I used to be healthy (ish!) Full of energy. I used to think nothing of working a 10+ hour day, 5 days a week, going to a 2-hour rehearsal twice a week after work, and most other nights going for a drink or 2 at the local. Weekends were spent socialising, walking; energy was seemingly unlimited. If it wasn’t, a good lie in and rest for the day sorted me right out and I was back, the normal me firing on all cylinders.
I fell pregnant and we had our first child in 2017. I know what you’re thinking, having a child, becoming a mummy is exhausting. Of course it is. But bear with me. We quickly got used to navigating the sleepless nights, cluster feeding, dirty nappies leaking up the back, you know what it’s like. I’d be walking into town and back at least every other day, 1.5 miles each way. A class of buggy fit here, baby sensory there, nothing seemed out of reach.
The idea of not being able to get through a day without at least a nap or 2 was lost on me. Naps were what we were planning for our daughter, not me. The idea of lying down during the day was a luxury. People telling me to “nap when the baby naps” during our daughter’s early months, pah! My response: so I need to clean when the baby cleans, wash when the baby washes? How naïve was I! Never did I think I’d take for granted the unlimited energy from day to day and the ability to just have a good night’s sleep and feel rested, revitalised, ready for a new day.
This was all pre-ME CFS life. Now, life is a completely different story.
Today’s day to day existence is not just “being tired”. It is a level of sheer exhaustion and pain never experienced before. It’s a combination of having the flu constantly, running a marathon daily(with the flu) then being beaten up. Every day. Oh and going on an all-night bender, with the inevitable hangover the next day. My muscles hurt on a daily basis like they did at mile 17 of the London Marathon, that “hitting the wall” thing. Except all I’ve done is get out of bed and walked 3 metres to our daughter’s room.
On my really bad days, generally when I’ve either overdone it or have an infection, I feel physically sick, can’t see properly (and yes I’ve had my eyes tested and they’re fine) and forget trying to stand up unaided. Noises become too much. The noise of people talking, dishes being unpacked from a dishwasher, they all hurt to the point where my brain feels it’s about to explode. The pain is on another level never experienced before. Standing unaided is simply not possible. It doesn’t take an awful lot of imagination to work out that getting out of the house and/or taking care of a toddler becomes incredibly difficult in these situations. I have had to become dependent on my darling husband, and my incredibly generous family and friends who have offered their valuable time to help me.
Learning to live with ME CFS is hard work. No longer can I just do whatever it is I fancy. Everything has to be planned out, but in the knowledge that I could crash at any point. Only very small amounts of energy are available each day and even then only very small amounts can be expended at once. Everything you’ve ever learnt about fighting acute illness before, forget it. Rest and sleep does not clear this condition.
Through this blog I’ll attempt to explain what it’s like living with ME CFS: getting diagnosed, coming to terms with a condition misunderstood by many, learning about one’s limits (the spoon theory), and most importantly, the small moments of joy that get one through each day. I’ll try to highlight the tips and tricks I use to get me through the ups and downs. I’ll aim to raise awareness of this debilitating condition but also give you hope that it isn’t all doom and gloom. As a lady recently said to me: accept the diagnosis, not the prognosis.
Comment down below for what you’d particularly like to know or find out and don’t forget to subscribe to receive each new post directly to your inbox.
Like this article and want to make sure you receive my next posts direct to your inbox? Fill in your email address below to join my email list: