" tell me, etc., etc. And it was a few years before I got a regular DX - before then, I'd been through everyone conceivable provisionsal DX for every autoimmune disease known to humankind, I think. So, of course, with every knew possible DX, I went and researched everything I could find, and put all of it through various analytical "filters" to determine what seemed valid and what didn't. That probably goes a long way toward explaining why I seem to have an opinion on every topic.
But, anyway, I'm glad you're on the boards - you'va already given me valuable info about what's worked for you and what hasn't. And if I can help in any way (even if it's just for venting), just leave me a message here. I work from home these days, so I'm usually online off and on all day.
It's always good to hear from you. Regarding your question about my wife:
she was not supportive when my Lyme Disease was at it's worse.
She couldn't understand what was happening to me and was very afraid.
We had an usual kind of breakup---living together, but not really talking.
She made sure she was gone most of the time with her girlfriends.
However--she became supportive when I asked her to go to doctor's visits with me. Before that I had been going everywhere by cab. I can't drive because I have epilepsy and haven't been seizure free for a year.
Anyway--when she went with me to all the docs and saw how serious this disease was becoming----all started to go well again.
It took a period of adjustment, but now I very seldom complain about pain or flare-ups. She takes it as her cue when I say I won't go to her mother's or I won't go here or there that I'm not feeling good. But--we don't really discuss it. I try to 'buck up' and be at my premium best. Sometimes I can do it, other times I can't.
For example, we went out this weekend and she had a great time at the casino for two days. I am in a major flare and major pain today----but I won't tell her 'cause she'll say I'm ruining her good time. So--I shut up.
That's why I'm glad there is a FM board. I'd rather bring the pain here where others understand.
I'm in same shape as you. I was determined to become active in spite of everything. The mind was willing, but body is in deep protest. Monday night I went to concert in park and I think carrying chair up incline to sit on lawn was the killer as I feel like I have run a marathon. Tuesday I went to get haircut and today I attended first water aerobic session. Right now I feel like I belong in the mortuary. I could take whole bottle of Flexeril in vain as without sleep it is like taking sugar pills. My legs and arms are having such bad contractures that I feel like I should look like a muscle builder. They have blacktopped parking lot of apartment so we have to park on street and I feel like I have to walk a mile just to get to car. Hopefully tomorrow we can get back to normal with parking. Here's hoping we can get back to our baseline tomorrow and have a few days of relief. Stop the merry-go-round I want to get off! (TT)
I I am so sorry Ed that today has been like this for you. I know how you feel we are looking for a house right now and i over did it now i am also paying but not as bad as you are. I am locking myself in my bedroom and just not worrying about anyone or anything till I am doing better I suggest you do the same. I have also been told to "buck up and get over it" so I come here whenever I'm not doing well or just looking for someone to vent too. I don't understand why people can't except when something is wrong with someone but what can we do.Hope you feel better soon!
Last edited by dramagurl704; 06-23-2004 at 06:12 PM.
Ed, sorry to hear you are having one of those days, you have just been kind enough to help me and then you have found yourself in a heap. I don't think I have mentioned this, before I had the motor cycle accident that caused my FM and Myofascial Pain Syndrome I use to oversee and manage cattle and sheep stations (Ranches). Now the sort of people that I worked with and still see, as we live in a small country town, believe if you are not dead then you should be working or doing something. Because of this sort of attitude there are many many days I really cannot face the world but I have got to the point that I will not go into long explanations trying to defend my problems to these people as they are not going to understand anyway. When we think about it how can we expect someone to understand what we go through, heck, I have a hard enough time understanding it. I must admit there have been a few times I have really wanted to wipe the unbelieving looks of peoples faces but in the end its not going to do any good anyway. The point I am trying to get at is if you look fine then everyone thinks you are fine and I believe with our condition this is one of the biggest problems for outsiders to deal with, no missing arms or legs or no wheel chair equals no problems.
I mention all this Ed just so you know you are not alone. I was talking to my wife this morning and saying that I was keen to check the computer and see if I had a response to my e-mail, not because I was expecting a quick fix for what I have but because its nice to know others understand how I feel. I pray your day and week picks up for you Ed, take care.
Being a widow, I cannot even imagine being married to someone who is not totally supportive. Supposedly sharing everything with one's partner is the ideal life. Well, this is something that nobody wants to share with you. The stress of coping with this and fumbling daily alone is hard, but living with someone and trying to deal with everything would be totally overwhelming. My daughter lives in FL and I live in WI. She has never seen me in this shape and I would never want her to as she remembers me as such a strong person when I am now feeble. I have many relatives up here, but no longer have any dealings with them due to their narrow-mindedness and downright cruelty which was more than I could cope with. I can no longer play the game of feeling upbeat when I look like I have kicked dirt off and crawled out of grave. I rarely do anything with anybody now because there is usually a cutting remark that they stupidly utter which about crushes me and I just cannot deal with this. I cannot even imagine being in a family structure in this shape and I applaud anyone who can carry that load. Having fibro is like being given a life sentence in solitary confinement. I cannot think of anything positive to say about it, except perhaps it humbles us and makes us very sensitive individuals. (TT)
You said it perfectly. That's how I feel. I am so tired of people who can't understand or care that I don't even give them a second thought anymore. If I find myself in the same room with them---I ignore them (mainly in-laws).
Like you said: you drag yourself up from a kinda grave-like miserable existence and try to make something out of it and nobody cares.
Hi Ed, et al...
I too have the overdo it on the weekend scenario. Part of the reason I haven't been here or typed much all week is because I'm just now feeling a little better on Thursday. I do have an understanding spouse but sometimes just having him home on the weekend makes it harder for to pace myself and rest. Our son is more excitable and active than during the week days home alone with me.
I made breakfast Sunday morning for Father's Day. We went to dinner in a limo on Sunday night for a contest my husband won. It was great fun but just the process of cooking breakfast in the morning, trying to watch the boy all day so Daddy could have his day and then getting myself dressed, pressed and ready to go to a nice dinner wore me out. Then there was the two hours at the restaurant with a cranky toddler.
So I too feel your pain. I hope you are feeling more rested. I finally took an Ambien last night because I'm allowed to occasionally while I'm pregnant. I hadn't had REM sleep in about four nights. I feel much better for it today.
Maybe you should tell your wife that next time she should find a girlfriend to spend two days in the casino with and you can do something quite and relaxing at home. Then you're both happy. I miss doing stuff with my hubby sometimes but I also cherish whatever rest I get too. It's hard but you need to be honest with her about how hard it is for you to go along with her plans. Maybe try showing her how many of us have the same problems.
Good luck this weekend and try to pace yourself everybody - Andy
I hope you are having a better day! I too can feel your pain. My husband is supportive to a point but he has RSD and is in constant pain himself.
I too, overdid it this weekend. Well, actually the past month has been terrible. My father in law was in the hospital for three weeks and just passed on the 5th. It's been horrible. I've been going on fumes. Unfortunately it all catches up to us doesn't it.
I can't add any more advise other than what has already been given but know that we are all here for you.
It has been wonderful for me to to come here and listen and vent with all of you!
I know how you feel! But , every so often I , too, choose life over fibro, knowing I will pay later..but it is worth it most of the time! I LOVE my vibrating /heating / chair pad. Mine is Homedics, full body length, I found it on ebay and it was only $27 including the shipping. I also bough myself a visoc elastic foam topper for my bed. Got one of the pillows too...The topper I found at JCP and it was about $50. The pillow on sale at Target for $16. The reason I mention the prices is that help can be found for reasonable amounts of money. Of course none of these are a cure all, but they have helped me to be more comfortable. The next thing I think I wand is a recliner ( NEVER THOUGHT I WOULD SAY THAT!LOL) but then the whole massage pad would fit- now I use a chair and ottoman..or lay it flat on the floor, or on the bed.
I sure hope your current flare ends quickly!