What do you miss most?

I know we all try to look on the bright side, but sometimes it 's good to reminisce, and even to vent! What do you miss most that you used to love to do?

For me, it would be dancing, and riding in the car, whether it's a short ride or a long trip! I miss going to my husband's army reunion each year in Gatlinburg, such a beautiful place and such a nice group of people! I encourage him to go anyway, seeing the guys is very important to him, to all of them!

Hi! I'm professional classical pianist and musician, so, I miss my music and playing. I anyway still play a little but not very much, my repertoire is very limited. Beside this I miss just the ability to walk without braces.

I miss dancing, doing all of my own housework, driving.....I miss my independence basically

I miss riding motorcycles!

I can walk without braces, but have to use a cane for balance.
I also used to be a very rapid typist... now, not so much! LOL

Hi HM,

I'm sure this is a tough one to deal with! I know I have a friend with Fibromyalgia and Arthritis who had to give up ballet, it broke her heart, but she is finding some other loves to help fill that hole in her life! I'm glad you can still play a little!

It's good to hear from you, welcome to the group!

Me too, if I do clean, I suffer for a long time to come!

Motorcycles? I've been on the back of a few of them in my younger, braver days, Gerald! Now I'm perfectly content to watch others ride them! If I had my way, I'd drive a high speed tank!

Dear SK :

What do I miss the most since Muscular Dystrophy took a hold of my legs, and ruined my ability to ever walk again ? I really miss the ability to WALK, I miss the ability to drive a car, I miss the ability to not have to watch my mother struggle to put me into the car whenever we have to go somewhere, ( it breaks my heart ).

This stupid isease is so UNFAIR to me IT has cost me my walking ability, partial sense of my freedom to go places, and it has completely destroyed my relationship with my brother. I am so mad at god, you have no idea how P.O'd. at god I am.

Jayme

Many of us have had to find our "new normal". It is very difficult. Others have to take us where we want or need to go and maybe just maybe we would like to go somewhere by ourselves. I know I want to sometimes. People don't come around as much anymore. We aren't contagious......but some friends and family don't know how to adjust to our new way of life. I pray that each and everyone of us...finds a sense of peace and acceptance so that we can live our lives to the fullest. We can do great things whether we can walk or not.

I used to do all my interior painting and decorating and now it takes me two days just to mop my floors. Back hurts real bad after, but I am going to push.

Dear Jayme,

Good to hear from you, I've missed you! I think of you every time I see a baseball game, and hope you are having a good day! Not being able to walk or drive must be unbelievably tough on many levels! You are fortunate to have such a good mom, but I'm sure it upsets you to see her struggle!

With all of the many people in the world who have disabilities, you would think that there would be a reasonably priced solution to getting in and out of cars by now!

I think you have every right to be POed at God! It has to be one of the toughest things to ever accept, but I think you are doing pretty good with it! It's a process, I think. I'd give you back your legs if I could! I really would!

Yes, I hope that too. Braylins gramma! The new med is encouraging, but a cure would be even better! Imagine how wonderful it would be to reverse this! There would be dancing in the streets that day!

Martha, I know, sweeping, vacuuming, mopping is all so difficult for me too! I had a lady that came every monday, but she got to the point she didn't want to do it either, and complained the whole time! It was a half hearted job at best! That is not exactly the phrase I had it mind, but you get the point, I'm sure! She also did not like my $500.00 Dyson vac and broke it up!

Haven't found a replacement, if work is so hard to come by you would think I could find a lot of people, not the case, and these companies that clean want to dictate what is done, when it's done, how it's done, and I'm not having that! So my mom and I suffer through it.

Surely our standards have been compromised!

I also like to decorate, and have done my share of painting, floor sanding, furniture refinishing...not now! I put an ironing board away the other day, and it about killed me! My granddaughters ask what an ironing board is! ha!

I sympathize with anyone who comes to the point of being mad at God. I've been there, but what He has done for me has been more than I can ever repay. He has pulled me through many serious surgeries , even Cancer so I cant stay angry.



SK said:

I think you have every right to be POed at God! It has to be one of the toughest things to ever accept, but I think you are doing pretty good with it! It's a process, I think. I'd give you back your legs if I could! I really would!

well said Martha! He has done much for me too! I get discouraged and question things, but when I look at the big picture God had been very loving to me.

I miss a life without stigma. The societal mechanic serves a purpose, or at least it did at one point, but it is hard for those who have things to offer and who haven't given up. I love people, and I love to be around them, but sometimes the joy diminishes with all the discrimination toward my condition. There have been fascinating studies done on the subject and, for someone like me, it really takes perspective in order to accept their given behaviors and tendencies, but in the end I understand that I belong to this race just as much as the next guy.

I know what you mean. It's just that enough is not known about our disease like with MS or cerebral palsy. People bluntly come out and ask whats the matter with your legs? I never get bothered by someone who is not perfect. I treat everyone the same.



Honks said:

I miss a life without stigma. The societal mechanic serves a purpose, or at least it did at one point, but it is hard for those who have things to offer and who haven't given up. I love people, and I love to be around them, but sometimes the joy diminishes with all the discrimination toward my condition. There have been fascinating studies done on the subject and, for someone like me, it really takes perspective in order to accept their given behaviors and tendencies, but in the end I understand that I belong to this race just as much as the next guy.

Well said honks, life without stigma! That's a mouthful!