It’s been three weeks since I’ve managed to write anything for SmartPonders. Not because the ideas haven’t been there – they have! You should see the drafts folder. But rather because of the pesky chronic illness I have. Those of you who have been following from the start will know all about it – especially if you’ve read the blog Overcoming Adversity. If you haven’t, I’d suggest giving it a wee read, as it will provide some context to this ponder. Essentially, I have ME (Myalgic Encephalomyelitis). I’m one of the lucky ones in the sense that over the years I’ve learned to manage it reasonably well. I’m still affected day to day, but I usually manage to get by, and usually manage to mitigate most ‘flares’ before they occur. Usually. There are always those times that no matter how hard I try, the flare will come regardless, and it’s not pretty.
As I’m setting out to write this ponder, the aim is twofold; to create transparency in who I am as a person, whilst raising awareness of the condition and how I manage (and sometimes don’t) the condition. One thing I know for sure is this is not designed to be a pity party. Have compassion and empathy, but this isn’t a feel sorry for me post. I hate that. I guess it links to the idea that everyone is fighting a battle that you know nothing about, so be kind. I’m a big believer in that.
The condition is one part of me but does not define me. However, an ongoing challenge I have is the guilt when I’m forced to take time off. I remember seeing a quote online once that really resonated.
‘If you don’t make time for your wellness, you’ll be forced to make time for your illness.’
Anonymous
I think this is absolutely true, but with the best will in the world, sometimes you just have to stop. What I mean by that, is that with my condition, there is only so much energy I have (as with all people) but it’s lower than that of a healthy person, and it depletes quicker, with me never really feeling ‘fully charged’. At the moment, this most recent flare has at its peak, lasted just under a week. What that looks like for me is extreme fatigue where I’m sleeping at least fifteen hours in each twenty-four-hour period. There is pain everywhere, muscles and joints. My back, neck and shoulders are always the worst, with the perpetual headache too, as well as the congestion and cold symptoms. All topped off with the mental capacity of a wet sponge. That’s the quick overview. At my worst I was eight and a half months bed ridden. I do everything in my power to avoid being in that situation ever again.
So, I’ve been thinking about how I actually manage the condition.
Since my diagnosis many moons ago I’ve built up the energy and capacity that I have today, through pushing myself to the point of exhaustion, relapsing, then recovering and repeat. It was hard, and certainly no walk in the park. But over the long term, it has got me to the point where I work full time and have some semblance of a social life. However, when flares start to show their appearance, I reduce everything where I can except work. That will look like early bedtimes, as late a sleep in as possible in the morning, not seeing anyone or doing anything else except for work. In reducing everything to that, I’m usually able to mitigate the flare. I don’t like it, but it seems to work for the most part.
When I’m adjusting my routine, for example adding something new into my day to day, like morning exercise, I need to balance the new energy usage by removing something else in my day to minimise the impact of the new part of the routine. I’m constantly managing this. Mostly it works. Until it doesn’t.
I’ve been looking into other ways to help support me further, and a theory that has been developed to help explain energy usage is the ‘spoon theory’ . The spoon is the limited measurement of energy available to a person with a chronic condition, with a healthy person having unlimited spoons available, but someone like my fine self, will have a set limited amount of spoons each day. The number of spoons will vary dependent on the level of health I’m experiencing, but they will always be limited.
With this flare, I’ve been hitting about 5 spoons a day. It looks like this; get up – 1 spoon, watch TV – 1 spoon, make and eat a meal – 3 spoons. Total 5 spoons. Thankfully I’m now a week through the flare and it’s subsiding.
However, this is what I find a struggle to explain to people, is the sacrifices that need to be made to allow me to work full time. The spoon theory will forever be my go-to know, to explain it to those who have unlimited spoons!
Thinking about your energy levels, how many spoons do you think is your base rate?
Do you feel rested after a goodnight’s sleep?
Have you ever felt you’re functioning at 100% energy?
Let me know in the comments!
I think that will do it for now with today’s ramble. Actually, I’ve written this over five days. Usually, I can write a blog in an hour tops, but with the flare, and the mental and cognitive dysfunction that come with it, I’m just glad I’ve made it to the end of this one.
Sending love to everyone.
This has been a SmartPonders.
Thanks for reading!
Steph x
SmartPonders 
