MS LifeLines has been one of the most wonderful blessings for me. It is an educational support service for people living with MS and their families. The group is sponsored by EMD Serono who are the manufacturers of the medication I am on, Rebif, and the amount of resources and support they have provided for me have been incredibly invaluable.
Not only do they send the most lovely nurse out to my home monthly to help educate me and check on how I'm doing, but pretty much every month they do a “C.H.A.T,” ( that stands for Connecting, Helping, Aspiring, Teaching about MS), which is an educational program they hold at a very nice restaurant where Mike and I can go to have an amazing lunch, listen to a program that teaches us how to deal with different aspects of MS, participate in a discussion with an MS Lifelines Nurse and get to know other people in the area with MS.
This month the C.H.A.T. was at the Harvest Restaurant in Thanksgiving Point and it was called “Finding your balance with MS – Tips for finding your balance and creating your new normal when living with relapsing MS.” Brandee, the sweet, amazing nurse that visits me each month, was the one presenting. She always does a fantastic job.
The first thing she did was to have us all introduce ourselves with our partners and share when we were diagnosed. So far at all of these chats, I have been the one most recently diagnosed and I can’t tell you what a support and inspiration it has been to hear other people’s stories and hear how they cope and what things they are doing to help themselves. The first one I went to was soooooo hard for me, but I absolutely love going to them now and hope one day I can provide the kind of support I have received from all the beautiful people there for other people who are newly diagnosed.
For the presentation this month Brandee covered four areas: How to manage change, a symptom focus of walking difficulties, the importance of positive thinking and healthy habits.
For the discussion on managing change, she talked about keeping an open mind and being flexible. She asked us to share some of the changes we had made since our diagnosis. I learned very quickly after my diagnosis that making small adjustments as needed is the best way to cope. I have changed my eating habits so that during the week I eat super healthy… lots of chicken, beans, fruit & veggies, yogurt and protein shakes. Then on the weekend I let myself have a couple of treats. I have also incorporated riding the bike for a minimum of 30 minutes a day. I have felt AMAZING since making those changes (and dropped 17 pounds.) I also spend some time reading each day to clear my head. I work 6:30am to around 3pm every day and then come home and lay down for about 30 minutes because if I do that I know I’ll be better for the evening for my family. These are just little examples of changes that you make to cope better.
I have not had many walking difficulties other than some slight balance issues, (like if I look up and over too quickly), and heavy legs on very few occasions. However, I still listened closely in case it is an issue I have later in life. She talked about avoiding high heels and watching out for rugs and clutter in the home as well as letting our doctor know if we start having any new walking difficulties. I actually hold Mike’s hand everywhere we go not only because I love him so much but because it also helps keep me in balance and stops me from tripping over things, ha ha.
I have always been very aware of the importance of positive thinking. I liked that Brandee reminded us that MS is a part of us, but does not DEFINE us. She also talked about trying to find the humor in situations, and this is something Mike and I do a LOT. I always make jokes about it for my family so they can know it’s ok to talk lightly about it. She also talked about depression and making sure we talked to someone… that counselling was an important part of dealing with MS. Overall I think I do a pretty good job with trying to be positive. Every day I literally tell myself I have a choice, roll over and give up, or get up and fight to have a good day. I always choose to get up and do all I can to have a wonderful life and I make that choice for my family.
Lastly, we discussed healthy habits. I feel like Mike and I have really made some positive changes in this area this year and we are feeling so much better for it. It was funny that they specifically mentioned Tai Chi in the presentation because Mike is working on getting certified to teach Tai Chi. He practices every day and he is signed up for a seminar in June where he will receive his certification to teach it to the elderly people he works with in the nursing facilities. However, he has said for the past few months that the main reason he wants to learn it is to do it with me to improve my balance, so it made me giggle when we read that and he looked at me with a “see, I told you” face.
It was such a wonderful couple of hours. I truly love these events and I love that they open them to ANYONE with MS whether they are on Rebif or not and they are completely FREE. You can find more details at https://www.mslifelines.com/
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