So I was all set to head into work today – I’d built up to it, mentally prepared myself, rested (not that it makes a difference, my exhaustion isn’t linked at all to how much sleep I’ve had or how much I’ve rested, but hey! Maybe it helps a bit). Then as I was all ready to leave, London decided to pull out the biggest downpour I’ve seen in a long time. Well played, London. I should just stay in bed? Ok!!

But no. Determined, I waited until it eased off a little and then set off down the hill to the tube station. I had to take it very slowly and occasionally stop to catch my breath and calm my racing heart. In the rain. Yes it was windy also, my umbrella was only partially effective.

With every step, it felt like my feet were disconnecting themselves from the rest of me – the neuropathy sends these weird shudders through my feet, which makes it feel like they remove themselves and travel further forward than my heels do. But I finally made it to the tube station. I had avoided the tube for ages, and suddenly I remembered why. My legs almost give out on me when I walk down stairs, my knees just buckle. So I have to hold on and take it slow.

I had successfully avoided peak hour by venturing in around midday. Coming up stairs, I have to take a few at a time, then rest. This would not have worked during peak hour. It hardly worked at midday.

By the time I resurfaced, I had pretty much used up all the energy I had and I was feeling drained when I got to work. I collapsed in my chair, puffing and needing a nap.

But then guess what happened? After having a sit and a rest for a bit, I actually started feeling ok. And in fact I ended up lasting for about 5 1/2 hours and only really left because I wanted to avoid the tube rush home (Which I failed at anyway).

But I think my main take home message from this is that physically moving does take it out of me but it turns out I could manage a second wind today! Or at least recover from that bout of excessive exhaustion. So we’ll try again tomorrow!

I really need to get one of those badges from TFL that says ‘give me a seat’ or whatever. My friend Shiri quickly made me one in the seconds before I left work today but it fell off before I got to the tube! So I stood all the way home.