Every night I had the best sleep yet I woke up like it was 3am. Drowsy. I was ready for bed again. It was always 3am, every minute of every day. So spaced out and having to dodge the feeling of needing my bed. At best I was able to hold a conversation and maybe complete at least one taxing thing in the day. At worst I was clumsy, forgetful, couldn’t function, slow reactions and slowly crashed out into a deep sleep as soon as I hit my pillow. Every move took my energy away. I love the great outdoors yet the last ‘normal’ walk I did was just 6 miles and I felt very weak on the way home. After that, the last bike ride I did was 14 miles and a ride I would normally class as easy. I had to stop, every pedal stroke was heavy, my body ached. I called my partner but he was at work. I just couldn’t face the big hill I still had to climb to get back home. There was no alternative route. I got off and walked, grovelling. I never walk, it was against every fibre of my whole being!! Something was very wrong!
Fast forward and I was referred to an Occupational Therapist (OT) who told me I had this thing called fatigue and I must stop my level of exercise or I could make myself very much worse. I was stumped. I couldn’t get my head around this…
Me: “But I’m fit enough, I’m used to doing 10-mile hikes up big hills and this walk is flat” I argued.
OT: “No, don’t attempt it” she shrieked. “You struggled on your last walk and you’ve been struggling on your bike rides, that was your body telling you there’s a problem”.
Me: “Oh!” The very big penny dropped and landed smack in my forehead.
I’ve never had fatigue before so it was a shock to suddenly have to not do the things I love. Apparently when you get fatigue unless you stay within your limits, any form of exercise, regardless of your fitness, can harm you. Many end up in bed for days at a time. What will I do instead? Where will I go? Who will I see? Gosh, I was totally out of my comfort zone now. I was taught how to use Pacing to manage my condition. I like to grab Bulls by the horn, and this was one big Bull, so I grabbed it and made Pacing my new life mission.
Apparently, Pacing is currently the only technique used to help people with chronic fatigue. Getting used to this new way of life has taken determination, oh and for the country to be put in lockdown, for me to grasp it. You see for me I was in the best position. Can’t see anyone, can’t go anywhere. It was the perfect time to get my head around pacing and work my way out of this nightmare. I worked out what I did in my day and how long I could do each thing, then I tried to stay in these limits. Ha! As if it’s that easy. It wasn’t and still isn’t, but bear with me…you see every time we use energy, we spend imaginary money. My high energy tasks cost the most at £10 and my low energy tasks are £2 a time. A healthy person may have £1000 in their daily pot. I’m fatigued so I have £100 per day. I must spend it wisely or I will crash into bed and the more I do before that crash the longer I will be asleep for. It is also good for me to have money left over at the end of the day. This sets me up better for the next day. So, I worked out what my activities cost and then lived my life. Simple? Wrong! It’s soooo hard. I mean it’s just not living a life. Who times themselves watching TV? Who works out how long I went outside for, how far I got to and how I’m feeling? Who times how long I stood and made dinner for before I had to give up and sit back down? And who counts how many trips upstairs or to the kitchen I’ve had? Yet, there I was noting it all down (which also takes my money) and it’s the only way to get through this illness. It took weeks to work out my limits and some stuff fluctuates, making it even harder to figure out. Still keep on keeping on…
The next step is to make up a daily timetable. I’m allowed up to 3 high energy activities per day (£10), a few more medium level ones (£5), the most should be low energy stuff (£2) with some added relaxation time (free).
Relaxation, I mean real actual relaxation, was new to me. It’s things like meditation, sitting listening to the birds, mindfulness, listening to café music. I find relaxing the hardest thing to do. My brain kicks in, like someone put a coin in a Postman Pat ride-on, and it suddenly wants to be at its most active. I lie there trying to switch off to find calm. Every time I reach for my phone in a bid to occupy my mind, and before I know it an hour has past and there goes another fiver! The times I’ve purposely left my phone upstairs or in a random bag as an ‘out of sight, out of mind’ tactic. It never works. I end up using more energy getting to it again. It does get easier though and now I’ve found my own way to relax, I can fill some time enjoying peace and quiet. I personally like sitting outside daydreaming while drinking a coffee. Unless there’s a neighbour chatting, then I can eavesdrop (I can’t help it, they talk loudly!) Otherwise, I’m a serial daydreamer, have been since childhood and all school life. It comes easy to me. I let my thoughts just come and go.
It’s taken time not to feel guilty, but allowing time to relax in my day, is not doing nothing it is complete rest for my body to heal. Peace of mind that doing nothing is my doing something to help myself and Pacing, after all, is the only way to manage fatigue.
See Pacing Menu to find out more about the Pacing technique.