Mobility?

Early on in our married life, we ran into a road bump. Well, actually, it was more like a mountain in the way…. I was diagnosed with multiple sclerosis (MS), and for the first five years that we dealt with it, it was major! I spent a number of 10-day stays in the hospital, receiving IVs of ACTH to try to stop the flare-ups.

But then it (mostly) disappeared. It left behind its calling card–some residual weakness in my legs that periodically flared up if I got too tired, too stressed, too hot (which meant that I have to be really careful when I get a fever). But that didn’t happen all that often…and when it did, it didn’t last all that long.

During that time, I said to myself that if I ever had to deal with the MS “stuff” again, I would simply thank God for the good run I’ve had–and deal with grace with what happens. That’s much easier to say when it’s not actually happening!

Over the last couple of weeks, I’ve been having significant mobility issues. They started out rather gently; in other words, my body was warning me that there were going to be some problems (warning signs that I’ve learned to heed).

So I started wearing my brace shoe…to keep my foot from dragging. It’s still dragging.

I started using my cane for support. I’ve now graduated to using my cane and/or walker around home…and my Amigo (electric cart) at work.

I find I’m still doing the “dipsy-doo” as my leg tends to buckle and my foot tends to drag. My legs (both of them to some extent, but especially my left leg) feel heavy when I walk.

So…

Right now my mobility is dependent on my various devices. Is it going to clear up? I hope so–but I’ve not had issues like this for quite a while without having had a fever. So who knows?

I guess right now the bigger question is whether I’m going to actually live up to what I’ve said for so many years…to thank God for the good run of mobility I’ve had–and deal with grace with what is.

Who am I?

Last week our family attended a church family camp. The theme for one of the days had to do with identity and message…and one of the questions we were asked to think about was “Who am I?”

So…who am I?

  • wife
  • mother
  • grandmother
  • aunt
  • daughter
  • friend
  • musician (organist, pianist, composer)
  • poet
  • minister
  • neighbor
  • sometime actress
  • student
  • teacher
  • MS patient

In each of those categories, what message do I send?

I’ve realized that sometimes the message is one of impatience and frustration–and that’s not what I want. I would rather that the message associated with each of those identities be similar–a message of patience, caring, joy…

That impatience arises when I say “yes” to too many requests. It is hard to turn people down, and yet I know that at least some of my identities suffer if I am too tightly scheduled.

As I look back at my list of identities, I realize that I have left out the most important one. Who am I? A child of God!

The message I want to share is a testimony of what God has done in my life–and what God can do in others’ lives. It doesn’t matter which identity it flows out of–I want it to be the same message.

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.

Unbalanced…

My balance has been off the last few days. No, not my mental balance–my physical balance.

That’s one of the challenges of living with a chronic illness–in my case, MS (multiple sclerosis). While it seems to be largely in remission, if I get too tired / hot / stressed, then the weakness in my legs becomes more pronounced–and I have been tired and stressed the last couple of weeks!

It hadn’t been too bad until we were at my mother’s last night–and then as I was walking down the hall to put a game away, I found myself periodically running into the wall on my right side…and just feeling a little weirdly unbalanced.

I’ve had to resort to using my Amigo and my cane the last couple of weeks. At major events (like I was dealing with last week), I usually use the Amigo anyway to save energy. But I’ve needed it–and my cane–more since then…to save energy, yes, but also to feel more confident and steady.

This will pass–again. It’s just been quite a while since I’ve had to deal with this aspect of living with a chronic illness to this extent. Oh well, I’m still mobile…still working…still able to enjoy life–so I can deal with this as well.

Being a Good Steward…

This has been one of those weeks from hell…you know, the kind where you have meetings every day from morning to night, no time to get anything else done, no time to eat… Then this weekend was the annual Peace Colloquy that my denomination holds–and I was also heavily involved in that.

For me, while I enjoy the fellowship that takes place during those weeks, they do wreak havoc on my body. I have to have a nap every day for health reasons (I was diagnosed with multiple sclerosis in 1976)–and quite often the only time available is while everyone else is eating lunch. So I decide that I need the sleep more than I need the food–because I can always catch something later (but often don’t).

And when I’m involved in playing the piano or organ (or otherwise involved in upfront ministry), I also go lighter on my fluids…

So by the time those weeks are over, I’m hungry–but I’m also not. And what sounds good initially to break the self-imposed fast is not always the best choice.

You’d think I’d learn after all these years! But I did it again today…ate lunch at a local Chinese buffet. The food was delicious–I took my favorites…General Tso’s chicken, sesame chicken, orange chicken, cashew chicken, crab rangoon… Most of the way through, I decided that my eyes had been bigger than my stomach (which has shrunk during the week–again). But also, my stomach was letting me know that my choices had not necessarily been the wisest.

Got home–ready to take my nap. But my choices began to haunt me. When I’ve been under stress, that also factors in–especially when I begin to let down after the event has finished. And that was all true again this afternoon.

Good thing I have a lot of reading material in the bathroom!!

It keeps me thinking, though…I believe that I am called to be a good steward–and that includes taking care of my body. In some ways I do that well…but there’s also a long way to go! One of these days–hopefully–the “head knowledge” I have about what it takes to be a good steward will fully become a part of my choices…