The January disillusion

I’m prepping a talk on living with a chronic illness for medical students. I’ve been doing this for some years, updating annually. It’s a completely different experience from applying for welfare ‘benefits’, but it has the similarity of making me stop to think about my health, what I can do and what I struggle with. And how my normality has changed significantly since 2006.

I bet your life has changed a bit too. The medical students are in their first year- many of them will have been in their first year of primary school in 2006. Nothing remains unchanged. Except, it seems, my ability to be surprised by my ME. It’s unpredictable and inconsistent, and I am still surprised by that.

A few not busy weeks, some dry, bright days & a family keen to spend time together doing wee walks had me feeling like an outdoors sort. The walking boots saw action in the local forest, by the river and a new to us park. What fun! This is the sort of thing normal folk do! Teenagers, voluntarily walking with their parents! What’s not to like?

No mention of politics today

Now it’s a dry bright Sunday afternoon and I am home alone. My people and the bouncy dog are out without me, because today my legs aren’t up to much. This entirely predictable normality is a surprise (you know about my cognitive problems, right?) and a disappointment. I wasn’t thinking I was ‘better’; I was beginning to hope that I could do things without ridiculous pay back. I wasn’t foolhardy, I was resting before during and after, but still I had hope.

I should have known better. The football fan in our house always says it: it’s the hope that kills you. Time to lower my expectations again.

9 thoughts on “The January disillusion

  1. Yuk. So not fair. So much courage needed. You show it always, and maybe surprisingly to you, that helps the rest of us, me anyway. Sometimes I hate that f^&%#g word ‘acceptance’ it covers up so much frustration, Dammit, just have a bit of hate for a while, just don’t turn it on, and get well again when you can.

  2. But you do keep trying, because you are brave. And you did have walks with your teenagers. Today wasn’t so good, but other days were. Keep hoping, and trying, and being you. x

    1. You are right, of course. I’ve had fun. But you know me, I overreact dramatically to a non crisis, tell the world, get over myself & get on! You’re lucky I didn’t share the mouse story…

  3. Good luck with your talk. Medical students need to hear from people in addition to their text book training. My daughter-in-law has chronic illness and suffers the physical and emotional swings you describe. I think of you often, Fiona. You’ve taught me a lot about how to be sensitive to what my dear girl goes through. All the best to you, my friend.

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