I don’t have a new supply of energy each day…
And so any activity I do needs to be spaced out quite well, and, even then, with all the will in the world I am not the one in control; M.E. is. We sufferers simply cannot give every day our absolute all because that would wipe out our whole energy supply for the next week, fortnight or month.
As sleep is never refreshing I never wake up being able to “seize the day” in the way we are told we must do to live our best life. If I have plans on, let’s say, a Saturday, it is not sensible for me to do anything else until at least the following Wednesday. I can plan and pace to my hearts content but am likely to still have to pull out of precious plans at the last minute due to the unpredictability of my health.
I still get carried away sometimes. It doesn’t happen often but I can’t honestly say that I am as sensible as I ‘should’ be all of the time. Everyone needs a break and if you’ve been stuck at home for weeks on end it’s easy to see why you might push yourself to read a little bit of your book before you completely forget the plot line due to leaving it for so long. Or pushing yourself to have a bath on a day when you know the heat won’t do you any good but you can actually smell yourself so you do it anyway! At least you smell good while you lay there in bed still in your wet towel, too exhausted and dizzy and nauseous to get your pyjamas back on.
But that is not a sustainable way to live this poorly life. And so for the most part I live well within my baseline. On the days I feel well enough, I always get dressed. I have learnt to delegate and accept help wherever possible to protect as much as my energy supply as I possibly can. Pride costs far too much and even if I still sob through each hair wash and hair brush that Mr Tree Surgeon has to do for me, at least I have then saved the energy to sit and chat with him about his work day or play a game of UNO on the sofa together.
Besides, my ability to “push through” (as society and the majority of doctors tells us to) is very, very rare. So don’t start thinking that if I can through caution to the wind one day that I will be able to do it again the next day or week. Pushing through brings immense suffering afterwards and 99% of the time I am unable to push through anyway because of the severity of my illness. It is very rarely a choice I get to make.
For me, currently, the days of only being able to have an activity or leave the house once every one or two months are gone. Touch wood. I am able to now live more on a weekly or fortnightly energy allowance….
My energy is so precious and I have allowed myself to become even more particular about how I spend it. I have learnt to say no if I’m invited to see friends for example, at a certain time of day. Afternoons are best for me. I am still incredibly limited by the length of time I am able to socialise. Even just 15 minutes of chat will lead to suffering later. The suffering after a couple of hours is about the most I can endure. Any longer is near unbearable, however well I may know or comfortable I may feel with my visitor.
It still baffles people, 7 years in, that sitting in a quiet place chatting with friends is still exhausting. But when you break it down and look at what exactly it is that the body is doing it seems quite straightforward that a poorly body would find such a ‘simple’ task so taxing. Listening to and processing a conversation, adjusting t the pitch and volume and tone of another person, finding the correct words and slotting them into a sentence in the correct way to be coherent and on topic, sitting upright and having to get the blood pumping all the way from the heart to the head to the toes…
In truth though, I am still baffled by aspects of this illness when I stop to think about it properly. I am still learning the best ways to mould things around my health.
Last week I received a Capility to Work questionnaire in the form of an ESA50 form. I have been lucky, so far, with my overall experience of the DWP and the disability benefits system. I was even moved into the Support Group (without being told!) some years ago. Yet the mere sight of that wretched form on out dining table is enough to throw me into a spin. The fear, the dread, the stress, the anxiety, the feeling of a distinct lack of control over my own life…
I spend my poorly little life concentrating on the positives; on the things I am able to do rather than the things I am not. On the person I am now, rather than the person I once was. And yet I must now put on paper, in incredible detail, how restrcited my life has become and how far from functional I really am. I am unable to even fill in the form myself, enlisting the help of Wonder Mum yet again to be my scribe and form coherent sentences on my behalf.
And that is enough to bring even the chirpiest of souls crashing down.