About life's small pleasures robbed by MS

Hi Reddy it is Sundy morning here, and yes MS is the ultimate theif.  Nothing we can do about it and for that it really sucks.  I try not to put to much thought into it, or it really gets my goat but here goes.  Yes I have to wear Poise pads, but thank God for Detrol LA and that has helped a lot, I use them as a back up, unless I get upset, I can pretty much control my bladder, now the walking thingie really sucks the big one.  Morning time, I can get by with using just the canes, and I will be all right, but in the afternoon, oh boy it is the wheelchair all the way, and with the foot drop in my left leg keeping a shoe on is impossible.  The fatique regardless of the Provigil is the worst.  I feel that is my biggest problem.  If I did not have the fatique, I could weather the storm.  Now my eyesight goes and comes.  Last year at this time no problem, no pro9bably next year at this time my eyesight will go back to almost normal, so figure.  I hate that I can no longer be the "black girl tanning", because I love to tan in the summer, go figure, I am just wierd like that!  The only good this aboout MS for me, is I do not eat junk food like I use to, now I do not know if that is MS or age.  My drug junk food of choice was potatoe chips and dip and to wash it down with a 2 liter Pepsi, no more.  Now I do not touch the stuff, quit cold turkey!  I went from 213 pounds to 146 boy do I now look SUPER GOOD!  I am going to stop now.  I can no longer strut like a proud turkey in my heels, or I will break my ankles, but it is all good, because I still look good, and for that I am grateful, oh yea, I still carry a mean handbag!  sherry/smomdukes

Hi Reddy, It's still a little hard to write but here goes. My small pleasure included plans for the future, ideas for what I would be doing tomorrow, next week, next year, ect. MS has replaced that sweet fantasy with a new reality. I think that living IN tomorrow is an illusion that all humans indulge in no matter their circumstances. We also tend to live in the past, which drags at our hearts for what USED to be. As an Artist, it's hard, but not impossible, to paint. I USED to paint 8 to 16 hrs a day, and have many unfinished images waiting in my mind to be real. As a Singer, active in recording and public appearances, I now have to wait and see how I feel before I can sing with our group STATE OF GRACE. I used to "stand up" with them. Now I must sit to sing. I also planned to be there and be"myself" for my kids and grandkids, teaching them art and music and how to "just have fun with life." I can't even think about my plans with my husband. We went from walking together to him pushing me in a wheelchair. Now the good part. I am learning to live for the NOW, not easy in our society. I am learning to live the way Jesus said to live, "Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of it's own." In the same place, Jesus says,"Who of you, by worrying can add a single hour to his life." Ask God to help you live in the NOW and enjoy what is there NOW. It sounds trite, but I'm learning to REALLY "count my blessings." How many things can you find about your life that's GOOD. This helps me even though I often slip up, especially when I'm MS sick, but I try catch myself, to go back to finding the GOOD stuff and live in the NOW. It's a wonderful help just to know that we are here for each other, even just to talk, a GOOD thing all by itself. God bless, Katkan

I miss being able to shake hands with a friend while holding a coffee cup. I miss being able to order soup in a restaurant or eating at a buffet (can't always hold the tray still).

I miss being able to go to the store to pick up even one single item without having to write it down on a piece of a paper.

KJ

I have been living with MS since my 20th birthday. In some ways I am lucky for that. My entire adult life has been shaped by having this unpredictable disease. While I have felt left-out of a lot, and long for many of the things that all of you mention here, I'm fortunate in having an insanely positive attitude. I think I was just born with it. Not to say that I haven't let my limitations get me down- they do. I cry and lament like the rest. But somehow the silver-lining always finds me.

I wish I could play with my daughter in the back yard, but I do enjoy the things I can do with her.. and I think she does too. She also sees a mommy who endures in spite of the challenges and I hope that is a message she can take with her.  I can't play tag or hopscotch, I can't walk quickly or without my stick, I can't be too far from a bathroom or forget to take my numerous pills, I can't move without feeling dizzy, but I can give and receive love from my family and dear friends. I can write, and read and enjoy many of the things life has to offer.

I'm not trying to say that everyone should see the bright side. I understand that it's not that easy for some. And goodness knows that we all have a lot to feel sad and angry about. For me it's just easier if I concentrate on the I can list and not the I can'ts. I guess that is my coping mechanism.

If you care to read more along these lines.. I write an MS blog and I love to share. I hope I haven't offended anyone, I certainly recognize there is a time to be angry and at a loss. I guess we all do the best we can with what we've got.

Amy