Ask any patient what ME is and you’ll find you’ve opened a can of words.
You see, ME is a life altering illness and so you’ll be told about a past life and a present one, the present one filled with limitations and regimented regimes. The past one forgotten.
Then there will be references to crashes and the ill effects of stepping beyond a body’s capabilities. As for the daily symptoms, there are a lot of those: headaches, nausea, the low tolerance to noise, the heightened senses, the sore muscles, bone pain, severe fatigue, electric-shock-like-pains, digestive disturbances, cognitive difficulties. The list is a long one. You see, ME patients aren’t just tired, or a little bit tired, we’re what I call absolutely whacked.
Now comes the puddle of horse poo: like that of a piano keyboard, ME symptoms differ everyday. There are days when my body’s dynamics are that of p for piano, the symptoms present but lessened and then there are the forte days, when everything is ramped up.
On the lessor days I can manage to do a few small tasks, be it writing for a short period of time, going food shopping with my husband, having a visitor for an hour or gentle weeding or light work in the garden. These tasks are done in spite of having ME, not because ME has toddled off and of course my symptoms will be exacerbated as a result of these tasks. Then there are tasks I simply can no longer do, like attending social events such as weddings or standing for long periods of time, or walking distances.
ME is a constant, an ever present. A debilitating illness patients have to learn to live with, to adapt to. ME is not just being a little bit tired or a little bit off, ME is living constantly within a limitation.
As I said at the outset, ME is a can of words.