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help for my family
13 Replies
carrie lee - October 9

Does anyone have some good links to educate my husband on FMS? He has been really supportive but I dont think he understands why I have so many bad days and i am at a loss to explain it to him. I am afraid he is going to tire of this quickly, I know i already am.

 

TERESA - October 9

This is a very good site for information. WEB MD also has a lot of easy to understand information. I printed off a journal of information for my family.

 

Stephanie417 - October 10

Hopefully your husband is more understanding than mine.. he thinks im a hypochondriac most of the time I think.. He says that he tires of me having a new complaint every day.. but he has no idea that hearing me complain daily is better than feeling these things every day !!.. He has not taken the time to read up on it and has no understanding.. Take your husband here.. let him read some of the posts or just the symptoms and explaination on this site.. it is pretty simple to absorb I think..

 

Virg - October 11

Dear Carrie lee, my guy Fred doesn't go for reading on line about FMS etc., However he does open up to a point on a mans feelings about FMS, How long have you been united? How long have
you been dealing with FMS.?What's the worst thing your hubby say when you're
mentioning how you feel?

 

carrie lee - October 11

Virg, We have been maried for ten years. It's not that he says anything bad I just know he doesnt understand why somethings may affect me terribly one day and not the next and with the weather getting colder I am counting my good times by hours not days. My hubby is great I think I put more guilt on myself for the extra load he has yo carry than he does perhaps. I just dont know how to explain it to him.

 

Gmasboy - October 11

My husband is understanding, but I know that he doesn't fully understand this whole FMS thing and tell the truth nor do I at times...
WebMd is a good place to go....

 

maleighamylove - October 13

I let me husband and children read all of the info on fibrohugs, he got the point fast.

 

AmberRose - October 13

use the site from the post regarding best article....

 

carm - October 13

There is a FM online newsletter that is free and you can subscribe to it by email with a lot of different articles on all sorts of aspects of FM. You can even ask a question or two. It is pretty informative. My husband also is pretty understanding but yet doesn't quite get it. I am not sure if you can surely understand unless you have it and I wouldn't wish that on anyone. So that is the tough part.

 

deannamarie8fan - October 20

My husband has been great, but I think he is getting frustrated with having to do everything (laundry, dishes, housework, etc) I feel so bad & so useless sometimes. I try to keep a positive attitude, but its very hard. My rheumatologist gave me a really good handout from the arthritis foundation, you may want to check out their website. Usually they will send the information for free, or for a nominal fee. Good luck.

 

JJ1 - October 20

My husband has genearlly been supportive but blew up last night. He took the kids out for the evening and since I was alone, I was really enjoying the peace and quiet. I did a little straightening up, but mostly used the opportunity for some "me time". Well they didn't get home until 11:00 pm and my husband has this routine he does every night of setting the table for breakfast the next day and getting the coffee pot set up. It takes like 2 minutes to do this, not really a big deal. Well, he blew up at me because he expected me to do this since he was out with the kids. Honestly, it never occured to me. He is extremely angry at me today still about this. The amount of anger does not seem to match the "crime" so I think he is really voicing anger about me not doing much in his eyes. And here I thought all along he was understanding. My not doing anything amounts to me getting up at 6:00 am to get my high schooler up and ready for school, then getting my middle schooler up, taking her to school, going to work until around 2:00 pm to be home when the high schooler gets home. I either then work from home or do household chores, and after that start my evening driving/carpooling for the kids, then help the kids with homework, fix supper, go to a kid sporting event if there is one. I pay all the bills and take care of our finances. There are times where I just feel so crappy I let the household chores go, and that happened earlier this week when I was just so exhausted and weak I couldn't do anything. So I guess this week things just haven't been getting done and I guess I should've used my free night to get caught up on the chores rather than using it to chill. Just thought I would vent. Thanks for "listening", lol.

 

barbar - December 17

Let's see if we can't get some more help for Carrie Lee and her family, and especially some info to help her husband understand about this debilitating disease.

 

barbar - December 17

bump

 

Lynne-FT - December 18

The Letter To Normals
Hello Family, Friends, and Anyone Wishing to Know Me,

Allow me to begin by thanking you for taking the time out of your day to spend some time with me and get to know me better. A person’s time is their most valuable asset and yours is appreciated.

I want to talk to you about Fibromyalgia (FM) and Chronic Myofascial Pain Syndrome (MPS). Many have never heard of these conditions and for those who have, many are misinformed. And because of this judgments are made that may not be correct… So I ask you to keep an open mind as I try to explain who I am and how FM/MPS has assaulted not only my life but those whom I love as well.

You see, I suffer from a disease that you cannot see; a disease that there is no cure for and that keeps the medical community baffled at how to treat and battle this demon, who’s attacks are relentless. My pain works silently, stealing my joy and replacing it with tears. On the outside we look alike you and I; you wont see my scars as you would a person who, say, had suffered a car accident. You wont see my pain in the way you would a person undergoing chemo for cancer; however, my pain is just as real and just as debilitating. And in many ways my pain may be more destructive because people can’t see it and do not understand....

Please don’t get angry at my seemingly lack of interest in doing things; I punish myself enough I assure you. My tears are shed many times when no one is around. My embarrassment is covered by a joke or laughter, but inside I want to die....

Most of my "friends" are gone; even members of my own family have abandoned me. I have been accused of "playing games" for another’s sympathy. I have been called unreliable because I am forced to cancel plans I made at the last minute because the burning and pain in my legs or arms is so intense I cannot put my clothes on and I am left in my tears as I miss out on yet another activity I used to love and once participated in with enthusiasm.

I feel like a child at times... Just the other day I put the sour cream I bought at the store in the pantry, on the shelf, instead of in the refrigerator; by the time I noticed it, it had spoiled. When I talk to people, many times I lose my train of thought in mid sentence or forget the simplest word needed to explain or describe something. Please try to understand how it feels to have another go behind me in my home to make sure the stove is off after I cook an occasional meal. Please try to understand how it feels to “lose” the laundry, only to find it in the stove instead of the dryer. As I try to maintain my dignity the Demon assaults me at every turn. Please try to understand….

Sleep, when I do get some, is restless and I wake often because of the pain the sheets have on my legs or because I twitch uncontrollably. I walk through many of my days in a daze with the Fibro-fog laughing at me as I stumble and grasp for clarity.

And just because I can do a thing one day, that doesn’t mean I will be able to do the same thing the next day or next week. I may be able to take that walk after dinner on a warm July evening; the next day or even the in the next hour I may not be able to walk to the fridge to get a cold drink because my muscles have begun to cramp and lock up or spasm uncontrollably. And there are those who say “but you did that yesterday!” “What is your problem today?” The hurt I experience at those words scars me so deeply that I have let my family down again; and still they don’t understand….

On a brighter side I want you to know that I still have my sense of humor. If you take the time to spend with me you will see that. I love to tell that joke to make another’s face light up and smile at my wit. I love my kids and grandbabies and shine when they give me my hugs or ask me to fix their favorite toy. I am fun to be with if you will spend the time with me on my own playing field; is this too much to ask? I love you and want nothing more than to be a part of your life. And I have found that I can be a strong friend in many ways. Do you have a dream? I am your friend, your supporter and many times I will be the one to do the research for your latest project; many times I will be your biggest fan and the world will know how proud I am at your accomplishments and how honored I am to have you in my life.

So you see, you and I are not that much different. I too have hopes, dreams, goals… and this demon…. Do you have an unseen demon that assaults you and no one else can see? Have you had to fight a fight that crushes you and brings you to your knees? I will be by your side, win or lose, I promise you that; I will be there in ways that I can. I will give all I can as I can, I promise you that. But I have to do this thing my way. Please understand that I am in such a fight myself and I know that I have little hope of a cure or effective treatments, at least right now. Please understand….

Thank you for spending your time with me today. I hope we can work through this thing, you and I. Please understand that I am just like you… Please understand….

Copyright of www.fibrohugs.com Written by Ronald J. Waller

 

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