Busy Doing Nothing

Yesterday I walked further than I had since my trip to London last October to watch the New York Giants beat the Green Bay Packers. Incidentally one of the good things about watching American Football is that you get to sit down for 3 hours in the fresh air without feeling guilty about ignoring the washing up. Anyway, today I’m basically broken. Which is frustrating, but also fine. For me it’s all about perspective.

I’m basically in pain all the time: neck, shoulders, middle and lower back, left elbow, left glute, left thigh, left knee, left ankle, left foot, left toes. Sometimes I’m really tense through my neck and shoulders, particularly when I’m pre-migraine or post-migraine. When I’m fatigued I experience pretty high levels of discomfort in my intercostal muscles, as well as being very heavy limbed. If I’m really struggling, and when the weather is stormy, everything hurts, with the possible exception of my nose.

If I overdo it – and I’ve been training myself for years to avoid this, with varying degrees of success – generally my legs feel like lead, I’m too tired to say anything beyond monosyllabic grunts, and will be crawling up the stairs on my hands and knees if I want to go to bed. Plus I get really angry, which is nice for my family…..

NB As always none of this is to elicit sympathy. It’s just that it can be a lot easier to manage people’s expectations by writing this stuff down, and hopefully next time anyone reading this comes into contact with a chronic illness sufferer or someone with a hidden disability, they know what to look out for.

There a lot of different factors – internal and external – which can trigger pain, fatigue and migraine. Whilst you can mitigate against some of them – eg by avoiding large crowds, using noise cancelling headphones and/or sunglasses, always keeping emergency food and medication with you – it is impossible to eliminate triggers completely. Additionally it is possible to be pretty active one day without suffering too badly, but do very little on another day and be completely wiped out. Or to do some moderate exercise – such as modified Pilates – and be relatively pain free, but then be in excruciating pain after loading the washing machine and boiling a kettle.

All of which leads to the inevitable conclusion that the best way to treat chronic illness is to not be chronically ill in the first place. Oh damn.

Dreaming Trees

But here comes the perspective bit: today I’m broken because I was busy yesterday. My wife and I ran a couple of errands, I lit a fire in the lounge, made tea for the family, and then we went for an evening walk with my parents – who have been visiting for half term – to see the Dreaming Trees exhibit in Howard Davis Park (hence the photos). Additionally life has been pretty busy since Christmas, and my body is still recovering from a bout of Covid in December. Add in a wedding at the start of the week, and it’s totally understandable that I’m basically broken. In the past this combination of factors would have undoubtedly pushed my body off a metaphorical cliff.

Two years ago, that combination of factors would have left me in bed for a couple of weeks. Plus I’d have probably been unable to travel for the wedding, which would have been a big psychological blow. I’m broken today, and will probably be broken tomorrow too, but I am in a much better condition physically than I was 2 years ago, and for much of the decade before that. It’s hard to keep that in mind, and to put that level of perspective on things, when you are so tired and sore that your body is telling you to stay completely still whilst your brain is saying “what’s wrong with me? I should be getting up and doing stuff!”.

Do trees see colours, or just different shades of green?

Rest and recovery is really important, so I am training my brain to accept that recuperation is an activity in itself. Here a few little ways that I make sure I get the downtime that I need:

• Giving myself permission to rest and, sometimes, asking my family for permission. This may sound odd – I’m hardly chained to the kitchen sink – but it enables me to rest without feeling guilty about it.
• Adding rest periods to my calendar and my to-do list.
• Listening to my body and tailoring my activity levels accordingly. Sitting in the garden might be the best I can do on a particular day, so I just accept that (sometimes).
• Reading, listening to music, playing with Lego: anything that means I’m not constant staring at a screen.
• Making time for reflection, so that I can remind myself where I’ve come from during my journey through chronic illness.
• Celebrating small successes. If I make it into the office when I really want to hide in bed for the day, that’s an achievement in itself.
• Allocating tasks eg My children unload the dishwasher, my wife sorts out the clothes washing, and I make tea. In the past I’d have probably done all those things myself, but it just isn’t viable anymore so we all muck in.
• Learning to say No. My family and friends know and understand my limitations, and know that I will do my best to honour any commitments, but sometimes it’s out of my hands.
• “Decompression time”. If I am overstimulated or fatigued, spending some time alone in a darkened room, or putting my headphones on, or walking round the garden a couple of times enables me to “press reset”. Even doing some focused breathing exercises can make a big difference.

This is not a comprehensive list, and there are so many resources available to help people to avoid burning out, but finding what works for you is the most important thing. What works for me today is lying really still. In the words of Bing Crosby, I’m busy doing nothing. I may also end up being busy going nowhere, but it’s too early to tell either way.

Do trees dream about forests, or have nightmares about fire?