Would you leave the house with your phone charged to just 20% battery?
Rather than letting it freeze and die pretty quickly, wouldn’t you make sure it was charged to at least 80, maybe 90%?
Having CFS means your battery just doesn’t get to 100, no matter how much you rest. And if you let it go to zero and keep going, you get into a deficit. This has a knock-on effect for the next day, and perhaps the next week or month, or even the next year for some people. Spoon theory is a good description of how we try to navigate life within the confines of limited energy. I was reminded of how important this is again the other weekend, when my mum took me to the beach.
As I haven’t had any sort of “holiday” since October last year, and haven’t been well enough to travel anywhere except home since November, I was really looking forward to a change of scene. As someone who loves travelling the world, being unable to go to BBQs or drinks in the sun this summer, let alone abroad, is hard, and I thought getting some sea air would do me some good.
The past 2 months have been pretty tough for me health-wise. After making gradual progress until June, painstakingly rebuilding my strength little by little, a series of illnesses out of my control meant my energy took a severe tumble. This has, needless to say, been incredibly demoralising. The day before we left I’d had a good day, however, managing to travel to my mum’s house, attend an appointment and go out with my friend for dinner. All good signs for the trip, right?!
I clearly overdid it that day, and the dreaded PEM set in as we left (Post Exertional Malaise is where you seem fine doing an activity, but get a delayed reaction up to 2 days after).
The experience has been an opportunity to remind me how important it is to recharge my battery before going out. It also highlights how confusing this invisible illness can be to outsiders who see me looking well because I’m managing my energy effectively (ie. not leaving the house if my energy is low, getting groceries delivered, or spending days resting up before a big outing). They are fooled into thinking that, because I’m lively and animated when they see me, I must be fine! But they don’t realise if I were to leave the house that day, it would be a different story. They don’t see the next day, or the even the next hour, when I’m so tired I can’t get out of bed, or I have to rest for an hour after showering, or I don’t have the energy to even speak or read a book.
The day we left I was having a bad day, energy-wise- I knew from the moment I woke up with that thick, foggy feeling of my body saying “no thanks, let’s stay in bed today!” Normally I would do this, and wouldn’t feel amazing, but I would manage the day so that I would be expending minimal energy, trying to recharge and hopefully feel better soon.
Instead I had to do a 2.5 hour car journey, and hoped for the best. The journey was tiring, and I got that all too familiar feeling, like someone’s pulled the plug, pretty quickly (that’s when I know I’ve really overstretched my limits). I didn’t have the energy to speak to my mum in the car; she drove in silence as I tried to conserve energy. When we arrived at the AirBnB, I could hardly bare speaking to the poor host. It took all my strength not to tell her to shut up as she showed us round! When my energy is that depleted, it makes me incredibly grumpy – not because I’m a mean person or can’t control my anger – but because any sort of stimulation (noise, light, thinking), is just too draining. Imagine having the flu, wanting to just close your eyes and curl up in bed, but you look completely fine and so naturally people treat you accordingly.
The next day, I wasn’t recharged – I was still in an energy deficit. It was so painful because I wanted desperately to go to the beach, to see the sea and hear the calming sound of the waves I’d been dreaming about for so long. But by the time we’d managed to buy some lunch nearby, I had already used what little energy I had for the day. If I were at home, it would have been another stay-in-and-rest day, but as we had come all this way, we decided to try to go to the beach in the late afternoon, when the temperature was cooler.
At this point you might think, a nice rest on the beach could do me good?
On a good day, yes it might have been a bit tiring, but I certainly would have benefitted and found it relaxing. However, it wasn’t a good day, and as soon as we arrived, my body was screaming to get me out. That calming beach I had been dreaming of for months was suddenly too bright, the sound of children playing like a drill to my ears, and I felt the weight of everyone around pressing into me.
I lay down and put my headphones in to drown out all of the sound (including, sadly, the sound of the waves!) and closed my eyes, whilst my mum went for a dip in the sea. I lay there trying desperately to soak up the sun and breathe in the sea air, but my body was too far gone at this point. We left after an hour, and I headed straight for the car, dragging my heavy legs up the stairs, desperately avoiding people, not wanting to engage or even look at anyone.
The next day, although of course I would have loved to have had lunch by the sea before we left, we ended up sitting in a (dark and cool) M & S cafe, in an ugly, purpose built shopping complex (with lots of convenient parking spaces right next to it!). This was certainly not the picturesque break I had imagined, but I felt so much better for it, and I knew that if we’d tried to venture into the town again, I wouldn’t have made the journey back home. But this way, I had the energy to talk, I felt more relaxed, and it was actually pretty enjoyable to be honest. I managed the journey home, tired and needing a nap at the end, but not so far gone that I needed dinner in bed.
So what did I learn from this? It is a lesson I keep learning. That it is so important to listen to my body, though it often gives me messages I don’t want to hear. But it is these times when, although the last thing I want to be doing is lying in bed on a warm, sunny day when the beach is calling me, respecting what my body has to say is so important. Though it might appear to be weakness, it takes a huge amount of strength, courage and self-discipline, to hold back and do less. It also shows me how well I’m managing to pace, in that these kinds of days don’t happen often.
Thinking about what I can do, however limited, is so important. It’s more than some people, and it’s less than others. And even when things don’t turn out how I want, which let’s face it, really hurts, not all is lost. I know that if I keep listening to my body, keep having the strength to respect what it says, keep recharging my battery, I’ll get there. I’ll get to the beach one day, and I’ll have the energy to listen to the sound of the waves.