Life With Multiple Sclerosis Feels Like 'It's Always Something'

Life with MS feels like 'it's always something.' And for me it is. My MS butts in to my everyday life. While my disease is not life-threatening, it is life-encompassing.

When I got out of the hospital, we made quite a few changes. We had an overhead lift system installed for transfers with a sling because I could no longer bear weight on my legs. Now, when I want to get into bed, I have to have a sling positioned under me and get hooked up to the overhead lift. It swings me into bed which is, granted, a lot easier on me and my husband but is a constant reminder of my progression. We also had a roll in shower installed in our master bath. This is also easier than the old way of pivot transfers to a bath bench. But, as a 39-year-old woman, it still feels like a giant arrow pointing at me saying ‘I am disabled.’

Oddly, I never seem to be disabled in my dreams. But then I wake up and remember. The moment before I open my eyes, I find myself assessing how I feel, wondering what my body has in store for me today.

Being comfortable at all can sometimes be difficult. I am often in some degree of pain and have spasms and other symptoms. The thing with pain is that it varies so much from day to day. ‘Pain’ can really include a number of things - the MS hug (a tight, constricting pain in stomach and/or chest area), Lhermitte's sign (an electric shock type sensation up your spine when you tilt your head down), spasticity, paresthesia (numbness and tingling), and dysesthesia (burning, stabbing, or tearing pain).

On the other side, during my very best days I can do more than many other people suffering from chronic conditions, which I am very thankful for. I work full time and therefore feel productive which is very important to me.

MS does have a big impact on my life. I often see phrases like "You are not your illness." True, but staying myself and not getting wrapped up in it is the battle.