Faith, Multiple Sclerosis, Not Today MS, Uncategorized

How to prepare for MS relapses

My co-workers hear me say this phrase a lot: “If I get hit by a bus . . .” If I get hit by a bus, here are the summer program letters ready to be mailed out the first of May. If I get hit by a bus, all of next year’s tuition binders are all set up and ready to go. If I get hit by a bus, you should be able to find everything you need in these binders. My co-workers don’t like it when I say that :). I don’t think they like the thought of anyone getting hit by a bus, but they also don’t like the thought of having to take over anyone else’s responsibilities suddenly. One co-worker usually responds with, “Just don’t get hit by a bus, okay?!?!”

I’m not trying to be dramatic when I say this and according to Google, “Based on information provided by the Centers for Disease Control, the odds of being struck by a car (or bus) in the United States is about one in 4,292. The odds of dying as the result of being struck by a car are about one in 47,273.” So, while it’s not likely I’ll actually be hit by a bus or car, it is likely that I will have an unexpected absence at some point due to Multiple Sclerosis.

All of us with MS live in times of highs and lows. During a relapse, the world is bleak. I remember laying in bed on a beautiful weekend in late June of 2014 while my husband helped my daughter pack for camp. I could hear them. I wanted so desperately to help, but I could not. I couldn’t even use the restroom without assistance let alone stand or sit up for any length of time. All I could do was sleep and pray. I asked my husband to play worship music on my phone and I prayed for an end to the vertigo, weakness, and fatigue that was plaguing my body. Yesterday, I ran 4 miles in the bright sunshine, came home and did more strength training exercises, then made dinner, washed the dishes, and a variety of other chores all after a full day of work. Most days are high. But I know that it’s likely that I’ll have more low days in my future.

So, how do we prepare for those low days without letting ourselves become depressed or anxious? It’s tough. I like to believe that I’ll never have another exacerbation or new lesion. But I’m also realistic. And more than that, I like to plan and prepare for things. I know that if something were to happen, the last thing I would want to worry about is work. And I love my co-workers and would hate for them to have a difficult time picking up where I left off on a project or daily task.

If you knew you were going to be out on vacation or maternity leave you would make every effort to work ahead and keep your co-workers informed about things you are currently working on. You can think of MS much the same way. Just think that you’re always preparing to be off on vacation and that will seem less depressing :).

I’ve made a list of things I try to stay on top of for my family, co-workers, and friends in the event that stupid MS rears it’s ugly head. These are some good tips for anyone to do, not just those with a chronic illness:

  1. I keep the Medical ID of my iPhone Health App up-to-date. There’s an area to list height, weight, medications, picture, etc. And anyone can access this information in the event of an emergency without your passcode. All of my emergency contacts are on there as well so anyone could easily access their numbers.
  2. I try to stay on top and work ahead on any projects (professional or volunteer) that I’m a part of. I make sure others stay informed of the progress so they hopefully will be able to easily step in and take over if needed.
  3. I keep folders of important school papers for my kids where my husband can easily access them. Thankfully both my kids are pretty self-sufficient and stay on top of their things pretty well.
  4. My husband and I have an emergency savings and are working to increase that so we could be prepared if we have to be off work unexpectedly.
  5. We have a family budget that keeps us on track with payments and keeps our bank account balanced. We regularly meet and discuss future plans and have a savings outline for the next several years for things we’re trying to save towards (graduations, family trips, debt payoffs, etc).
  6. I’m blessed with a job that gives me vacation and sick leave and I can bank sick days from year to year. I’m working hard to save sick days and vacation days so that if I need to be out for several weeks, I won’t have a lapse in pay.
  7. I don’t hold grudges. I don’t like to leave things unsaid or hold back apologies. I try to live each moment as if it were my last. The truth is, none of us knows what the next minute or hour will hold. I can’t control everything. Heck, I feel like most days I can’t control anything. But, I can work hard to not have any regrets. I love my people like crazy. And I want them to know that above everything else if something happens.

Here’s hoping that someday, we’ll find the cure and the prevention for this stupid disease. But, as my momma would say, “if it’s not fleas, it’s flies.” There will always be something. Jesus said, “I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.” (John 16:33). We can hope for the best, be prepared for the worst, but most importantly have PEACE in the knowledge that Jesus has overcome all of the crap that this world throws at us.

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