10 Things I’ve Learned by Having MS
1) You don’t capitalize the name of the disease (multiple sclerosis).
You only use capital letters when referring to it as ‘MS.’ Which is good because the dang disease doesn’t deserve capitalization!
2) Don’t sweat the small stuff. Ever.
Worrying about things I can’t change or that won’t matter in a month, week, or day is a waste of my limited energy. I only have so much zip per day. If there’s nothing I can do about the outcome, there’s really no point in getting worked up about it and draining my stamina on something I have no control over.
3) Take your medicine. As directed. Every time.
I’ve actually been pretty religious about making sure I take all my medicine. I’ve talked to too many people who were lackadaisical about it and then suffered the repercussions of their poor judgment. Even when taking natural supplements or other things that are touted as ‘the next big cure, I’m too dang chicken to risk going off my meds. I’m actually so diligent that I was quite offended when the pharmacy sent a note to me and cc’d my doctor, saying I wasn’t refilling my prescriptions in a timely manner, so therefore, I must not be taking my medications as directed. They were just upset that I wasn’t filling my $5,000 a month prescription the second I was eligible to. I explained that to my neurologist and he just chuckled and said several of his patients had gotten the same letter. I have a hard time believing times are that tough for Cigna Pharmacy that they had to resort to those tactics.
4) Never waste a ‘good’ day.
I never know what tomorrow is going to bring so on the days that I am feeling good, I do my best to seize the beauty and enjoy every second. Even if it’s just appreciating that I can walk to the mailbox and that I get to be outside while the sun is shining. Or that I feel good enough to make dinner and am able to enjoy it with my family. Tomorrow I might not be able to get out of bed.
5) Don’t overdo it on a ‘good’ day.
I struggle with this one. On my good days, I try to make up for everything that I’ve been neglecting on my MS days. Which starts a vicious cycle of taxing myself so much that I’m down for the count the next day (or two, or three, or…) Everything in moderation. No, I’m not going to get through two week’s worth of mail that’s piled up on the kitchen table in one day and still clean the house, go to the grocery store, walk the dogs, and anything else I’ve been feeling guilty about. My whole house has been dirty for a week; leaving the bathrooms and dusting for another day will not hurt anything or anyone. I can send my husband or kids with a list to the grocery store.
6) Speaking of overdoing it… Respect your limits.
Listen to your body. When it says, “not today,” it really does mean NOT TODAY! Learn to tell people, “no” without guilt or embarrassment or the need to explain yourself. You can learn this one the hard way or the easy way. I recommend the easy way.
7) Ask for help.
On the days when there are things that can’t wait, reach out for assistance. You know those friends who say, “call me if you need anything”? Well, CALL THEM! What’s the worst that will happen? You’ll find out who really meant it and will get the help you need, and the friends who didn’t really mean it will now learn to never tell you that again, because you will take them up on it.
8) Not everything is an MS flare or symptom.
This was most difficult for me when I was newly diagnosed. I became so cognizant of how I was feeling and anything out of the ordinary worried the snot out of me. Leg cramp? Must be a new symptom; I’m going to have a flare! Headache? It’s a new lesion, I’m going to have a flare! Hang nail? Okay, I wasn’t that bad, but I think my paranoia was hardest on my poor husband who got the panicked phone calls about once a week. The man has the patience of Job.
9) Accept what you can no longer do. Find new things you can do.
I’ll be straight up and honest – this one sucks and usually sends me into deep depression. I was a brilliant woman (okay, maybe not “brilliant,” but I was pretty dang smart) and a good athlete with a memory like an elephant. I loved challenges and relished hard work. I could analyze a problem and usually come up with the best, most efficient solution. Being put on the spot didn’t phase me for a second. Math was never a problem.
That isn’t even close to who I am today. Short term memory? What’s that? I can’t even remember if I washed my hair this morning or if I fed the dogs. My darling husband tries very hard not to get frustrated when he explains the same thing to me five times or reminds me that he told me three times that he wasn’t going to be home on time when I send him a text inquiring where he’s at when he’s late. Anything that challenges my brain exhausts me and it’s all I can do to keep from crying when presented with a problem because I no longer have the capacity to even know where to begin to solve it, let alone the where-with-all to actually solve it. Now, when I’m put on the spot, I get dizzy, my vision gets blurry, my mind goes blank and I sit there like a fool.
Athleticism…. well, I still have abilities, for the most part, but my spasticity is a bitch and when I do actually do something like exercise, I get overheated and have a hard time cooling down. I get drop foot (where it feels like you have pins and needles in your feet). But I can do yoga.
And I’m freaking tired. Man, am I tired. Unless you have this disease, you can’t understand what MS fatigue is like. I’m not discounting others’ fatigue, but when people say things like, “I get tired too,” it is so apparent that they just don’t get it. I’m talking, I literally – literally – cannot move another muscle. House is on fire? Save-yourselves-and-get-my-dogs-out;-I’d-like-tulips-at-my-funeral-thanks– kind of exhaustion.
‘Accepting it’ is a work in progress for me. I’m finding new things I’m good at and reacquainting myself with things that I used to love but didn’t have time for. Writing is at the top of my list. I try to view MS as a blessing; if I were still teaching or working in the business field, I would definitely not have time to write. I love writing. It has helped take the sting out of things that I no longer can even consider an option. When I was teaching, I thought about becoming a pharmacy rep or opening my own restaurant. My possibilities were endless. “The only limitations were the ones I put on myself” kinda-thing. Now, the limitations are real and no amount of “bucking up” or other corny saying is going to change that. Coming to terms with that can be difficult but like I said, finding other things I’m good at has saved my life. (That, and taking my medicine!)
10) Do yoga.
Trust me on this.