Breakthrough : )

I have poured my heart out about my husband on here and his lack of understanding. well Thanks to a lot of you and your advice on articles to help him see more clearly I think he may finally be getting it! We just finished booking our vacation for the year and were discussing with our two young boys all that they want to do while we are there. Now mind you it is nothing extravagant, we simply go to TN every year and stay in a cabin for a week I cant convince the boys to want to go anywhere else, and well I am not complaining about that lol. Anyway the boys start in they want to ride the go-karts, and horses,and monster trucks, and on and on listing all the vacation things that any normal person would strive to do, and most of which we have done every year we have been there. (this past included with my horrible symptoms that my hubby couldn't see.) My wonderful husband looks at me and says "Maybe I shouldn't be, but I am worried about you this time. I don't want you to over do it." : )

Don't get me wrong I don't want him seeing me as glass so to speak but it felt AMAZZZZINNNGG to have him acknowledge that I may need to slow down. My green light so to speak, in the way that I don't have to feel guilty that I can not keep up with him and our two little monkies in all of their manly escapades lol. That's hard enough for a healthy woman my age to keep up with let alone... well I will just say it. I often see myself as broken now. as do much of you at least at one point or another I am sure, so let alone a "compromised" woman my age lol

anyway I had to share... he may not be as closed off as I thought he was. and at least for yesterday, he understood me. and my daily struggle to ensure I have enough of me to do all that needs done. He got it! and told me "It's Okay!" Suddenly I was no longer alone in this house with this life thieving disease : )

Thanks for letting me share.

Really glad that he's understanding more! I do find it's a tricky one though- if I feel like doing more I get nagged by hubby not to do too much, so I don't feel like having a grumble if I don't feel so good another day... But I think learning to pace ourselves, and learning to accept the changes in lifestyle is something good to try!

It is hard with children too when you can't do as much- my hubby has a back injury so has never been able to do the 'physical' boy stuff, and I used to be able to do that but can't so much now. Hopefully your hubby will have some really good times with your boys and weekends and holidays!

That's so great!! When people start to get it (and especially get that while you may be feeling ok now you may not10 minutes from now) it does take a lot of the pressure off. Its great to feel understood. And its also the beginning of the place where you can take care and listen to your body better because its now ok to not do something. Yay for both of you! It may take occasional reminders but you had a break through.

lol funny you should mention this EnjoyLife. because while I started this week out strong and full of life and optimistic, I made the common newby mistake of doing way too much just because I felt like doing it lol. I got kicked down pretty hard and now and reaping the benefits of my decisions. ugh! how long does it take for a stubborn person to finally just stop and think about their choices and decisions. I always think before I do anything anymore and wonder if I can manage doing so or if it will take to much out of me and somehow still I always end up deciding "oh it will be fine, I don't feel so bad" I need a good swift kick in the rear I swear! So anyway the decisions of my Mon and Tues left me Stiff, Sore, and unable to carry meaningful conversations with anyone, along with numb :( after being completely hateful and bitter and angry yesterday lol then giving in to rest and meds I am feeling a little better today but I had to apologize for being so "mean" to the hubby who calmly said "Its not ok, but I am trying to understand, and I know when I don't feel good I get grumpy too, I am guessing it is much like that?" Its sooo hard to balance... How am I suppose to justify laying around like I have the flu when I look fine? I am being told I am entirely too hard on myself and I need to accept the fact that my normal is long gone. but I can make the best of things with my new normal and some days that's easy to do others... well here I sit as an example of how easy it sometimes is for me lol. I wish I had a shock collar of sorts lol to just zap me when I am doing to much lol oh well just needed a good self lecture I guess : )

and Jules this boy stuff is going to be the death of me lol. I use to LOVE the go karts and the fourwheelin lol I was a royal tom boy but anymore after 10 minutes I am so stoved up that I can barely walk it seems, I couldn't imagine doing it with my husband if he was injured : / some days its hard enough with a husband that I perfectly able. and he already has had a lot of fun with them, hes trying and succeeding to get them into hunting lol he says this way I don't have to feel guilty about them doing manly things while I rest at home lol. I just feel like I am letting them all down so often, how did you all adjust to the new pace and changes?

My boys are getting older, so they are able to go out on their own more... but I miss the cycling I used to do with my youngest, and he does miss our rides together too. (I have had neck problems unrelated to SS so that means cycling is definitely out). Talking about understanding- I have only recently realised how bad my hubby has felt over the years- he was really into martial arts and can't do them anymore- and the boys always wanted him to do that with them. I never really appreciated how hard it was for him, to be honest! I can do walking, so do that with my youngest, and he likes to have hot chocolate on a camp fire (not good for the eyes, so have to keep my distance!)- we're lucky that where we live it's only a couple of miles from a forest. Hopefully you'll find things you can do with them- like the board games, and you'll still be part of family fun!

You've both totally stuck a chord for me. I've been dealing with this for a long time and I still don't always regulate well. I have knocked myself down to where I couldn't get off the couch and my mind was still doing a number on me to not just lay there. I had 14 years of constant training in the martial arts so I not only get it, it was the perfect example. Its something that becomes such a part of your identity, keeps your spirit solid and gives you the physical outlet (and freedom). Losing that is very very hard to get over. I've managed to find other things I can do so i make sure to cherish those things. The new norm can keep changing so i think its more about learning to roll with whatever is happening at the time.

Better keep on the right side of you then! Martial arts training isn't something that goes away...!

There is a hobbies and pastimes group on here, Stacey, if you want to try something new:

http://www.sjogrenssyndromesupport.org/group/hobbies-and-pasttimes