They say the first two years are the hardest. Makes sense. Learning about the disease itself, then how it affects you specifically, getting to know all your doctors, tests, tests, and more tests, more doctor appointments, meds, treatments, frustration. All the things that come into play in a new situation. Sounds fairly negative, and for some of us, it is. Every pain, every twitch, you wonder; is this MS, or something else? You can’t ignore the little things anymore.
It’s odd, the initial relief that you don’t have a brain tumor or cancer doesn’t sustain you long. As frightening as it would be to hear the doc say you had cancer—you’d be scared, they’d lay out your treatment plan, you’d go through it and come out the other side—a survivor. You quickly realize that MS is f-o-r-e-v-e-r. You cannot ignore it, deny it, or wish it away. They can’t give you high doses of some horrid medication for eight weeks and kill it. They can’t do surgery to remove it.
Aside from trying to juggle the many doctor appointments and learning the lexicon, getting to know how the disease operates in you is the most difficult and can take years to master. The symptoms run the gamut, can be nearly impossible to describe, can be attributed to other conditions, come and go at will, affect you to varying degrees on different days. You are affected by the weather, your moods and hormones. You don’t have to take a daily injection to survive day to day, but after three flares in the first year, if the doc says this drug is supposed to decrease the number of attacks, you’re all for it. Even if the shots hurt, and cause large, red, itchy welts, and bruises.
At first it feels like the internet is a godsend. It is THE ORACLE as a friend of mine calls it. It knows all. But its knowledge is finite. After about six or eight months you discover that you cannot find any new information on the Web about MS that you haven’t already read, unless you get onto the professional medical sites. Of course, it doesn’t really count as information if you can’t understand what you’re reading. You find message boards online. Enthusiastic and eager you join, and post and read. First one site, then another. After a few weeks you grow weary of seeing the same thing over and over. Newly diagnosed saying hi, my first MRI, first IV treatment, is it Optic Neuritis or just a sinus infection, is it MS, in limbo, should I call dr. No matter which board it’s about the same. Everyone seems to be comparing notes and looking for answers that just aren’t there.
You pour over the bookstore; MS for Dummies, Your Brain and How it Works, The Idiot’s Guide to the Central Nervous System. You study the anatomy of the CNS, learn about nerves and neurons, and axons. You discover what neuropathy, dysphagia, and other abnormal sensations are common to MSers.
People tell you that you have MS, it doesn’t have you. Others say you are not defined by MS; it doesn’t make you who you are, or change who you were. I especially like to hear people tell me to let it go, and don’t think about it so much. How do you ignore something that affects you every day. And not the same way everyday, either. MS likes to change things up. Most days, its my legs that bother me. My legs burn; sometimes like I just jogged up a flight of stairs, and others, like I just finished running a marathon, complete with being out of breath. Then there are days where my arms burn and grow exceedingly tired just brushing my teeth. Sometimes my balance is off, or I drop things. I get sharp pains behind my eyes, and electric shocks running from my wrists to my elbows. My throat and tongue get tired and it’s difficult to swallow or talk.
Of course, these are all little things. I can walk without aid (so far), though I use a cane at times. I can still see. But it is damn near impossible not to notice my MS on a daily basis, and pretty hard to “get used to it” when the symptoms change day to day, even hour to hour.
Then there are the flares, or relapses. Try to pretend you don’t have a disabling disease then. That’s when the neurologist orders a round of intravenous steroids, followed by a period of oral prednisone. You have to get the IV treatment at home and make the arrangements for a nurse to administer the stuff, have the medicine delivered to your home, along with the IV pole and accoutrements.
If you’re really lucky, like me, and have a wide variety of relatively mild but inconveniencing symptoms, your doctor may order a 6 month steroid push. This is where you get to call the home health nurse every month to make sure she remembers to come see you. You call the national pharmacy and tell them again where to deliver your medicine. And no, they can’t leave it outside the gate, it’s August in California and 100 degrees. Please, deliver just the medicine, I already have the rest of the supplies you need, two IV poles are plenty. Then when they don’t deliver the medication you get to make the arrangements all over again. Then do it again next month.
Of course, it all eventually comes together. You learn who to call, when to see the doctor. My annual MRIs look good. No new lesions. I finished my last round of the steroids three years ago. I have heavy, tired legs on and off but mostly off, pain behind my eyes sometimes, my hands hurt, my fingers and toes tingle, my nose buzzes. I have been having a recurrence of the ever-popular MS Hug that feels like some sadist has wrapped my upper body with rubber bands, and then sat on me. My neurologist says, “As long as the symptoms come and go, you’re doing all right.”
I am one of the lucky ones. The steroids don’t really bother me. Many people become hyper and can’t sit still, can’t sleep, become ill, or have some other ugly side effect, usually in the form of weight gain. How great is that? Your legs feel like you’re dragging around tree limbs, so you get steroids so you can move more easily. Then when you feel better, you really have to move to drop the extra 15 pounds you put on during treatment, but fatigue keeps you from being very successful.
Everyday I know how lucky I am. This disease will be with me the rest of my life, but the treatments and medications they have today ease symptoms and slow down the progression. I’m too busy to spend a lot of time feeling sorry for myself, but on those bad days where I whine “why me”? my husband will ask, “If someone in the family had to get the disease, would you wish it were one of us?” No. “Would I wish this on anyone?” No. Will things get tougher? Undoubtedly. It is what it is.
I am nearly five years since my diagnosis. The first couple of years were rough, but since then things have been good, relapse wise. My pain is usually short-lived or transient, though sometimes even transient pain will make me wince. I guess what I’m saying is, you’d never know to look at me that I had to retire due to this preposterous disease. (I wanted something strong here, but that’s all my brain could come up with.)