I never thought at the age of 47 this would be my life yet I remember being scared when I was diagnosed of being in a wheelchair. I knew what multiple sclerosis could bring about and I feared that when I hit the 10 year mark everything would go downhill rapidly. That wasn’t the case because there were medication developed that helped to slow down the MS progression and more and more have been developed.
My life took on a drastic shift in between switching from Gilyenia to Tysabri which took a lot longer than expected. I unfortunately was off medication for too long and had another relapse that I never recovered from. This was the relapse that disabled me.
I’ve been unemployed for 3 years now almost to the date. I have an aid 5 days a week for 8 hours a day. I go to physical and occupational therapy each week. Walking is getting more and more difficult. I’m in the process of trying to purchase a handicap van because I need to be in a wheelchair to do most things out of my home. https://www.gofundme.com/6c89ruo?pc=ot_co_dashboard_a&rcid=621c0a79855e48f680d2d5065912667c. I am home most of the time because I get tired. I do my little morning activities like therapy and I’m usually done for the day. However I do exercise on days I don’t have therapy by swimming or doing Zumba in a chair. I went back to a vegan way of eating and my aid helps me cook and prepare foods that I just heat up for dinner when she leaves. I am usually asleep before 10pm each night.
It sounds slightly pathetic but you know what, I am pretty happy. I love my condo and where I live. I love my dogs and they keep me company. I love my daughter and even though she’s away at school now, I speak to her everyday. I love my family. My aid is really wonderful and I’m spoiled that she’s so good. My life is good. I’m happy. Sure it might be different without having MS but I don’t think I’d be where I am now and I can’t say I’d be a happier person. I could only say physically I might be better. I don’t get angry at the hand I was dealt. I don’t look at my disease as a curse. I just live my life as best as I can each day grateful for all the things I DO have and in my eyes that’s a whole lot.