Hello, my mom is not supportive in the least for my fibro, she is however very supportive in my weight watchers. I did think my dad understood a little but now I think I may be wrong about him too. My great aunt in indiana also has fibro and about two years ago they went and visited her and when they came back they seamed like they were totally change. My mom told me she didn’t know it was that bad but after maybe a month or two it went back to the way it was. She will comment on my house and different little things like that and then last week my dad was poking me in the ribs which is my worst spot and he hasn’t done that since he came back from my aunts. So I guess everything they learned has gone right out the window. My dad has rhumatoid arthritis so I really though even though my mom didn’t seam to understand anymore that my dad did a little, at least until the rib poking.
My mom is very stubborn and stuck in her ways and is very hard to talk to, I hid that I was having trouble from her for a long time. So my idea is to maybe print off some info about it and leave it at her house next time I visit. I would write her a letter but I have no clue how to start it or even how to write it. I also would like to some advice on how to talk to my husband. I think it would be nice if he would take it upon himself to do some research himself but feel awkward bringing it up. Thanks, any advice would be helpful.
Hi Rebecca,
Perhaps you could ask her to join Ben's Friend's to meet and speak with some of us, there are even young men joining to support their girlfriends and learn more about FMS through our conversations, that and taking her with you to the Dr appointment, sometimes Doc is your best friend there!
Hope it works out,
SK
Well unfortunately she doesn’t have the Internet, like I said she’s stuck in her ways and I don’t think she would ever go to the docs with me, she would probably just offer to watch my girls while I went instead, but thanks.
That is still a huge help as opposed to having to take them, so hard on them and on you too! Too bad we are a couple of states away! We just have to hope that Dr Oz or the Doctors, or someone has a show about it, and maybe some knowledge will be gained.
I will keep you in mind, and in my prayers, I know you are hurt by it, and I know that it will also make a better mother of you.
Big hugs to you,
SK
What about something like:
Dear Mom,
As you know I suffer from fibromyalgia. I use the word suffer because that is what it is; suffering. It is not something that I am putting on. It is not something I am making up. It is very much real and although you do not see it I feel it. I feel it all over my body, all the time without a break. I do not know whether you are unaware of just how debilitating this condition is or if you are trying to make light of it because you do not know how to communicate with me about it.
Imagine that every time you move you feel pain, and every time you try to do something that you previously took for granted you find you are too tired to complete it. Imagine feeling alone, frightened and sore and then imagine someone who should be close to you pretending nothing is wrong. I know that physically I may look fine but I am not. Every time you make light of this condition of pretend it is not real an extra pain is added to the pain I am already feeling: the pain of being blanked by someone who is supposed to love and support me. I need your help and support. I need you to stop making light of this condition.
Here is some information about how it effects me, please bare it in mind and consider it before you make comments in the future: [insert information]
These are some of the things that I find hurtful [insert some examples]
I love you and I need you to understand and support me.
From Rebecca
Oh I so understand the parent(s) not understanding. My mom who for years always told me eat right, exercise blah blah blah but when I really started being treated by a chronic pain specialist she seemed to now understand what it was I really was going through. Always seemed supportive in understanding that my house is a disaster because I can’t get up n clean it everyday. Yada yada. But she moved in with me without a car and when she would get mad if she would need to go somewhere and I just couldn’t drive her around. Well she moved out and my cousin who I am close with saw her over mothers day weekend. Tells me that when my mom and my sister were at my sisters place (my cousin wand staying with her) my mom was saying how she didn’t understand how I could volunteer (I volunteer at sporting events to pay for the trips my sons choir and music co (they perform like the kids on glee) take each year) but I couldn’t work. It’s not that I can’t work. I got laid off and am having one helluva time finding a job. Oh and she also gripped about the medication I am on. Telling my cousin that I am needlessly addicted to my medications. Now I would be the first person to raise alarms if I felt like it was getting out of control. I visit my doc once a mo and we talk about my worries. But to have my.mother say and do one thing to my face and another behind my back just about kills me. My father killed himself with alcohol and drugs I just couldn’t do that to my kids. She knows just how against it I am. It just hurts that the people.who are supposed to love you unconditionally look at you like your some drug seeking unemployed mooch when all we want is to be pain free and working a meaningful job!
Dear Rebecca and Punkin,
I am so sad to hear your stories, I don't understand like you do because I have been blessed with a super great Mom who just turned 80 on Wednesday! She has always been there for me, is in wonderful heath, and I love her beyond words. As great as her mother was, she was cold and hard, especially on her, that never really changed, seeing that was a hurt and an anger difficult for me to deal with.
Your Mothers are missing such a wonderful opportunity to really know you and be genuinely loved by you, wish I had a daughter, especially ones like you!
Please know that you can talk to me anytime.
SK
PS Good for you to do that for your Son, so that he can be part of something as happy and rewarding as singing in a group! I know what it must cost you to do this! He will always remember that you did this for him! Really!
SK, thanks! It kills me to work these games cuz we are on our feet for anywhere from 8 to 10 hours and it always takes me 2 to 3 days to recoup from them but like this weekend it soooo pays off for the extra pain I cause myself. See they competed at Disneyland this weekend its called the Heritage festival and the kids who belong to a.double A school brought home 4 gold, 1silver, an adjudicators awards, 3 leadership awards and 1 administrators awards. That’s 10! Awards! I am so proud of them! It costs $1500 per person to go to Disneyland but the only thing that’s not included in that is lunches and gifts or trinkets that we want to buy. I spent 4days running around Disneyland and sat. Was our longest day 9am to 11pm I was smart though I rented a scooter lol and that helped 120%! That’s even years. On the odd years like 2013 we have a 7 day 2 island trip to hawaii where the kids sing at the memorial day celebration that the Govenor of Hawaii personally invites the.kids to come and sing at. That costs $2500 per person. So the fact that we have the opertunity to wwork Seahawk, Sounder, Mariner and other events to save money for these trips is miraculous! Anyways, yes I am one proud momma! Lol
Thanks for being here to chat with
You can check them out here at this link. My son is the tall guy on the Right r in the beginning and the young lady who sings the first girl solo and the solo for let’s get physical is his girlfriend
Http://www.youtube.com/watch?v=uPn_QNu1i1w&feature=youtube_gdata_player
WOW!!
That is a very big honor! I have heard of the Heritage Festival, most of the kids who are lucky enough to be employeed at Disney are involved in this. No matter what your son will choose to do with his future, this will help him pave the way to even greater things!
You were very wise with the scooter, and I hope that you can stay proud and strong to carry him through! Good for you, proud Mama!
Glad to hear such good news!
SK
He is one good looking kid, with a pretty gal! So nice they have the same interest!
They're good, and you will love Hawaii, I have been there once and said if I went again, I was staying!
I was literally just thinking about that the other day. My mom always watches Dr. Phil and I wish someone would do a show on it. They seam to do them about everything else.
Thanks Mike so much, I almost cryed just reading that
Punkin I'm so sorry to hear that about your mom. My mom is more of the "well I did that with 3 kids". I am so glad to hear that you are doing that for your son he will always remember you doing that for you.
And SK thanks again
Mike, I almost cried reading this- you are very gifted in expressing yourself. I am not sure I ever could have pulled my feelings together in such an effective and powerful way. I may ask to borrow this as it perfectly expresses what I’ve been wanting to say to my own family members.
Rebecca, I feel for you as I have similar struggles with my family.
XX,
Sunflower
Yeah my mom has used that term several times also. What’s sad is I am convinced she has fms also. See I remember when I was younger she would wake up with her hands so sore and swollen she could barely move them. And her.legs would hurt so bad. But she has a heart condition and blames every ache and pain on that now.
Rebecca what’s the support like from your significant other or your kids or friends? As much as it hurts and I wish we were closer than we are I have just realized that I need to rely on them more than my mother.
My husbands support is just kinda so so. He doesn’t care that the house is messy and he knows I can’t do everything but I wish he would do some research on his own. I just had a talk with him about a month ago cause he never aknollages when I’m hurting and he said that he didn’t say anything cause there was nothing he could do. I told him just knowing he knows can sometimes help. Also he’s really bad about when he’s home Im still the one who is watching the kids eve when I’m hurting, he doesn’t help much with them. They are only 2 and 3 so they don’t know what’s going on. My father in law gets it really well. His wife was very dependent on him before she passed 3 years ago and he can see me for about a minute and know I’m having a bad day, but he has his own life to live. I do have one friend, she really is my only friend, and we go out once a week and though I’m not sure she fully gets it she at least listens to me and accepts it. Thanks again
Of course you may use it. I have had plenty of experience writing things to my own mother trying to get her to act like a human being. Mikex
Are our husband’s related? Mine is supportive but the thing that gets me most is the house. I know he works all day but even coming home and maybe helping with the dishes would be easier on me. But he will only clean if I am cleaning but the second I need to stop and take a break he stops and all cleaning ceases to exist.I do know he wishes I would cook more. I feel horrible for not being able.to do all the daily things. But hell I can only manage to put my hair in a ponytail because my arms don’t work after about 20 seconds of my arms being up that high.
Ah, the husband chronicles!!! LOL!!! Mine has a 'bunker' in the basement!!!