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Changes In Our Bodies Caused By Multiple Sclerosis Can Bring Depression

I was reading a blog today that was really inspiring to me about a man with Progressive Multiple Sclerosis who is in a wheelchair and his story about remembering the way things were before MS and all the activities he can no longer do. It really tugged at my heart strings and as I completed reading his story it made me think about my own life with this dreaded disease.

It was clear that I don’t spend a lot of time looking back at what was mostly because of the depression that comes from doing that, but it there are those occasions when I do see others doing certain activities that make me wish I too could do that again. Some of things though that does bring me regrets are wishing I had more energy and strength to complete a task or performing fun activities with my family and friends, especially with my four beautiful grandchildren like bowling, putt put golf, or even swimming for an extended period of time. The other is taking a vacation.  The big wish on my bucket list is to take my immediate family on a vacation like to a Theme Park which also entails a day at the water park. Of course this goes without saying but this must happen during the “summer months” when the heat affects my MS the worst. The thought of standing in long lines for rides being hot and tired and symptoms of Multiple Sclerosis screaming at me threatening to ruin the trip honestly scares me to death. I probably could handle the water park without too much agony though.

My daughter had asked me if my husband and I would like to come with them to Walt Disney World so we could enjoy watching the kids’ fun and amazement at such a wonderful place and of course I shouted yes. It was my husband who brought me down to earth reminding me of how hard this would be on me, and of course the sadness set in. The trip is postponed until the youngest is old enough to enjoy and remember the experience but I just keep hoping that by that time a new medication or treatment will have surfaced that will enable me to accomplish this mission. Needless to say, I am saying a lot of prayers for this request to happen.

It is easy for me to sit in the comfort of my home and plan a simple small vacation when I am cool and feeling good, but as the time approaches the anxiety sets in. Thoughts start to arise; will I really be able to pull of this much needed time away without having a flare-up and ruining our trip? Luckily my husband is so supportive and has learned to adjust with my ever changing condition and has actually encouraged me to do what I can, but insist on frequent rest periods to help me maintain even though I am away from the comfort and routine of home. It is still hard not to be disappointed and feel responsible when plans change.

It wasn’t that many years ago when I too was in a wheelchair and was much more limited to what I could and couldn’t do compared to my present state. Thanks to an experimental treatment, Lemtrada/Campath, this wonderful medication reversed my condition and now I am walking without any assisted devices. So when I say that I can truly relate to this man’s story, it is with all honesty. I suppose that while I don’t spend the time looking back is because my story was much more complicated back then as oppose to now.

If there is one thing I do want to stress is having anxiety about your present (today’s) condition is ok, but living in the past is counterproductive because it has already come and gone. Worrying about the future as in a year from now is a waste of time because you don’t know what tomorrow will bring. 10 years ago I was told that I would probably be a complete vegetable within 9 years because of having Progressive MS. Then out of the blue without any warning, here came that wonderful medication that changed my future. With all the research and study medications/treatments that are presently going on, the answer to reversing or even curing our disease could be right around the corner. I pray that is the case for each of us but until then I will continue to live one day at a time. As far as my social isolation due to being worried about how I will do, my goal is to overcome my fear by trying to do more things outside of my comfort zone but remembering to live within my limits. Hopefully this will provide me more opportunity to enjoy more things that I have been scared to do.

MS Blogger and Multiple Sclerosis Activist shares her journey living with MS, tips for others living MS and her husband, Steve, offers his insight as a caregiver for MS.