It’s 2015 and I’ll be turning 34 next month. When I met B, I was 31 and had worked very hard to lose ten pounds over many months, getting as fit as I’d ever been, getting ready to join the dating world. It felt good to look down at my midsection and not wish that my belly were smaller but instead realize that it looked darn healthy and good (far from a size 0). I liked the way my clothes fit; I was happy to let B run his hands over my torso. I maintained that weight for six months, and I felt like it was the new normal, that I wasn’t constantly depriving myself, that I could keep it up.
Then two things happened. I got the nex.planon birth control implanted in my arm, and the holidays arrived. I gained a few pounds over the holidays, and I’ve never been able to get back down to where I was. Weight gain and difficulty losing it is a side effect of being on birth control for some, but it’s always sounded silly to me. Just burn more than you take in, right? So, I’m up a few pounds, and can’t get it off, and gaining a few more pounds over subsequent other vacations and holidays means that, to my frustration and sadness, I’m back up those full ten pounds.
But ten pounds is not much, right? How much difference does it make, really? The skeletal system peaks at 30. Everything after that is downhill. And for people with cerebral palsy, the wear and tear is often felt much earlier. I’m not alone in really beginning to feel the effects of aging by 25. When I was a little kid, explaining my disability to some curious schoolmate, they’d sometimes ask me: does it hurt? No, I’d say. And I’d wonder–why would it hurt? I just walk differently. Fast forward a couple of decades and I began to understand. Tight spastic muscles, an awkward gait, and daily pounding on my joints from everyday life led me to feel old and exhausted, just tired and sore, around 25, 26. But we deal with it, of course, and life goes on.
But I wondered if I would feel any different, feel better, have more energy, if I were a little lighter. Ease the pressure on my joints a bit. My parents had always pushed my to stay active and as fit as I could, knowing how important it was. But I was a sedentary introvert, who’d rather read than do anything. Physical movement wasn’t enjoyable, and it was hard. (Imagine that you hate exercise and add a disability to that!) I grew up though, could look at the situation rationally, and realized that I did need to exercise, more than just walking. I started using a recumbent stationery bike (velcroing my feet to the pedals so they would stay put in the correct position). I felt good, doing something so important for my body in the long run. But I ended up injuring myself, messing up my right sacroiliac joint (SI joint) in March of 2010. It was a common sports injury (oh, the irony), and there wasn’t a whole lot to be done (it’s a joint that barely moves in the pelvis). Rest, heat, ibuprofen. All temporary and not that helpful.
Suddenly, I was living with chronic pain for the first time in my life. I mean, it wasn’t sudden. It happened, I tried to deal with it, and I realized it wasn’t going away. Eventually I went to physical therapy and was given exercises and a belt to wear (snugly, all the time for a few weeks, under my clothes) to see if that would help stabilize it. Like the majority of people, I’m terrible at sticking to an at-home exercise routine. But I tried. It didn’t help. I met B. And I was just someone who had a painful hip, not helped by my tight cerebral palsy muscles and awkward gait. I learned to live with it. Sometimes I’d do something to make it flare up, and I’d realize that it had gotten a little better overall, that I could live with it.
I tried to keep making good choices for myself, physically. Now that the bike was out, I started pilates in January 2012. I hurt my left SI joint. It felt like a cruel joke. Maybe I shouldn’t be active, after all. Maybe I should just sit here and preserve all the uninjured parts I have left. Maybe my body wasn’t meant to be active. But the pilates I was doing wasn’t intense; it was supposed to be just what I needed. I switched instructors, to someone who has studied anatomy, and many other teachings beyond pilates: yoga, Franklin, Feldenkreis, and more. She is incredibly careful, gentle, and slow. I do much more mat work than machine work. I wonder idly if I’d gone to her in the first place whether I’d have messed up my left SI joint at all. No use in wondering that, of course.
B bought me a hand cycle and we would go out together for miles. Finally I was getting high intensity, but also low impact exercise. My arms were buff. I felt like we had accomplished something together. In May 2014, B and I got married. I managed to get within three pounds of my original weight and hoped I could hang onto it.
One evening at the beginning of June, my right knee ached. No apparent reason; I didn’t have knee issues. A few days later, it was still there, and I started to worry. After a month, I went to the doctor, just as the left knee started to hurt as well. He said a fold in my inner knee (the plica), which some people have and some don’t, was inflamed, and that I needed to ice my knee as much as I could and that should do it. I was really consistent about icing. I stopped my daily walks to give it time to heal. It didn’t. When I realized both my knees were hurting, I wept. Really. I just didn’t want to think of another, bilateral, chronic pain entering my life. Wasn’t both SI joints enough? Did I really have to start having knee problems? Were my ankles next? All my joints giving in, one after the other? It’s a little bit of a pity party, I know. But also completely valid, to want to be healthy, and feel good. Knowing that it could be worse doesn’t really help.
I just feel enormously SAD that I finally get married and start my life with my husband, who is young, healthy, and active, and new pain comes into my life and doesn’t go away. Being in constant pain makes me tired. Subdued. It affects my sleep. How I feel. My relationship. I don’t want to be in pain all the time. For myself, and for my husband. For our life together. It’s incredibly depressing to think that B married an old, decrepit lady instead of a 33-year-old young woman, who is generally fit and healthy, and who also has mild cerebral palsy. How much is my CP affecting the SI joints and knees? If I didn’t have the disability, would I not have had these injuries? Is the disability preventing these injuries from resolving themselves? Why even ask those questions? B knows how much I’m struggling. I feel like I’m literally mourning my once pain-free knees. He tries to be supportive; he doesn’t want me to be in pain either.
So here I am. Feeling old. Feeling broken down. Indulging in too much food and in dessert too often. Knowing that I need to work with what I’ve got. Back in physical therapy. Knowing that rest and heating pads have their place, but also that inactivity is not the answer. Knowing that I need to get these ten pounds and maybe more off my knees. If my own health is not enough motivation, then what is? I don’t believe that losing some weight will take the pain in my knees away, but it can’t hurt.
I’m taking thirty days to be vegan. Need to break my current love affair with dairy. When I don’t eat cheese, I don’t miss it. But when I start eating it, I can’t stop. Saw an article about abstainers the other day. People who are able to give up something completely, but who can’t manage to have something in moderation. That’s totally me. I rocked Lent when I was growing up. So I’m not giving up sugar–as I have in the past, and once again, felt really good about it, and it wasn’t even hard. But it couldn’t last. I’m trying to be realistic and sustainable in my choices. I’m using a small dinner plate and watching portions. I’m having dessert, but only weekly, not daily. I’m back to tracking my caloric intake. I’m trying to walk more, knees and all. I’m trying, again, to commit to the PT exercises. I’m trying.