Living with chronic illness

It’s not fun. That’s the first thing to say about it.

I was diagnosed with MS back in 1976. I thought I was having a stroke at first, although I didn’t really panic because I decided I was too young to be dealing with that. I’d been getting over the flu–and within the space of a few minutes, my whole right side went numb / paralyzed, and my speech became thoroughly garbled.

In some ways I’d like to have been a fly on the wall, watching us, because we decided we needed to go to the emergency room–but I didn’t want to go without getting dressed! And trying to get dressed (with my husband’s help) without being able to use my right side at all was an interesting process…

All my tests came back normal–and normality also began to return to my body. So I came home with a diagnosis from my family doctor (who had known me since a baby) of stress. In a way he was right–there were a lot of things going on in my life at that time and in the absence of anything provable, it was as good a diagnosis as any.

But a couple of months later, I had another flare-up–at church! I walked in to the service in good shape, but by the time we reached the opening hymn, I couldn’t stand. Everything else was fine!  This time I saw a neurologist–who eventually diagnosed MS.

And so the roller coaster began.

I’ve been fortunate in that my form of MS has been relapsing-remitting…in other words, sometimes I’ve had flare-ups but they’ve gone away and I’ve been able to live fairly normally most of the time. For whatever reason, the last several years, my MS seems to be mostly in remission, and so sometimes it’s easier to forget about it.

But my definition of normal, though, doesn’t quite fit many others’ definitions.

  • I have to take a nap every day. It sounds great–and I’d probably love it more if it were by choice rather than necessity. But knowing that I have to do it makes it less appealing.
  • I can generally plan on taking part in events, but I still know that I may have to cancel without notice if my body decides to act up.
  • While I’m not on any special diet, I do need to watch my choice of foods. Some things really create havoc for me!
  • I have to get a flu shot every year…and I don’t particularly like needles!
  • If I do get sick, I need to watch my fever. Even though it would be better at times to let my body shake off whatever “bug” I’m dealing with by letting my fever take its course, that’s not always a good choice–because running a fever can cause the MS to act up again.
  • Extremes of temperature can be problematic. Obviously it’s easier to deal with cold–because I can always add more layers but can only take so many layers off in the heat. But heat can be a real disaster for me, especially since I do not perspire much.

But life is good.

And because I seem to have been blessed in the last few years–with more energy and functionality than I had when I was first diagnosed–I’ve decided to do something this year that I’ve never done before. The MS Society sponsors a fundraising walk every year, and our family has decided to create a team to take part. Part of the rationale for doing that is that there is a walk in our area–and it’s described as an “easy” walk (sure hope so!!). But part of it is to help raise awareness of the disease–and to do what I can to help raise funds to find ways of dealing with it.

So…I’m also inviting you to support our team, if you feel so inclined. More information on the walk and our team can be found here. If you feel like supporting us financially, that would be great. Otherwise, please understand that for those of us who live with chronic illnesses of whatever type–and our families–simply being present is sometimes the best gift you can offer.