# Roller Coaster!!!



## Debbielee (Jun 14, 2000)

Hi everyone,I really do not know what to do. I have had 4 real bad days. Forced myself to work today and only managed a half a day. i have gone from working 60 hours a week to 20 in the past few months. This FM is getting me down. I have to work! I dont know how long my husband will remain understanding. He should as i have supported him many times in the past. Doesnt mean he will.Other people too---they just dont get it--cant say i blame them cause i dont get it either.i am feeling useless. Has anyone had this feeling and what did you do to overcome it?I just want to stay in the house till spring cause it is sooo cold and every thing i do hurts. isnt FM suppose to take a break now and then?Thanks for letting me vent.Debbie


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## mamamia (Jan 21, 2000)

Deb,I can so relate. I HAVE to work too. I've been trying to work at home with my massage therapy but I am starving to death, so starting in mid-January, I am going to go back to accounting at my old job two days a week. Then in April the Health Resort where I work as a massage therapist opens, and I'll work there two nites a week as well til Nov.I am already exhausted just thinking about this workload. I really am a good homemaker, I can cook, sew, clean, bake, craft and I love the massage therapy too, but I need more money.I can relate to the husband thing too.I don't really think he values the work I do keeping our home really nice. He always thinks that he did it in his old house before we were married and worked full time. But he went out to eat most nites, the dust was 2 inches thick, and though the house was straightened up, it wasn't really that clean. Plus any decorative stuff was left behind by his ex wife I think.Last nite Deb, my legs hurt so bad, I felt like I had run up a mountain. Really. I got no sympathy what so ever. Do these people know what it's like to feel like s--t most of the time. How about offering to make me a blankety blank cup of tea??? NOTHING!You know you have Fibromyalgia when you notice that you feel good. Ventfully yours,mama-ps Hope you are feeling better today, sweetie.


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## squrts (Aug 14, 2000)

fortunately my situation is a little different,my wife works,im on ssi.being a woman,she knows how much i do here.weve beed "praticeing"this for more than 20 years,so have had lots of time to get it right.what helped most was when i quit drinking.programs for that are really just, lessions for living.we both went and have learned most valable copeing skills.ive often thought everyone should have the opportunity to take these lessions.thats where the term"fortunate alacholic"comes from.i wish you the best.denny


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## weener (Aug 15, 2000)

Hi Debbielee:Sorry to hear that you're going through a rough time. I too am fortunate that I have an understanding hubby who supports me financially and emotionally. We are not rich, but we have learned to do without many things over the years since my illness. I think as human beings we need a sense of accomplishment. I had all those feelings at the beginning. My self-worth, esteem whatever you want to call it just went down. I couldn't do the things I use to do. I fought it and was very hard on myself. Over the years I learn that my body is telling me what I can do and how much I can do. First I had to grieve for my body then I accepted the fact that I may never do some of the things I use to do. This step was very difficult. Then I met my best friend who turns out has fm too. We would talk on the phone every day and cry and ###### about our aches & pains. That helped. Then through educating myself and trying different things to help deal with the fm. You will have good days and bad days. I find for myself I do much better as soon as spring arrives. I'm not sure how understanding your employer would be, but you might try explaining to them about this condition and that you have to cut your hours back. Tell them that once the condition is under control again that you will be able to go back to regular hours. Get some literature on fm and show it to your hubby and boss. The more you educate your husband the better. If things don't get done around the house don't worry about it too much (dustbunnies have never run away). But most importantly you have to take time for yourself, do whatever it takes to make yourself better. And lastly, I prayed a lot. It might not be everyones cup of tea, but for me it got me through one day at a time.


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## Debbielee (Jun 14, 2000)

Thankyou for replying,Mama it sounds as if you no what i mean. I hurt sooo bad yesterday. my husband just gives me that look. He trys,but for 16 years he has been use to me being able to do it all.He is a recovering alcholic and owes me at least 10 years of work lol--in other words i supported him. It is early yet in this process for me and i will ahve to wait and see how he does. Weener you describe what i think is the hardest for me--my self worth has been damaged as i adjust to the fact that i can no longer do what i use to. I am waiting for spring as this harsh winter is making things worse. I have already cut my hours--i work in health care--you would think they would be understanding but that is not always the case. They are to short handed to be understanding.But alot of this is just me feeling worryed over what people think and having to say i need to slow down. A year ago i never took more than an aspirin for aches and pains--now that is not the case--i worry about that toh yes weener--i pray--there is no other way for me.Again thank you all. I am a bit better today.The pain and spasms are more managable.Debbie


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## Feisty (Aug 14, 2000)

Hi Debbielee and everyone!Sorry to hear it's so rough for you right now Debbie -- I know where you're coming from. Mamamia took the words right out of my mouth! Been there and done that! Noone seems to realize that we are hurting---BIG TIME -- and all the time. Because we don't look like "death warmed over" (pardon the pun), they think we just want some attention. Brother!! My hubbie gives me the same "rolled eye" look whenever I mention anything. For instance---today I went to see a specialist about my hand and wrist. I have severe tendonitis besides tennis elbow. He did a cortisone injection (painful!!!) and put it in a splint---and see what happens in the next 4 weeks as far as pain goes. Anyway, it is now 9:30 p.m. and hubbie still hasn't said one word about the splint or anything---makes a person feel real good, doesn't it? Hang in there. The more info you can put together for yourself and for your family and boss, etc. they more apt they are to at least try to understand it a little. I'm with Weener----in Spring when the weather is warmer, I will feel somewhat better. Although the humidity does it's job on me, the warmer weather is a blessing. Take care---I'm thinking of you.Karen------------------There is a silent strength within each soul, and that strength is multiplied for those who remember that they do not walk their path alone. Thomas J. Edwards


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## Debbielee (Jun 14, 2000)

Hi Karen,I am praying for spring! Humidity in any season is really rough on me, i am learning. But cold and humid is just too much.I can relate to the tendinitous---have had the ole shot too :-( Hurts like #%#%!I hate to tell ya this---ill never do it again as the relief is very temporary. The brace was wonderful till i got the FM--then it hurt to wear it. I will say after wearing the brace for a year it did get much better.Just wait till these husbands get sick--you would think the world was ending!!Hope your doing better karen---all settled in your new home?Debbie


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## Guest (Jan 8, 2001)

Hi Debbielee and all, I read an article recently at Lisa Lorden's site at About.com, about how we need funerals to grieve our lost selves.







It is a continual process, with the ups and downs. I am single with 2 children and live on disability. We got the new "raise" this month, and with the federal raise, comes the states take it away. I lose food stamps and my medical incurment goes up, so I "lost" two dollars with the "raise". My ex-husband helps with grocery money for my son (I think he does it so he can have the break!) or I couldn't afford to have him stay with me. My daughter is on break from college and has to help out too, or she couldn't stay here. If I want to do extra things, like go to a movie, I don't go anywhere and save my gas money for the event. So I know how finances can add even more stress to the illness. The thing that is hard too is the isolation. When I'm not doing well and can't get out, the lonliness could drive me insane. Thank God for telephones and computers!! But, in it all we can find happiness if we don't let our illness become who we are!!!! We are individuals with illnesses, not illness attached to people. Make sense? We can make choices for ourselves that make our lives better, and learn new coping skills to deal with the part of us that "died". Anyway, didn't mean to write a book, I guess I had alot in me!! Thanks for listening.







DeeDee


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## Feisty (Aug 14, 2000)

Hello everyone! DeeDee, I think you're on to something here. Let's hold a mass "funeral" and mourn our losses and celebrate a new and better beginning for each one of us. We could all use an "upper". DebbieLee, Yes, we're as settled as we can be, I guess. The Duplex is nice. We have a nice Livingroom adjoining the dining area and kitchen and a back hallway wide enough for a washer and dryer and a closet. Upstairs is a larger bedroom and two smaller onesand a bathroom. The two smaller bedrooms are being used for "his and hers" offices, etc. Larry has one and I keep my computer and manicure table in the other. And believe me, that's all that fits in there, too. They are small. We have closets, etc., but they are small and shallow, so it's hard to store things. About 2'3's of our stuff is still in boxes in the basement. There's just no place to put them. The kitchen cupboards hold the basics and that's it. It seems like every other day I'm in the basement looking for another one of my kitchen utensils to use for the day!! Oh well, this is only a temporary place. We have a year to decide what we want to do. We're leaning towards either looking for a newer home already up, or building one. The home can be smaller, but Hubbie needs a 5-stall garage for his toys!! Go figure! It's wonderful being near the big city---so much handier for everything. There's still a lot of things we don't even know about around here, so it will be fun "discovering". Been feeling "under the weather" the last 3 days. Have a horrible headache that just won't quit. Thought it was a migraine, but the meds don't kick it out. I'm wondering if I picked up a virus--maybe the flu bug? Today I am really "bummed" out by it and as white as a ghost. Hope it's not the flu--I don't want that. I had my flu shot, but it wasn't available to the general public until late (December), so it's possible I'll still get hit with the flu "full force". I hope not. Take care. Karen


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## Debbielee (Jun 14, 2000)

Sorry karen to here your not feeling well--i hope it isnt the flu--it may not be, there is alot of sinus stuff going around.DD--are you on disability for the FM?You hit the nail on the head about not letting the iilness define who we are---that is something i am trying to get away from--as i am new to it--it has been my focus but i am breaking free of that i hope.Take care all---i am on the downside of this latest flarup--thank God.Debbie


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## Guest (Jan 11, 2001)

Hi Debbielee, I am on disability for CFS, but I also have FM. It took me awhile to not let this illness control my life. That doesn't mean there's not troubled times when I'm in a real low. It is very hard to remember then! I'm not a very patient person either and I've had to get better at that to just ride out the "crashes". I also have an excellent Psychologist that was part of the CFS Clinic in the Rehab center I used to work in, so that is a definite plus for me!! She taught me new coping skills, but again when everything "crashes" I just have to ride it out. Anyway, hang in there, and always remember a new day will come. I also have this sign hanging on my bedroom wall:My Secret Is:I have found the places within me that illness cannot touch. I have learned to honor them. by Floyd Skloot







DeeDee


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