Yes, I have MS, but ...

I was diagnosed with Multiple Sclerosis in 2006. My friends and family were upset and scared for me, but I just felt relieved. Thank goodness I have a diagnosis! Now I can do what I have to do to control this. Within a few weeks, I realize the only control I had was giving myself a shot every week to slow down the disease. But I thought, I’m not that bad off; I can live with this.

I was also relieved because now all these weird things that had been happening had a reason, a reason other than I was depressed and/or not working out enough. There were literally dead spots in my brain! No wonder my personality changed from the nice girl to the paranoid, angry girl. No wonder I had no energy and my husband, Al, would come home from work to find me in a deep sleep on the couch. No wonder I had excruciating pain in my left cheek that no amount of painkillers would stop. No wonder “Black Water” played on the radio every time I was in the car. OK, maybe that was just dumb luck, but it sure felt like I must have had some transmitter in my head. But, even with all that, I thought, I have this disease, but if this is the worst it’s going to get, then I can live with it.

The nurse practitioner I saw explained MS as an orange, outdoor extension cord. That covering over the wires is like the myelin sheathe around the nerves in my body.  The extension cord’s outside cover can get worn, so the wires get exposed. With MS, inflammation causes the wearing down of that sheathe, resulting in exposure of the nerves (This is why I had to take steroids during an exacerbation—I needed to reduce the inflammation. Steroids are miserable, by the way.) The outside cord still works for a while, but eventually wire connections break, so it stops working. My whole body doesn’t stop working, but those “wires” along a neural path will break, resulting in scars, which are the lesions in my brain and on my spine, so communication from my brain can’t get through and that’s why my foot and left hand always tingle. It’s why the muscles in my left leg contract, feeling like a full-leg shin splint (it’s called spasticity). It’s why I get brain fog if I get over heated or stressed, which is a nice way of saying that I can’t complete my thoughts. It’s also why I have fatigue that forces me to take a nap whether I want to or not and still have pain in my cheek. But still, even with a disease eating away at the insulating myelin sheathe, exposing and breaking neural paths, I have a mild case. It could be so much worse—I’m lucky this is as bad as it might get.

I spent a few years in therapy, learning cognitive techniques to control the paranoia and the downward depression spiral. Yes, sometimes I know it’s happening and I know I’m spiraling, but I just can’t stop it. Those are my lost days. Lost because I don’t have the energy to fight it, so I give myself permission to wallow a little while until I can turn it around. I might miss a party or turn down getting together for a night of knitting with my girlfriends or not want to spend time with my husband and at it’s worse, lie on the couch watching Netflix shows I’ve seen thousands of times. I don’t have a job because I just don’t think I can handle full-time work because of the flair ups of my symptoms and the depression. But, I’m still not as bad as other people. I have a relatively mild case, and I can still live with this.

By 2013, I found the best gym in the whole world. MS Forward is a gym created by a man with MS for people with neurological disorders. I’ve never enjoyed being at a gym until this one. It’s circuit training and group therapy all in one. I get stronger, I lose weight, I have energy. My doctor is impressed, my husband is relieved, and my church benefits because I start volunteering with youth. I go from chaperoning on a mission trip to creating a Jr. High Youth program, to being hired as Director of Children and Youth. I describe myself as the poster child for “Who knew?” because I had never seen myself in this kind of job. I love it, and holy cow, I’m good at it! Sure, the tingles in my leg and hand were a little worse and I develop an MS hug, which is a tightening of the muscles around my ribs, causing a pain in the center and around my chest, but that wasn’t all the time. Maybe they were wrong about my diagnosis because I feel great, most of the time.

My pastors tell me to remember to take care of myself and protect my free time because working in a church can take all your time if you let it. My husband hates this job because I’m always working, and I don’t have time for him. I ignore all this because I feel needed, appreciated, proud, and fulfilled for the first time in a very long time. But maybe “overfilled” is a better word. I stop going to the gym because I have to go to this meeting or get some work done or “fill-in-the-blank” needs me to do something. I start gaining back the weight I had lost, and I start catching everything going around. What did I expect, I worked with walking petri dishes. But I’ll get over it; I’ve been feeling so good, this has to be temporary.

The problem is that infections bring on MS symptoms and make it harder to recover. And with a worn-down body, comes worsening MS symptoms. And with stress and anxiety, comes even more worsening MS symptoms. Then my boss says, “Are you moving slower?” And I’m not recovering to where I was. Then I have to work from home because I don’t have the energy to get to work. Then I have to leave in the middle of a church service because if I don’t get home right now, I won’t be able to drive myself because I’m about to collapse. Then Al goes with me to the neurologist. My doctor says, “I eventually have to have this talk with all my patients—you can’t work full time. This disease will progress.” Unsaid part—“and you’re helping it.” Well, I’ll just get back to the gym, cut back on my hours, and I’ll get back to where I was. “I don’t know if you can get back to where you were. This may be your new normal.”

I tried part-time, but apparently, I’m not a part-time kind of person. I kept doing more, quickly returning to the same tiring hours and the same stress. Things fell through the cracks, and I was embarrassed, frustrated, and felt like I was letting everyone down. Then I started to have another relapse. As I sat on the couch, crying, with my head on Al’s shoulder, he says softly, “You know what you have to do, right? You know it’s time.” And I write my resignation letter. I have MS, and I have to take better care of myself because this disease progresses.

I’m regular at my gym again, but I’m not the same. It takes a year before I can do the balance exercises without having to catch myself before falling. I’m working on regaining my stamina, but I’m starting to wonder if it will ever happen. The dumb bells I use are 6 and 7 pounds, rather than 9 and 10 like they used to be. Sometimes I have to take naps when I get home from the gym. Sometimes I just have to take a nap.  I have MS, and it’s frustrating.

After a year and half, people are glad to see me looking so well. I thank them for their concern and support, and silently for not mentioning my weight gain. I miss my life at the church and feel ready to do some volunteering, so I take a semester to lead the Sr. High Youth. I can’t do it the way I used to, and it’s frustrating. I take them on the mission trip, but by the last day, I’m moving slowly with a stiff left leg and can’t participate in some of their last-day, fun activities. They understand, but I’m embarrassed and frustrated. A week after I get home, I trip in my home and fall, hitting my head on the granite countertop, resulting in 11 stitches over my right eye. I have MS, and I have to accept that I may be able to do some of the things I used to, but not at the level I used to.

I am better, a lot better. I’m doing more at the gym, I had a good check up with my neurologist, and I’m looking into some volunteer work or who knows, maybe even a part-time job. We’ll see. My health has to come first.  I have MS, and it changes the way I live my life. 

Kell

The Irony of Wanting and Not Wanting to be Heard

I’m restless. I’m frustrated. I’m tired of talking to the vast emptiness of Facebook and Twitter in short, easy-to-read sentences and paragraphs that barely go beyond the surface of what I really think. I do like the challenge of Twitter and saying what I think in 140 characters, but it is a bit limiting sometimes.

There is an irony, however, that although I’m frustrated with feeling like I’m fruitlessly talking to a wall, I’m wanting to return to writing on an abandoned blog with no readers. (Then to find out I can’t  get to my old blog, so I had to start this new one.)

Social Networking is an odd thing, turning something we do in person into something we do on a computer. Networking has evolved from connecting wires for machines to communicate to connecting people to other people for career enhancing to connecting everyone through communication machines. You can connect with people from your past, famous people, people who think the way you do, and people who don’t. When I first joined Facebook, I didn’t use my real last name because I didn’t want to talk to people who knew be in the past—not quite the concept of a social network. But I got tired of my friends talking in shorthand—finishing discussions they started on Facebook—so, one of them got me set up.

I pretty much kept up with family and friends, a few celebrities, and groups. Then I realized the other use of social networking—voicing your opinion. Every now and then there would be a political outburst, but I was able to ignore it because it was their wall—their opinion. I mean, I didn’t want anyone contradicting me, and there is that pesky 1^st Amendment, which I believe in and support, so even people who say things I don’t agree with have a right to say them. Caveat—they have a right to say it as long as they don’t encourage violence or cross a line with obscenity and hatred, i.e. white supremacists cross a line.

Then the presidential election started winding up, and I found myself on Facebook and news websites even more. There were more political outbursts that I wasn’t able to ignore. Then Donald Trump was elected president, and the world turned upside down (humming Hamilton song to myself now).

But I felt constrained. I didn’t want to be rude or upset my conservative friends and family by showing my real anger and fear of this administration, and I didn’t want to upset my liberal friends and family by showing my frustration with what seemed to me over-the-top complaining and name calling. But what drove me crazy about both was the victimhood and fear mongering. I’m guilty of it, too, and am tucked in nicely to my bubble. Eventually, though, I couldn’t take one more person demanding that I make a phone call to my representative or click a vote for some poll. Worse, were the people telling me to get over it and to, most recently, quit making a big deal out of everything and just calm down.

I ask you, what woman likes to be told to calm down? Cripes!

So, here I am, typing and rambling on trying to make sense of all these feelings and finding words to use to describe them. It’s not just politics. I’ve hit my 50s, so there’s a bit of a mid-life crisis going on, too. But there’s good stuff, too, I can write about. I have a great husband, the 2 cutest dogs on the planet, I knit, I spin, I weave, I write, I read, and I’m sure there’s a lot more out there I want to learn about.

I just need an outlet to help organize my thoughts about it all. 

Kell