On Multiple Sclerosis message boards, we refer to ourselves as PwMS (People with MS), but I think it is more accurate for me to say, “I’m a MwMS,” a Mom with MS. Because I’m a mom first and a person with MS last, with all my other roles (wife, friend, volunteer, daughter…) crammed in the middle. At least that’s what I tell myself. When I’m feeling well.
About a week-and-a-half ago, I woke up wearing invisible wool leg warmers (Weird, right? You’re thinking, “What is she talking about?” I don’t feel like I have the right words to tell what it’s like for me when I have an MS attack, and the best I can do is describe the symptoms, the sensations, and this time, from just above my knees to about halfway along my foot (not my toes) feels warm and prickly/scratchy, like wool leg warmers). My first impulse was to pretend it wasn’t happening. I’ve been dealing with this disease and its… its what? I’m stuck… its CRAP (sorry) for more than 12 years, and my first impulse is always to pretend it isn’t happening. I went about my week, my very full week of Momstuff, volunteering at Pete’s school and piano and swimming lessons and preschool and book fairs and grocery shopping and the busiest, best Saturday ever, pretending that the prickling wasn’t actually incredibly uncomfortable and the weakness that came with it wasn’t why I kept stumbling and the aching must be just the change in the weather. I was not having an exacerbation. It would all go away.
You’d think that I’d know better how to deal with this after this long. I have a great support team. I’ve got my husband, my parents, my in-laws, and friends. All I would have to do is admit to someone that I was having a problem and I’d have all the help I needed, all the encouragement they could provide. But that would require me to ask for help. Nuh-uh. Not me. I don’t need help. I can deal with this myself. And besides, it’ll go away on its own. Right? That’s what my parents always said about my brothers: “If you ignore them, they’ll stop bothering you.” I figured out that they were actually right (it only took 16 years), but the same isn’t true about MS, no matter how badly I want it to be. I ignored it. It got worse. I needed help. Yuck.
I called my doctor on Wednesday and told him I needed steroids. He talked me into IV steroids and promised that we could start the IV treatment the next day. On Thursday, the home nurse company called and said, “We can’t get there before Saturday morning.” That’s not good. I finally admit to myself and everyone that this scary thing is happening, and I get put on hold?!
Here’s where me being a mom gets in the way. Or maybe it’s more accurate to say that here is where my MS gets in the way of me being a mom. Thursdays are a day when my little Lulu is home from preschool. When the nursing agency said, “Sorry, you’ll have to wait,” I cried because that’s how I react to stress. Being not-quite-2 and busy coloring on the piano bench (literally) with her pink crayon, she didn’t notice. It was okay. I emailed my husband, posted a complaint on my blog, pulled myself together and called my doctor. Then I tried, oh I tried so hard, to be regular old, la-la, no-big-deal Mommy and not think about the fact that my stupid doctor had talked me out of taking oral steroids by making a promise that he could not deliver on, and the fact that when his assistant called me back, she was probably going to tell me there was nothing they could do (she did), thus contributing to my stress and making it more difficult to be a mom first and a sick person last.
I admit it: I’m flawed. I’m not perfect. In fact, sometimes I’m so imperfect it’s ridiculous (nuh-huh – you are too). My poor toddler, my tiny ray of sunshine, my sweetie, had to spend the rest of her day with me, her crabby, stressed, super-sensitive, over-reactive wanna-be-mom-type person. Everything she did was wrong. Every word I said to her was “NO!” There was no playing, no singing, no reading. Not by me, anyway (she did, my little trooper). Poor kid. Fortunately for her, her sister and eventually her daddy came home to share in the torment. I just wanted to crawl into the back of my closet and close the door, and since I couldn’t do that, I gnashed my terrible teeth and rolled my terrible eyes and showed my terrible claws (sorry, Mr. Sendak).
It may not be as bad as I’m remembering. Wait a week and then ask my family. No. Never mind. Don’t ask them, especially not in a week, when I’m crashing from the super-high dose of steroids and once again a Monster Mom.
And that’s just it! It’s not the MS that makes my job as a mom hard. I’m fortunate to be mostly well most of the time for the time being, and my symptoms and the fact that I have MS aren’t what turn me into a basket case. It’s the medicine. The stupid medicine. It always has been. And the insurance. My every-other-day injections that cost, what? $1500 a month now and have to come from the “specialty pharmacy.” And a simple IV for 3 days of steroids that insurance might not pay for if I to go to the doctor or hospital on my own time and have it put in.
But my girls don’t get that. They shouldn’t have to get it. Not yet. They don’t know why Mommy is extra grouchy today, just that she is, and it’s not fair. Because I love being a mom. But I hate being a MwMS.