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  #31 (permalink)  
Old 08-20-2004, 05:04 AM
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Cyn...sorry you have had to experience nastiness from a neighbor...but you handled it beautifully..you took the "high road" Congratulations! I have recently experienced a difficult person too in my life. Today I got this inspirational thought in my email..I liked it and it made me laugh.

Expecting the world to treat you fairly because you are a good person is a little like expecting the bull not to attack you because you are a vegetarian.

So let all those negative thoughts roll off your shoulders and go on...I am!

Love, Janet
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  #32 (permalink)  
Old 08-20-2004, 05:24 AM
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Cyn, you are going to get through all this just fine! The coping skills are learned, and you probably will have to try several kinds of coping skills to find the ones that "work" for you. I'm sure you know a lot of them, but I'm gonna list 'em anyhow:

Things to do when a stress situation arises:
  • Slow deep breathing with relaxation - Before reacting to the next stressful occurrence, take three deep breaths and release them slowly. Actively "make" your muscles all relax.
  • Visualization and imagery - after taking the slow deep breaths and relaxing, think of a very peaceful, comforting image - a place, an event, a time you felt very safe and comfortable
  • Warm / hot bath - longish - use bath salts or oils if desired
  • Aromatherapy - there are certain scents that are intrinsically relaxing, and there are probably specific scents that bring you comfort. Identify your "special comfort" scents and keep sources of them around to use to help break up stress. Candles, potpourri, perfumes, spices/herbs, etc, can all be easy-to-keep sources of comfort, stress-breaker scents
  • Venting to someone - or here!
  • Asking someone for a hug (if you can stand the pressure on your body - there are times I can't stand even to be touched)
  • Get a massage (same caveat as before!)
  • Go to the chiropractor
  • Read a book
  • Pray
  • Take a walk
  • Go shopping for something totally frivolous and fun
  • Take a nap
  • Have a cup of tea (not coffee - coffee jazzes us up, tea tends to soothe)

Some things you can do preventively
  • Gentle exercise - regularly - daily (this is cumulative - Exercise not only stimulates release of endorphins, the body's natural stress-fighters, but it also helps lower cortisol and other stress hormone levels. You'll also be healthier and better prepared to deal with both physical and mental demands. And it will help with future stress!)
  • Prioritize your commitments and responsibilities - Differentiate between you mandatory obligations and those commitments you made due to guilt, to satisfy others, or to fulfill unrealistic expectations of yourself. Learning to say 'no' can help you reduce the stress of excessive demands on your time and energy.
  • Work on time management - organize your life so you have as much time as possible to accomplish what needs to be accomplished. Schedule in rest periods and naps. Go on a disciplined sleep schedule - going to bed at the same time each night and getting up the same time every morning.
  • Wear clothes that are comfortable, do not pinch or bind, and are soft against your skin. It is amazing what a difference this has made for me. I use a Bounce unscented sheet in all the dryer-loads of my clothes and the reduction in the nagging little scratchy feelings of "rough" fabric has really helped!
  • Whatever else you can think of!

There are many websites that help with time management, list additional stress reduction strategies, and give detailed "how to" for things like visualization and imagery, meditation, etc.

About.com has many, many pages in this category for a start.

Something I have found that helps a lot with getting better sleep is the use of a sleep mask - and one in particular:
Hibermate from Complete Sleep Systems

The Hibermate has made a big difference in the kind of sleep I get at night, how often I wake up, etc. Not only does the mask provide total darkness, but the little ear pillows muffle noises (but I can still hear the smoke alarm, phone, and doorbell). It is very soft against my face, too, and after the first couple of times using it, didn't feel "weird" or anything.

Another thing that has helped me a lot is my sheepskin. I didn't think I needed one, but my ol' curmudgeon heard it might help and I broke down and got one. It is *wonderful!* I have fewer fasciculations and spasms with it. Search the web for the best deal. I got mine from a site in New Zealand. Even with shipping, it was much less than getting one from the US!

We have a big water bed with a heater. When I sleep on a "hard" mattress, I don't sleep well, I am chilly, and I develop "sore spots" on my joints where they rest on the mattress: shoulders, hips, knees, etc. Some people can't adapt to them, but we've slept on this since the late 70's and I'll scream if someone tries to take it away from me!

Keeping my feet warm with thick socks helps, too. If I notice my feet being chilly during the day, I put on some warm socks and it is amazing how much more relaxed I can be! I sleep in them all the time in the winter, and at least twice a week in summer!

I have a small crocheted lap afgan that I keep handy to keep my legs warm, and I keep sweaters and a happy-color shawl nearby in case my arms or shoulders get chilly. Even in the summer I am apt to wear a sweater to reduce cool air currents on my arms. This in turn reduces muscle cramps and spasms.

We have a treadmill and an exercise bike that I try to get on at least 4 times a week. I really notice it if I don't. The exercise sometimes is agonizing while I'm doing it, but I try to keep my goal in mind - less pain, fewer muscle spasms, less stiffness, better sleep the rest of the week. I don't "push" it too much. I exercise for about 10 minutes 3 or 4 times a day 3 or 4 days a week. I'm not "perfect" and I miss days, but I keep going back and working at it. When I'm in flare, I cut down on my speed and cut back to 5 minutes, but I try to exercise even "through" a flare. I didn't believe my Dr when he first mentioned it. Exercise always threw me into a flare. But when the ol' curmudgeon had his second heart attack and was resisting going to cardiac rehab, I told him I would go too and "do" it with him. I flared for about a week, but I got over it, and started generally feeling better and being able to be more active more of the time after about 2 weeks of it. Believe me, I **know** exactly how hard it is to do this - especially since it hurts no matter how slowly and gently I do it. But I've been gritting my teeth and "just doing it." I stretch carefully first each time, and stretch again every 10 or 15 minutes and yet again at the end. The stretching makes a big difference in how I react to it.

If I can keep myself feeling physically and spiritually comfortable, I react better to the sudden stresses that come up.

Hope some of this is helpful.

Cheerio!
Elizabeth
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  #33 (permalink)  
Old 08-20-2004, 09:09 AM
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blushing I'm crying because I found a home for my Fibro

Thank You! Thank You! Thank You! You are all so wonderful to share your medical knowledge and self-helps with me. In the past I've avoided support groups and other people with chronic diseases because it was always my nature to try and help and with the fibro I have felt utterly helpless. I've read your profiles and I am so very grateful that I found you guys!

I've read through everything three times now and I'm finally going to print out because I want to share with my husband!

Elizabeth, I agree about letting things go and giving it back to God. Ihave felt for a long time that the "terrible" things that happened to me were somehow my fault, that I was being punished. I finally offered up a heartfelt prayer and said, "Thanks, but no thanks (LOL)" No I really was very respectful but I did say that if this was my "cross" to carry, then I would need extra help. I can't do it alone. It's a process, you know "line upon line, precept upon precept." Thank you so much for all the helps you have shared. wow, with your medical background, you are someone I will be listening to. I am going to look into a different mattress because I am finding that mine is causing alot of back and hip pain. What is the sheep skin? A blanket, a coverlet?

Janet, Val, thanks for all the great and friendly advice. You sound as if you've put together a really good combat plan and I am really listening! I love the analogy about the bull. It's perfect. Put that way, I can definitely put things in proper perspective. I am going to remember this one. I found that when I worked (Corporate Trainer), I used alot of analogies, examples and stories in my training programs. It's become my communication style. I use it with my kids and I find that it inspires me and helps me to "see the light." I am going in big letters and stick to walls "You are not your disease, you just live with one."

Lately, I have really felt that I was on the edge. The edge of what I wasn't too sure. My doc (Psychologist) says that I'm on the edge of a breakthrough, I have felt that I was on the edge of a breakdown. But, I'm remember a quote that is framed in my living room, "When you come to edge of all the light you have, and must take a step into the darkness of the unknown, believe that one of two things will happen. Either there will be something solid for you to stand on . . . or you will be taught how to fly."

And about that humor. I read an old Irish blessing years ago and have tried really hard to laugh at myself. (I used to be soooo serious!) "Blessed are those who laugh at themselves for they never cease to be amused." When I have to apoligize for my humanness I always tell people that I know I have friends in heaven, who have gathered around to watch me (Like a funny comedy) with a big bowl of popcorn and they are rolling with laughter - "Come, look at what cynthia's doing now! Oh my gosh, how funny!" I'm going to have some long talks when I see them again. Humor is tragedy plus time!
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  #34 (permalink)  
Old 08-20-2004, 11:58 AM
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Cyn, You are on the way up girl! You will learn all the tools you need to keep you ahead of the game and when you feel low...we are all here to pull you up.

I think when you are first new to this disease it is the hardest, you have to learn there are tradeoffs, and you have to learn that some things might now be impossible for you to do all the time..it will get better!

We all have flare-ups, and some of us are lucky enough to go into a holding pattern...I call it a remission.

I too have broke down at my doctor's and cried and say what did I ever do to get this? and he reassured me, it was caused by nothing I did..my body didn't sabotage me...this is just what life has dealt me, and you will adapt...it is true..I have adapted.

I know alot of fibro people don't like to talk about their illness but I find, woman need to talk things thru...and who understands us better? Yes..another woman.

Val has an extensive medical background and she finds all sorts of great things for us...

I take a holistic approach to my Fibro, since I am chemically sensitive, so I am always looking at stress reduction, exercise, soothing massages, and oils to rub into your achy spots.

So there are so many things we can all learn from each other.

So glad you found us too!




janet
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  #35 (permalink)  
Old 08-20-2004, 01:35 PM
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Cyn,

There has been much suffering in my Church over the ages, and we take a rather different view of things. There is an Akathist by Metropolitan Tryphon (Prince Boris Petrovich Turkestanov) +1934 - but frequently attributed to Father Gregory Petrov, who died in a Soviet prison camp (Akathist - this is a set of prayers that we say standing up Akathist is based on a Greek word meaning to stand up; Kathismas are psalms we say sitting down. The Akathist he wrote is called "Glory to God for All Things." It is pretty long, so I'll refer you to a website that has it: http://www.stchcathedral.org.bh/snippets/akathist.htm

It is often prayed by people who are undergoing various kinds of trials, whether physical, mental or spiritual. I find it extremely uplifting. When I'm feeling my worst, I'll say it every day, sometimes twice a day. It makes a big difference for me. I hope it will provide some help for you, too.

A sheepskin is used to lie on - on top of your regular sheet. It can be washed in cold water and line-dried. It feels soooooooo soft and warm!

Cyn, the people here have many different ways of coping with our fibro. There is no one answer. There are many answers, some of which work for some people, and some of which work for others. But we all know there is no cure - just some days that are much better than others, some days we feel we have taken some baby steps against this disease. Print out or copy-paste the various posts that seem to help you the most and keep them for future reference. With the brain fog that goes with this stuff, you will forget!

I have to make lots of lists and take lots of notes. I even take notes on my computer when a friend calls me on the phone. That way I can follow when we have our next conversation and sound like as much of a ditz as I know I really am!
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  #36 (permalink)  
Old 08-22-2004, 12:09 AM
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Chin UP!

Hey, thanks all for the "chin up" advice.

Elizabeth, I went to the akathis website you mentioned and I found it very moving. What poetry!

I was raised southern baptist and am now LDS so my spiritual repertoire is quite broad and open minded. I wasn't sure what I would find but as I read through the akathist, I was moved to tears and the feeling of warmth and love came over me. It's wonderful to know that we can edified by such poetry and even friends like I've found here.

I've been able to laugh at the neighbor nastiness and chalk it up to one great big hiccup
but then I will have moments of weakness and cry all over again. I wish I could find a happy middle ground. I would love to have some smooth waters to sail through for awhile. I know I shouldn't hybernate to create the smooth waters, but I can't think of another way to keep from getting into trouble. Sometimes I wish I were grownup. Although I am 40+, I sometimes I feel like a little girl in an old body with one foot in mouth. Hey, guys I'm losing control again. Gotta go!
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  #37 (permalink)  
Old 08-22-2004, 06:43 PM
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Re: Chin UP!

Quote:
Originally posted by cynstenquist
[FONT=arial]. I would love to have some smooth waters to sail through for awhile. I know I shouldn't hybernate to create the smooth waters, but I can't think of another way to keep from getting into trouble. Sometimes I wish I were grownup. Although I am 40+, I sometimes I feel like a little girl in an old body with one foot in mouth.
Oh boy..did you reach into my head, an pull out my soul, or what?? Or maybe you have been recording my sessions with my therapist? Yeah, that must be it!!

Cyn, I know just how you feel... and you're so, not alone. It's an awfully hard adjustment, and it's really no wonder that we don't find ourselves backslidingto the emotional low points more often that not!

But what is important is that we keep reaching out, and being open, and allowing ourselves to ask for help when we need it ( no small task) and to accept the help when it shows up.. ( easier said than done) ...

Hybernating, and isolating is part of the disease..and it only cycles to the depression, which cycles to the disease, which cycles to the depression.. shall I continue?

We're here.. on this board.. and if the old fibro thread is still open for perusal.. feel free to look over those posts too.. I'm sure you;ll see where we came from in comparisoon to where we are now is a positive journey for the most part...

My brain is abit foggy now..so I hope I'm making sense.. All I can hope to do here is edit for typos.. I just wanted to let you know, you touched a place deep inside me with your words.. and I had to respond. Hang in there!!

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Old 08-23-2004, 04:29 PM
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Cyn - I don't have all the same problems you do - don't have the burning pains as much - but I have many similar problems. I get muscle spasms inside my pelvis that cause enough pain to bring me to me knees - literally - and rise me up screaming in the middle of the night. Now, when I have the spasms in my ribs or back, I usually can apply some pressure and get them to let loose. But inside my pelvis? I've tried various things (let's not get too graphic here) but nothing works. I just have to endure it until it lets up. I think I hit my lowest low when I was not even able to keep up with my home business for over a year. DH was convinced I was dying, and wanted me to be in a nicer house for my last months. We moved here in 2000, and I spent most of 2000 and 2001 sitting and staring into space. Couldn't drive, couldn't do grocery shopping, etc. I was on so much medication for pain I couldn't tell the difference between "drug fog" and "brain fog." Couldn't sleep, couldn't wake up.

Finally, I just got sick and tired of being sick and tired. I went on line and found out about the guaifenesin and thought I'd try it - it wasn't going to hurt me, and it might even help. Got my MD to rx it for me, and started taking it. Insurance drug card covered it, so it wasn't financially onerous. After a while I started having some good days, then a whole series of them. And I decided I'd rather hurt and have my brain, than hurt and not have my brain - the pain meds and muscle relaxants weren't doing that much for my pain. So I stopped taking them.

Now, after 2 years of being on Guai, I'm starting to take my life back a little at a time. No more pain meds on a regular basis. I go weeks without taking any. I can "deal" with the pain most of the time without pain meds. Only take them on the really "bad" days - maybe twice a month - and then only at night so I can sleep better.

I just "decided" to ignore some of the stuff I was so depressed about. Heck, if I can't do one thing, I can do another. On the days I can't sit at the computer for long, I can go do something else. I'm starting to do more exercise, and it helps a lot. I have a couple of hobbies that I can pour energy into. And I am able to spend time with my grandchildren. I still have a few days a month that I just "sit and stare." But they are much less frequent. DH had a stair lift installed for me, but I seldom use it anymore except to get the groceries or big sets of medical records up into the house (we have an "upside down ranch" with the main floor over the garage and basement - have a 14 step flight to get onto the main floor).

My solutions won't necessarily be helpful to you, but some things may help. A lot of it, however, comes from inside us when we make the decision that we won't let this disease take any more of our life away without a fight. It took me 20 years before I made that decision! (Some of us are duller than others!) But now that I've made it, I'm really irritated with myself that I didn't make the decision about 15 years earlier! No, it's not a cure. Yes, I still feel "crappy" a lot of the time, and yes, I'm still limited in how much and what I can do. But I feel much differently about it, and I'm feeling better about myself. I'm doing more than I did a year ago, and I hope to continue to make some kind of positive progress.

But even if I don't and even if I lose the progress I've made, I'm different inside and I'll handle things differently than I did in the past.

My DH has been sooooo supportive - and I know just how fortunate I am. I've met and corresponded with so many people whose husbands, family members, friends all think they are "faking it" for attention. And employers of people with fibro often think the employees are slacking off, and will fire them or demote them. At least I have my own business and can work as much or as little as I need to on a given day. DH put internet cable attachments beside the bed and beside my recliner as well as in our offices. So I can literally do my work wherever I need to be that day - in bed, in my recliner or in my office. I know not everyone can do that, but it works for me, and I am very grateful to God for making this opportunity available to me!

Tonight "feels" like it will be a pelvic spasm night, so I'll probably sleep in the living room in my recliner so I won't disturb my DH. I'm grateful that I usually can "tell" when these are coming on. There's no point in worrying DH, because he can't do anything about it, anyway.

This board is a wonderful place to vent because we've all "been there, done that, got the tee-shirt, and wore that sucker out!" This is a "safe" place to just vent, but lots of times you can find a suggestion or a hint or two that will work for you.

Val - have you tried "Jolt" cola for the brain fog?? LOL! I found it works better than coffee for me. Doesn't taste as good as Coke does, but it has more caffeine.

Cheerio!
Elizabeth
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  #39 (permalink)  
Old 08-26-2004, 12:33 PM
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I'm Back!

It's a better day. My boys started school this week and the house is finally quiet but now I have the daunting task of cleaning which always causes headaches (no LOL!) I went with a friend last night to help with a church service project and two hours later my eyes were hot, my shoulders and neck were aching and my head felt like it was in a vice and all because I was bending down to pick up the clothes to sort.

I have found that when I do anything strenuous that causes my eyes to feel hot and I sweat on my face, the headaches get worse - alot of pressure and temples are so painful it feels like a vice around my head. Any ideas for this? I took something to help relieve pain (Lortab) and while it helped me sleep longer than 2 hours, I still have the headaches. Ouch! I can handle a toe stub or a bruised knee better than I can handle any pain around my head and neck and face. Ouch!

but, other than that, Hey I'm FINE! I get to relax a little bit today (I have nowhere to be), do some painting and let kids do dinner. Around my house we call these days, "Root little pig or Die" nights. My youngest hates it but I love it! Well, gotta go and get me a bite - haven't eaten yet today.
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Old 08-26-2004, 04:54 PM
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TIP OF THE WEEK FOR FIBRO PATIENTS

Although antibiotics and other drugs are often used to treat parasitic infections, this approach can pose a threat to overall health by upsetting the immune system, according to Dr. Leo Galland. Those who are already immunosuppressed or chronically ill should be especially careful.

Dr. Leon Chaitow agrees and advises pursuing a comprehensive supplement approach rather than medication. "In many cases, antiparasitic prescription drugs have not proved to be lastingly effective," he points out. "They may diminish symptoms for one or two months, but the symptoms later return with full force." Parasites can be fought with high-dosage probiotic substances such as Lactobacillus acidophilus, Bifidobacterium bifidum, and Lactobacillus bulgaricus. Treatment may last from eight to twelve weeks.

Dr. Chaitow [anecdotally] reports an 80% success rate in cases of people afflicted with parasites and yeast overgrowth, using this method.

I MYSELF TRY TO USE NATURAL REMEMDIES TO HELP ME GET OVER A FLARE UP. janet
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