I have been struggling with fibromyalgia for some time now, and I am going through a particularly bad flare this week. I have a two year old and a five year old that I have to pay someone to watch most of the time that my husband is not around because I am too exhausted to care for them. I feel the guilt of being such a unavailable mother (and wife) on top of the frustration of this disease. Could any of you share moments of similar struggles and how you deal with it/get through. I have visions of my children someday saying, "Yes, and my mom, she was never there and always sick in bed..." It breaks my heart.
You are not alone, I also have a 2 and 5 year old, both boys. I find it extremely hard to cope when they want to go outside to play or go in the pool and I have to say No, Mommy doesn't feel good. I know what you mean when you say it breaks your heart.
Sometimes when I feel o.k. and they are "calm" I take them to lay down with me and I read a book to them. When my 2 year old is napping my 5 year old and I have a cartoon and snack time in my bed. He enjoys this time of just us and I get to lay down and rest before I have to try to function again.
I don't know if I am coping all that well, I also fear what they will look back upon as their childhood. The times when my son asks "Why can't it be like it used to be?" or "Why do you have to be sick?" are my lowest points.
I find my peace on this board surrounded by others who walk in my shoes each day. They truely are the only ones who really understand.
I am with you guys, I have 2 boys, they are 2 and 5, and I stay home with them. I recently took a break, I went and stayed with my sister from mon to sat morning, and I came home that afternoon. My marriage was not doing well, and my husband had told me he was done with me. My heart was broken, and I decided that being sick, battling fibro and the chronic pain, and my husband was too much, I could not do it anymore. IT was too much, and I had started to believe what I was being told, I am not a good mother or wife. WRONG, I am a great mother, and you all are too, and we are great wifes. WE miight be even better than most because we have to deal with IT all. We constantly have in our minds that we don't feel good, keep the house picked up, we don't work (some of us do, but barely make it) and we have that guilt to boot. Along with copays, medication costs, and so much more. We worry constantly. While I had the break, I saw glimpses of life again, I enjoyed things, like having a cup a coffee in the morning, taking the boys to the park, music, books, little things that I forgot about. I forgot about myself, and how it felt to dress well, wear makeup, paint my nails etc.
I was pretty much hysterical the whole time thinking my marriage was over, and I had a fibro flare up on Friday and was in bed all day. My dad got to see what I was like, and my husband called my dad, my dad told him I was sick, needed medication, was not an addict, and told him that he was not good to me. That was HUGE. My husband got upset, and said he has never hurt me physcially and my dad said no, you have hurt her emotionally, she is very sick. My husband believes he gives me it all, I am lucky to stay home with the boys, we are financiallly strapped more than we ever have been, but he believes that with being able to stay home with the boys he gives me everything I need. I am with the boys 24/7, and my husband might see us a couple of hours a week. He is busy with work, meetings, golf, and sleeping. He has a different schedule than us, we are getting up as he is going to sleep, and we are going to bed as he is going to work or getting up from a nap, or getting home from golf and the lounge, or hanging out with the business contacts or buddies. It is a lot. I have done this now for 5 years, and my husband has been busy like this since I met him close to 10 years ago. Typically my husband sees the boys 2-4 hours a week. We don't have dinner together anymore, maybe once a week if that. I don't cook like I used to, it is soft food for me, and easy food for the boys. My husband eats out a lot, or at his hotel. It slows down a little in October, and as winter comes, but my husband seems to sleep in the afternoon more into the early evening.
I guess I am not sure why I am writing this all out for except you guys are not alone. It is a lot to have small children, stay at home, and then be sick too. You appreciate even the smallest thing when something is given to you, or you have a break. It was my worst fear, I always said who is going to take care of me if I get sick? When everybody had the flu, or a cold, I never guessed that I would be sick almost everyday. Maybe once a week my husband might take the boys to the park or to look for trains. I try to lay down, or clean, we have a big house, and I cannot keep up with it.
One of the things I am greatful for is my pcp, I have the medications to treat my pain, I am still in pain but I can at least get it down to a 4 or 5, and take care of the boys. Today, I am about a 6 or 7 right now, and I am about to cry, but hopefully the muscle relaxant will help and the vicoprofen. A lot of people have not heard of vicoprofen, but I have been on it since last September, and it has the 2 pain fighting components, codeine, and ibuprofen.
I was wondering how it started out for you guys? Also, what are your doctors prescribing? We are so similiar in that we have small kids, and battle fibro. Do you have any other illnesses, like tmjd, or migraines, I have a couple and will get into them later maybe.
I love writing on here, I do not feel so alone. My husband has printed off everyone of my posts, and would try to use it against me. But everything I have written is the truth, honest truth, and I have been able to get it out, and otherwise if I didn't, I would feel like I would explode. I do not have many friends, maybe 1 and my sister. Do you guys have anybody close to you?
Please keep writing. This is a wonderful place. Welcome.
As I sit here right now, in a flare up, my kids want to go outside and play, and my arms and legs are throbbing, it is summer, and I just want to wrap up in my heating blanket. The worst thing that could have happened to me was get sick, come down with this illness, and some of the others that come with it. Having boys they want to go, and go. I can't do that anymore, most of the time they understand, but it is still hard.
I have had to pay a babysitter to watch the boys while I have been in pain, or have had to get on the phone, or run errands. If I push myself too much I get even more sick, my limit is about 2-3 hours of activity, like shopping, or cleaning, or just standing on my feet too long, and I am in trouble.
I hope you are doing OK. My last flare lasted about a week and a half and I'm slowly coming out of it now. (but still very little energy) I am seeing a specialist now, and I am not on any narcotics but I am a recovering alcoholic and avoid them at all cost. I am on a bunch of prescriptions including antiviral therapy (valtrex at 1000mg twice a day for six months). I also am on a bunch of supplements. I am lucky that there is a fibromyalgia specialist in my city. (who my insurance covers)
This illness stinks, and even though my husband is very supportive, I really don't think he totally understands what is going on. I can't believe you can survive with your husband traveling and taking naps all the time. You're the one who should be in bed!
Your post touched me in so many ways. I could have written it myself. I have a 2 yr old boy and had to bring in help with him when he was 6 months. This is never how I imagined being a mom! I have dreams of being so active and fun as a mom, and I will never give up hope on them!
I am so sorry your husband is not supportive. Mine is and it has kept me going at times. My parents and siblings are not at all...sounds like yours are, so there ya go! I am surprised that your husband can only spend that amount of time a week with his kiddos, but finds the time to dig for your posts and print! It bothers me that you are in such a unsupportive/controlled environment - that has to make the pain worse. Even so, I sense an undertone there...of great strength and intelligence. Good for you. You know the truth and do not need anyone else to confirm it!
i've had fibro for 30+ yrs now. my arthritis..degenerative bone, disc disease..started about the age of 19.
the way i handled my children was to lie out in a lounge and read a book while they were playing. children need lots of fresh air, so i did'nt take that away from them.
take care all....bevann
Hello! I'm new here and just wanted to share my thoughts and experience with FM.
I am newly Dx (as of tuesday). I thought (and was dx as having) Lupus or Mixed Connective Tissue Disorder since 1999 and my new Rhuemy said no It's Fibro.
I have a 6 yo and a 14 yo step son. It is a handful and its hard when they dont understand why mommy is taking her second nap of the day. I do feel bad about not being able to up around, but as long as they know you love them, I have faith that it will be ok. I do a lot from my bed, Homework, watch movies, read, play on the laptop with my 6 yo.
My husband gets frustrated with me all the time. He is the type that is always on the go, always doing something and while I miss that, I just cant keep up with him. Oh and we did divorce, but we are now living together again. I have him read info about connective tissue disorders so he can understand that I am truly in pain. When I looked up Fibro, he said this sounds like what you have more than Lupus or MCTD. He finally begins to see that this is real.
I'm glad I found some place where I can talk about it and ppl really understand what I mean. It is so hard trying to be a mom, wife, professional, friend, sister, daughter, when I dont feel like myself.