One of the things most people don’t understand about M.E is how tiring and exhausting simple things can be. It’s not just the physical activities, it’s the mental as well. It’s not just activity but simple daily tasks that completely exhaust me.
People don’t realise how every action uses energy and when that energy is in short supply, you have to ration it and pick which daily tasks can be missed out and done another day. To illustrate, here is a list of all the daily tasks which make my fatigue worse:
- Making breakfast
- Getting dressed
- Brushing my hair and teeth
- Climbing the stairs
- Reading
- Staring at a screen
- Cleaning the cat litter box
- Putting makeup on
- Socialising
- Making conversation
- Having a shower
- Preparing a meal
- Washing dishes
- Hoovering
- Taking the rubbish out
- Changing the bed sheets
- Writing
- Unpacking shopping
- Putting the washing out to dry
On a daily basis, I have the energy to complete about 4 of these tasks, some days I can only complete 2. When faced with that reality; I hope people understand why I’ve spent an entire day in my pyjamas, why I’ve not eaten lunch, why my bedroom is a mess, why I’ve turned down an offer to go out and socialise, why my hair is constantly tied up and why phone calls go unanswered because I just can’t face going down the stairs to the landline.
It’s a struggle to balance daily jobs and daily self care; it’s embarrassing and brings a feeing of shame because I can’t handle what the majority of people do without thinking. But it’s also why I’m extremely thankful when my Dad hoovers my room, when my Mum pre-makes my lunch, when my shopping gets unpacked for me, when someone offers to brush my hair after a shower and why having a strong support system is important with this illness. Those simple offers of help mean I’ve saved the energy needed to do that task so I can do something I want to do. Some people probably think I’m a failure because I still live with my family and because I need that extra support and help to manage. Sometimes I feel like a failure and a burden because of my illness but I don’t choose to be this way, I’m not just lying around because I can’t be bothered, I’m not avoiding tasks because I’m lazy. I wish more people understood this.