I do not have a support system. Do you?

I hope you all can help me. My husband is a good faithful man. Works hard for his family. Since I am unable to work now. But he doesn't understand that I can actually feel bad every day and it can be something totally different each day. He ask how I feel. And I tell me him. Then he is frustrated if supper isn't cooked. And other things around house. What do I do? I have told him. My dr tried to get him to understand. And he says he does. But he doesn't. I feel like I would be better off alone. But I can't work. So I feel stuck.

Hi Babyblue79,

Have your husband imagine waking up with a bad flu every morning. That is what I would compare it with.

When I first got fibromyalgia, I wrote to the arthritis foundation and they send me a pamphlet on fibromyalgia and it was very informative. I wonder if you could find something like that in addition to the information on the thread fibro 101. The pamphlet described it well and then there were diagrams.

As long as you know you are doing the best that you can, try not to let your husband's frumpiness get to you. Just tell him you are doing all that you are able to. Try not to let it get you down. Though I know that is difficult. Don't think about being alone as compared to your husband. Loneliness isn't any fun. And when you are use to having somebody around, being alone will make you lonely.

There is commercial on tv that says "a body in motion, stays in motion" and that is so true. I haven't been able to walk this year because of all the snow and the cold here. It is very difficult for me right now. I know when I am walking I feel so much better. So do try to keep moving. I liked Sherrine's suggestion of doing extra on the days that you feel better. But do try to pace yourself. I often try to do too much when I feel good. And sometimes that isn't very often...

I hope that you feel better soon. There is some good information on "fibro 101", do check it out.

Hugs, Karen...

Thank you for your comments!!

Hi to you all,

While I don't have a partner I understand so much of what you are saying and how much this condition isolates us from others that are incapable of understanding (and we can't blame them really can we as the FM can be such an insidious thing when it wants to be). I also find life is easier if I say I'm fine but I don't always do that. Sometimes I just want to sook and have someone show they care. While the FM has been with me for approx 17 years (with some reasonably good years along the way) it wasn't properly diagnosed until 2 1/2 years ago and a lot of the 17 years I struggled with the same thoughts about myself that others have had towards me. Hopeless being one that comes to mind. My two boys are now young men and are amazing but it has also taken them a long time to understand.

It is only in the last eight months that I have accessed the good information that shows the physiological underpinnings and I now feel I have something more concrete to deal with rather than living in the stress/distress somatic illness paradigm, despite there being still so much that is not understood of the condition. I have now become more focussed on (all but slowly... everything seems to happen slowly) trying out things that will help rather than being overwhelmed by all the things I can't do and that are unfinished. I don't know if others are the same but I had so much fear about trying things because so many times when I did I became worse.

As well as the warmer weather, which I always feel so much better in, some other things really seem to be helping me at the moment and I just wanted to share them as they may help someone else. I now make myself a vegetable juice each day (beetroot, carrot, and celery and sometimes cucumber) and I'm finding along with reducing the sugar and wheat in my diet I am far less fatigued than I was. Yes, the cleanup from making the juice is such a drag but I do it while I slowly sip my juice and it's getting easier.

My son also introduced me to Skins, the compression sports attire and I have found them to be amazing. Unfortunately they are not cheap but once I had my size I ordered them online and saved quite a bit. For me the FM gives me the most trouble in the legs and hips so I wear the Skins tights whenever I exercise (which was for me only walking and intermittently at that) and I wear the recovery ones to bed. I have been able to walk so much more and not be stiff and sore for days after. I actually walked for about 30-45 minutes for four days straight a couple of weeks ago before I started to think I needed to ease off and take a break as I was going to trigger a "flare up". I also just wear them on days when I am not travelling too great, and I find I can be active and not go downhill, in fact I come out feeling better. The idea of building up some level of fitness again is becoming less of a dream for me now.

I also find stretching, swimming (when I can which is not much) really help, and the Alexander Technique to be amazingly helpful.

I know everyone's struggles are different but a combination of those things have led me to feeling so much better (in a matter of weeks) and have given me a positive outlook that I had found really hard to connect with previously. I haven't yet made a friend of the FM but I now feel that I just might be able to manage it long term and have a pretty good life again. I am also coming to accept that I am slower than most and my day starts later as that's what I have to do to cope better. If I take the time to do the things that help me get moving better I go the distance better.

Wishing you all peace and happiness and a path through the FM and I am hoping I have found mine.

Kind regards

Kym

No
Basically no support system

Hang in there

Post Edited (DianeB) : 3/9/2014 8:40:26 PM (GMT-6)