“So, you’ve been sick your whole life.”

April 2017

A physician said that to me a couple of years ago, and I was startled by it. I’ve had allergies my whole life, but I haven’t always been actively sick. I didn’t see myself as ‘sick’ until November 2011, but looking back, I am realizing that I haven’t been exactly ‘well’, either.

People are funny creatures, we gravitate to dichotomies- a child is either good or bad, a person is married or they are not, male or female… It’s fascinating- we like to categorize and label things, too. And oh boy can it make a mess… as a species, we spend a lot of time debating whether or not a particular label fits a particular person, or whether or not this person fits in this category or that. (More on that another time). How is it that I am now, suddenly, 100% convinced that I haven’t been well for 25 years?

Last week, I felt well.

It lasted all of about 5 hours, but it turned my head upside down.

We’re all familiar with the phenomenon of only really noticing something when it changes; the releif when an irritating sound stops, or your shoes feel SO much better without the gravel in them, or suddenly noticing that the sun has shifted for Spring. This was sudden, and startling.  Mid-afternoon, the day after an iron infusion. As I look back, for the life of me, I can only identify feeling this way three times. Once was when I was in my 20’s and I had reactive arthritis, and it improved literally overnight. I recovered from the arthritis, but as soon as I got up to speed, that feeling of wellness began to recede. It left so slowly that I didn’t really notice. After all, I felt the same as I had before I had reactive arthritis, so that meant I was well.

The second glimpse into wellness was about 18 months ago. Since 2011, I have been actively sick- at varying degrees, but most certainly sick. In September 2015, I’d been admitted to hospital, had been there for almost a month. All of a sudden I felt better, over the course of two days, like a switch was ‘flicked’. I could eat anything I wanted, food tasted right again. I felt euphoric, but it lasted less than 48 hours. That time, I knew exactly what was wrong, and exactly why I was feeling better, but wasn’t able to convince the right doctors of that, so I was discharged, and the feeling faded very quickly. I didn’t think that I would ever be able to reproduce the same environment as the hospital, so I never expected my mast cells to turn ‘off’ like that again. But it happened at home, so I have a real chance of getting there again. Staying…well, that’s another boat.

What was this sensation of wellness? I don’t have the right word for it.. Perhaps ‘energy’ or ‘power’, but only as the opposite of ‘fatigue’, not the opposite of ‘tired’.  It felt like an engine that finally ‘caught’ and started running efficiently. Me reserves are non-existent, but that day, a brief rest rejuvenated me. It was a window into what ‘normal’ feels like, and I haven’t felt that way for more than a day or two since I was 18. It feels as if I’ve been walking in molasses; It’s always been there, I suspected that most other people didn’t have the same molasses they were sticking to, but I couldnt see their feet; we can’t ‘feel’ what someone else ‘feels’ and words are poor descriptors. I’ve been told for 25 years that my weight was my fault, maybe a genetic predisposition, but that I couldcontrol it. I was told that my energy was lower because my weight was up. I was told that inf I increased my excersice, my energy would go up, and my weight would go down. It’s always done the opposite. So I would end up heavier, in more pain, and feeling worse, with the added bonus of feeling like I had failed. At some stage, I stopped trying, because at least I didn’t gain more weight that way.

Finding myself with my mast cells calm and engine running properly was both very validating, but also sad. I wasn’t fat or lazy. I was sick, or at the very least not well, for my entire adult life. I suddenly ‘get’ some of my friends, how much they can physically accomplish in a day. I’ve never understood why anyone would choose to play sports as an adult. Or choose to hike the Grouse Grind (a grueling hike…if it were steeper you’d need ropes. People actually run up it…those who want to preserve their knees take the gondola down). So that’s what normal is. Wow.

How I got there, and how to stay there is likely going to be the theme for the next 6 months of my life, I think. The feeling didn’t last, of course. The work required to keep my body in some semblance of balance is very difficult, and very delicate. (I tease Hubby that he clearly did not get the ‘low maintenance’ woman he was looking for.) Knowing that it is possible to not be in pain, to not be tired, to want to move; it makes my head spin.

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