Hi Cz,

It sounds like your husband may have a hard time accepting the diagnosis of your RSD and how it’s affecting your life. It sounds like he’s concerned for you and, probably quite scared too. I don’t know if that’s your situation but men often don’t know how to express those emotions.

I think we often forget just how difficult it can be for our spouses to have to watch us go through what we do, it makes them feel helpless. I'm very fortunate that my hubby supports me as he does and that he encourages me to maintain as normal a life as possible, he also is very understanding and encourages me to rest when it’s clear I’m doing too much.. I think that's healthy for me. After speaking with Dr. Rohr in Germany for 2 hours he has a very deep understanding of what exactly RSD means for me, for him and for our future. There are times when we are walking hand in hand and my pain starts to slow me down, I know he feels my pain and it hurts him too, just in a different way. We do need to talk about it from time to time. I was afraid to tell him I decided to get the cane but when I did he just told me that he hoped I would feel better soon and that it would help relieve the pain.

Since he’s been gone I find it is very hard to do many of the things around the house that he would just do without me even having to ask him. I married a man who happens to have an A type personality, he is focused driven and very active. I miss him very very much.

Any pressure to live as normal as possible really comes from me trying to keep up with him and the fear that if I don’t he will leave me. That fear by the way is totally unfounded and merely a deep rooted insecurity of mine left over from a very dysfunctional family and childhood. I came out of that as a people pleaser; which was very evident during a recent visit of a very close friend who brought her 90 year old mother and husband. The visit was very challenging for me and my pain shot through the roof. There were some very difficult family dynamics between them and they were putting me right square in the middle. It was stressful needless to say. At the end of the visit we were chatting about just how difficult it was for me to entertain now. And my friend said you don’t have to do all that stuff just for us! I replied by stating it’s the way I am, if someone comes to my house I feel obliged to make them feel comfortable, feed them, make everything perfect. I’m the same way with my husband, so in a way I have a bit of a break right now. I can't imagine what it must be like for those of you that have children to care for.

Is my pain any better now that he is away than when he is here? No not really, it still boils down to daily management of my activities and stress. I can be my own worse enemy.

The bottom line is that I put this stress on myself and I pretend things are normal with everyone I meet. Until now I’ve had an invisible disability!

If my friends who know what I’ve been through ask me about my foot & or health, I always underplay the realities of what it’s like to live with this. I always show the bright side because I don’t want people to worry or feel bad.

The grass isn’t greener on the other side; the RSD pain still has a mind of its own. It’s just up to me how I manifest my emotions around all that.

I hope you can talk to your husband about how his coming home affects your pain levels so you can take the pressure of yourself. I’m not so good at this but I am getting better. I’m learning how to say NO and not feel quilty about it. When I can do that it feels great.


I hope your doing well tonight.

MsL