What it's like to live with a progressive neuromuscular disease

Tuesday, November 8, 2011

When a cold was just a cold…

This last month has been tough. I have literally been sick with one cold after another for what has felt like an eternity. And though, like most people, I’ve never enjoyed being under the weather, ever since being diagnosed with HIBM, being sick or suffering some sort of physical discomfort has taken on a whole new meaning.

In the old days, pre-HIBM, being sick meant feeling temporarily miserable. It was an annoying interruption in my day-to-day routine, but nothing that I ever really spent too muh time worrying about. Sure, it was frustrating not getting to the gym, but I could force myself to enjoy the down time and even the side benefit of not having an appetite and maybe losing a few pounds. Most of all, I could look forward to when I would feel healthy again and get on with my life.

These days, I long for when it was simply annoying to be sick. Now, being sick triggers a cascade of anxious thoughts and fears, some irrational and some, unfortunately, completely legitimate.

The first stressor is the fact that I can’t exercise. Between having two kids and working more and more, exercise has been cut down to about once, maybe twice a week. People talk about how exercising keeps them sane, but for me it’s so much more than that. It is almost the only way for me to have some peace of mind that my body can still do certain things. It is one of the primary ways in which I cope. It used to be about staying in shape and keeping my figure. Now it is just about trying to momentarily reassure myself that my body isn’t completely failing me.

But it’s not just the psychological benefits that I gain from working out. The truth is, my muscles are always atrophying at a slow rate. If I don’t actively work on maintaining what I have, I will lose that strength. And thus far, that loss is irreversible. It’s not as if I can get back in the gym after a few weeks and regain that strength or rebuild that muscle. So every day that passes without exercise brings with it a heaviness, a deeper awareness that I am losing strength and not doing anything to prevent it.

When I’m sick, I can’t afford to not eat right or get enough sleep, despite my lack of appetite or tossing and turning in the night. I don’t get to not take care of myself without paying a high price. I don’t get to skip breakfast or eat cereal for dinner or be up half the night coughing without wondering how that’s affecting my disease, my muscle strength, my future. The pressure can get intense. Sometimes, I just want the luxury of not caring.

When my body is even weaker and clumsier than usual, I am more dependent on others, namely my husband, and that awareness catapults me into a dark place. As I lay in bed in the early morning and hear the footsteps of my four year old down the hall or the cries of the baby who needs to be picked up from his crib, I am often overwhelmed with panic. The thought of pulling my body out of bed and shuffling across my room is too much in that moment. And when I’m sick and I can’t even force myself to motivate to get up and out, I start to have flashes of what my future may look like. I start to hear in my head the words that are always used to describe HIBM, “severe incapacitation within 10-15 years of onset.” I start to quickly re-calculate for the umpteenth time how long I’ve had it and how much longer until then. Worst of all, I start to wonder/dread what it will be like for my dear, sweet, loving husband, who already has to bear so much of the burden on my behalf. I look over at him, knowing he just wants to stay in bed for 5 more minutes and I am so in touch with the hatred I have for this disease and the fact that he has to be in this with me. No matter how many times he reassures me, I always return to the same thought, “he doesn’t deserve this.”

Living with HIBM means constantly trying to balance staying engaged in the present and feeling grateful for all that I do have against being overwhelmed by my reality, by the ugliness and inevitability of this disease and by the frightening unknowns of my future. I know I am always saying this, but it’s the greatest challenge for me. I devote so much psychic energy to trying to stay calm, to trying to live in the now, to trying to not fast-forward every time there’s a new loss. I suppose it’s no wonder that I always get sick these days. I can only imagine the stress hormones that are being released on a daily basis as I try to keep the low grade, baseline level of anxiety under control. When my defenses, both psychological and immunological ones are lowered, I am much more in touch with what’s really happening to me and I have much less strength to fight it. I become too aware of the fact that even when I do recover from my cold, I will still have to continue to fight this disease.

There’s just no way around that reality. Sometimes all I can do is accept it. And that’s just so incredibly unsatisfying. Especially when I’m sick.

Please visit the NDF website for more information about HIBM and how you can help fund a cure

Neuromuscular Disease Foundation

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