For me I explain to them it's like having a fever. The body aches just don't go away. Most days i feel as if my husband just doesn't understand. I feel like he doesn't care because he hasn't looked it up or anything...then i notice small things. He will go to hand me a jar and then stop and open it because he knows my hands hurt. Or I hear him telling someone he's happy he could pick up another job so I can stop pushing myself. He's been working from 7am till 1am for two weeks and hasn't complained once. I don't think anyone can really UNDERSTAND what we are forced to go through. I think we just need to notice the small things that they may say or do. Instead of thinking they arn't being supportive. They don't know how to deal with this any more than we do. I hope this helps. Blessings, Janis
I do everything at my house as well. I just quit working a couple of weeks ago because i was unable to continue. I think my husband is much like yours where he just doesn't get it. I'm sure it's not easy raising an autistic child with this illness. You are so strong! I too struggle with feeling like a failure, but this site is helping me with that. It stinks. I don't deserve it. You don't deserve it. Neither does your family. They also don't deserve to grow up without you. I'm sure they may have a strange way of showing it, but they love you. Most familys don't support mom enough, they don't have to be sick. I'm learning to love me despite this illness. I know that they would rather have me be here loving them while I'm sick, than not having me here at all. Those are the only two options. I know that now. I hope this helps you. I'm here if you want to ever talk! We are not the only ones struggling with these issues, They made it we can too!
jennyrozz said:
I have had Fibro for several years now. I have 4 kids, 3 are teenagers, 1 is 11 with Autism. My family honestly does not understand Fibromyalgia and the kids don't really care. I basically do all the housework and errands and they don't do anything. They get very tired of me being sick and tired and my husband who tries to understand Fibro thinks that I will have an off day and get through it and get over it. I did GF for almost a year and saw a little improvement than went back to my normal eating habits, mostly due to emotional eating. He thinks GF is my answer and I guess I just don't have anyone to support me and there are days where I feel like its better if I wasn't around because I feel like I am such a burden and a failure.
Jennyrozzs,
Maybe you need to stop pushing yourself so hard. Try telling your teens that if they want clean clothes they can wash them, or if they want to eat they can fix it. You don't have to be a martyr. Give them all chores to do. Then name your dust bunnies and keep them as pets. So what if your house isn't spotless. If someone doesn't like it tell them they can clean it.
jennyrozz said:
I have had Fibro for several years now. I have 4 kids, 3 are teenagers, 1 is 11 with Autism. My family honestly does not understand Fibromyalgia and the kids don't really care. I basically do all the housework and errands and they don't do anything. They get very tired of me being sick and tired and my husband who tries to understand Fibro thinks that I will have an off day and get through it and get over it. I did GF for almost a year and saw a little improvement than went back to my normal eating habits, mostly due to emotional eating. He thinks GF is my answer and I guess I just don't have anyone to support me and there are days where I feel like its better if I wasn't around because I feel like I am such a burden and a failure.
The only teen in that house that has an excuse is your Autistic son. The rest should be pulling their weight whether you were sick or not. That's just one girl's opinion. I actually got on to address the last sentence. It hurts my heart to hear anyone referred to as a failure, even if they say it. I've said it before but my house growing up flew with those words. It took years of work and inner strength to teach myself and my Mom that we weren't burdens and failures. Illness isn't something any of us asked for or can control. None of us are in this condition by choice. If you are still waking up each morning and moving you are accomplishing much. Some mornings I can't even manage that. That doesn't make me a failure , we like to say ' I've been attacked.' This disease is like a thief. It slowly steals away pieces of you. No one would say you had failed if someone came in and robbed you. Do what you can when you feel up to it. Put the teens to work. Trust me they won't let themselves starve. Most of all Don't give up on yourself. You deserve better than that. No one knows you better than you, so you have to be your greatest advocate. I'm praying for you. Be blessed
Hi BippityKate,
In my own experience with friends and family and trying to explain to them what it feels like to have Fibromyalgia, it has been difficult. All that I could do is try to be my own advocate and keep them informed by sharing information about what it is and how it affects me as a person. They will say that they understand, but they really don't because if they haven't experienced this condition themselves they really don't have a clue. All that I could do for myself is to keep a positive mindset, whether it be using quotes, positive affirmation, mindfulness, etc. But every person is different and deals with this condition in their own way. I surround myself with people who are understanding, who have compassion, and also suffer from this condition. This page is a great way to get the support that you need when it seems like no one from your friends or family understand what it's like to have constant chronic pain and fatigue. My heart goes out to you and I truly do understand what you're going through. If you ever need someone to talk to, I am here for you. Gentle hugs!
Explaining has been a long very long process for me. I tried for 15 years. But it did not register with my family until I had a nervous breakdown and was in the psyche ward for a month. Finally I got sleep because after two year of horrible sleep they knocked me out with some Ativan. Everyone had to pitch in and help because my son was only 2 years old. It took my mother, two brothers and sister to relocate me and get me on disability. My younger brother was kind and insisted I stay with him so I could just focus on being a stay at home mom. They also diagnosed me with bipolar and that was a nightmare to straighten out, I survived and my family totally understands now for the most part
Print out the information and let them read it.