Consistent Inconsistency

Things my appearance at XYZ event is dependent upon: (other sick folk, feel free to continue the list in the comments).

1) My water weight compared to yesterday. If it's up significantly, I feel like a beached whale and will probably explode if someone bumps me in public. If it's down significantly, I will feel like a cosmic syringe was used to suck the very life from my bones.

2) The proximity of the bathrooms to XYZ event. Cafes and restaurants are usually a thumbs up. Parks with port-o-lets 1.5 miles down the hill from the parking lot, a thumbs down.

3) My general state of vomitiness (it should be a word). I enjoy listening to someone dry heave through lunch as much as the next guy, but it's embarrassing when you're the person dry heaving.

4) The Headache. There is always a Headache, but most of the time it isn't severe enough to warrant cancelling things. When it makes it unsafe for me to drive or supervise my kids outside of the home, thumbs down.

5) The cold. My body with its failing heart functions normally between 60 and 75 degrees. It's a small, sucky window. If I'm exposed for too long, my hands, feet, and face become numb - even at 55 degrees if the wind is cold. Next come tremors, then full on body spasms as my nervous system rebels against the deprivation of blood to the extremities. This isn't just "not liking cold weather," it is an involuntary reaction to loss of proper blood circulation.

6) The heat. Especially with humidity, I feel like someone is sitting on my chest every time I move - walking, sitting, standing, getting in and out of a vehicle, etc. My lungs are trying so hard to extract oxygen from damp air surrounding me that any other expenditure of energy and oxygen winds me. I hide this by breathing quietly through my mouth and restricting my movements, but eventually, I will pass out from lack of oxygen to the brain. It may feel "a little muggy" to everyone else, but I am more sensitive to humidity than any other single environmental factor - it is worse than a cigarette smoke-filled room. Those kids in the Abuterol commercials with asthma? That's me on the inside, and soon on the outside if I can't get the moisture out of my lungs.

7) Panic attacks. Another side-effect of medications. They do not happen often, but have happened in large crowds or in gatherings where too many bodies are stuffed into one house or room. I have to hide in the bathroom and tell myself to breath. If I know I'm likely to have one at XYZ event that day, I won't go. Even if it means cancelling at the last minute because I don't want to risk leaving my kids by themselves for half an hour while I try to stop the craziness in my head.

8) Walking distance. Handicapped parking is typically a joke. In the heat and cold, 50 ft. between my van and the air conditioned building can make a huge difference.

9) The past and the future. What I did yesterday affects how I feel today. What I must do tomorrow may dictate that I do nothing today. I need plenty of time off of my feet, at rest, to recover from or prepare for a busy day. The more consecutive busy days, the more time I need to rest in between. I used to push on through and I've landed myself in the ER twice now because of it. This means I'm going to miss important things, things that I am depressed about missing, and often times, things I promised my kids we would do.

10) The present. Sometimes I slept well, my weight hasn't changed, my stomach and head are only mildly annoying, and I still feel like absolute crap. I will randomly decide I can't do something I committed to, and I do it for my own good because I know the consequences of pushing through anyway. Sometimes I will choose to pay those consequences, but there is no consistency - my condition is ever-changing and I feel randomly good and bad for no explanation, so trying to explain how and why I can do something one day and not the next is pointless. I don't understand it either, and neither does 25 years of HCM research. It just is.

I offer this list because I know it must be confusing to some people that I can do something one week but not the next. Or why I could tolerate the temperature one day but not the next. Or why my diuretic had me living in the bathroom yesterday but not today. All I can do is guess, go by how I feel from one day to the next, plan the best I can, and commit to as little as I can. It is not what I choose, it is what has been foisted upon me, and I will do the best I can to be consistent. But inconsistency has become my life over the last year or two, and it will only get worse as I progress.

Hopefully the list can be wiped away post-transplant but for now, I have to live around it. I'm fortunate enough to have friends and family who understand that, but many sick people don't. They don't need to fight a battle of wills with people's unrealistic expectations on top of fighting their disease.