A day in the life of someone with chronic fatigue syndrome
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This is a glimpse into a typical day in my life a year ago when I was suffering from chronic fatigue syndrome (CFS), multiple chemical sensitivity (MCS) and extreme food sensitivities. Of course every day was a bit different – some days I felt a bit better, some days I felt a bit worse – but this was a typical day at the time.
06:30 – 07:30 hrs: I hear Dermot getting out of bed and starting to get ready but I literally can’t lift my head off the pillow.
Eventually he comes to check if I need anything and tells me bye.
I wish I could get up and hug him, leave home with him or at least wave him off as I once used to. But instead all I can manage is a very meek bye.
07:30 – 10:00 hrs: I fall asleep again, waking up every so often, wishing I had the energy to get out of bed but not managing.
10:00 – 10:15 hrs: My phone’s ringing but it’s a huge effort just to move my arm to press the reply button. It’s Mama calling to see how I am and to see if I need her to buy me anything. I barely have the energy to answer her and mumble a reply.
She asks if I want to say hi to Papa quickly, but I tell her I don’t have the energy to. I think back to the long, cheery conversations we used to have every day and it makes me sad that now I don’t even have the energy to say hi to Papa.
11:00 – 12:00 hrs: I finally muster up the energy to get out of bed. I’m quite hungry but the walk to the kitchen feels like a marathon.
I'm so tired by the time I get there that I eat something small and then lie down on the sofa to rest. I wish I could do some housework before Mama arrives. But today that’s just not possible.
12:00 – 13:00 hrs: Mama arrives and as always since the MCS became bad, we don’t hug.
She heads straight to the kitchen to start putting things in place. Seeing her doing all the things I wished I could do while I was lying on the sofa but couldn’t upsets me and I end up snapping at her, telling her she doesn’t have to sprint to do all my housework.
I feel terrible for snapping but sometimes having to depend on others to get things done makes me feel really helpless. But Mama is as understanding as ever.
She asks if I feel like going for a walk. Frankly it’s the last thing I feel like but she reminds me how much the fresh air helps me. I put my mask on and we head out.
We walk for about 5 minutes at a really slow pace because I just don’t have the energy to walk any faster. Eventually I tell Mama I don’t have the energy to walk so we sit on a bench instead. At least the sea air lifts my mood and by the end we’re chatting and laughing and I’m no longer snapping at her.
13:00 – 14:00 hrs: We get back home and I’m feeling a bit better after getting some fresh air. Mama does some more housework for me while I start preparing my coconut bread – happy to have recently reintroduced coconut flour into my diet. Though I find it tiring, cooking is a bit of an escape for me and I love experimenting with different recipes since the only things I eat apart from fruit and veg are things I prepare myself.
14:00 – 16:00 hrs: Mama leaves and I switch my laptop on to try getting some work done. The brain fog is extremely intense today so it’s really difficult for me to focus but I do my best to at least tackle the most urgent emails.
16:00 – 17:00 hrs: The organic fruit we ordered is delivered and although I wear my mask when the delivery person arrives, I can feel myself reacting to his perfume even while he’s here.
I start shaking and feeling as though I can’t breathe properly. I lie down on the sofa and more or less pass out.
17:00 – 18:00 hrs: Dermot gets home from work and I’m still on the sofa. He realises I’m not well and asks me what happened, but I’ve literally lost my ability to speak. I can hear him calling me and I wish to answer him but just can’t so I try making a sign with my finger but can barely move my hand either.
18:00 – 20:00 hrs: I keep resting and Dermot prepares our supper because I can’t get up off the sofa. Walking from the sofa to the table is challenging but at least my food tolerance has improved to the point that I’m confident I won’t throw up after eating.
20:00 – 23:00 hrs: Dermot and I sort some things out and watch TV together, then Dermot heads to bed. I lie down on the inflatable mattress we placed near our bed since I figured out I was reacting to the fire retardant chemicals in our mattress but I know it will be a long time before sleep comes – insomnia is another of my symptoms. But at least I lie there near Dermot till he falls asleep.
23:00 – 03:00 hrs: As I thought, there’s no way I can drift off to sleep. I figure it’s pointless trying to fight it so I browse through some websites about MCS.
Eventually I lie down in bed and listen to some relaxing music, but it still takes time for me to fall asleep. I wish I could go back to sleeping at a decent time and waking up at a decent time and that Dermot’s and my lives could get back in sync.
But right now it just doesn’t feel possible. I’m never tired at night but always exhausted during the day: a horrible cycle of insomnia and chronic fatigue which it turns out is quite common among chronic fatigue sufferers.
06:30 – 07:30 hrs: After less than 4 hours of sleep, I hear Dermot getting out of bed again and another difficult day begins. Like the day before, it will be a long time before I manage to get out of bed, but the battle within my brain begins.
6 months before the start of my illness
Photo by Rebekah Kamsky Photography
“Please Jo wake up.” “Please find some energy to get some work done and do the things you used to enjoy doing before.” “Please get up and hug Dermot.” But it isn’t to be...
...And my days went on in much the same way until I discovered neural retraining. Despite my initial scepticism, the day after I finished watching the DNRS DVDs I managed to interrupt this horrible cycle of insomnia and chronic fatigue.
And now, 9 months after starting DNRS, I have my life back in more ways than I ever thought possible.
So if you could relate to any part of what I wrote above or if you know someone who can, please give DNRS a try. It could give you the life you once loved back.
You can read more about how I recovered through DNRS here or feel free to contact me. You can also subscribe to receive updates at the top of the page.
Taking part in a 5 km race 6 months after starting DNRS
PHOTO BY BIRKIRKARA ST. JOSEPH SPORTS CLUB/MULTISPORT