This blog to offer some guidance on how you can begin to manage your level of fatigue. With so many unknowns around Long-Covid as well as so much uncertainty when treating ME/CFS, I felt it may helpful to share my experience with you.
I developed ME/CFS in 2011 following relentless viral infections over a short period of time. It has been tough. I have felt so many different emotions over the years. Having ME/CFS has made me feel angry, frustrated & isolated. It has made me feel like I’m a fraud. And it has also made me feel some grief for life before I became unwell.
Acceptance was really hard for me, because I didn’t want to feel like I was giving up. I was Mum to two young boys. And I had a busy job / social life and I was fit & relatively healthy. I went from this to feeling like I had constant flu. Pain and fatigue arrived and just never left!
How can I learn to live with chronic exhaustion?
Accept what it is for now. This doesn’t mean you have to give up, or that you will always be defined by your diagnosis. But accepting it can help you to feel less guilt for not being able to do some things, or be as involved with friends or family. Increased levels of stress will drain you like a car battery when the lights and stereo have been left on. You know how tired you feel if you’ve felt upset and had a good cry? When we are worried or upset or angry for long periods, our bodies become as tired as our minds.
Don’t fight it
I really fought against my diagnosis for many years because I didn’t want to accept it. I couldn’t face the possibility that this was it. So I pushed and pushed. But then came the crashes. If I’d taken the time out in the beginning then I may have recovered a lot more. However, going from healthy to chronically unhealthy so suddenly meant that I just assumed my body would just sort itself out. The thought of having weeks or months off work seemed completely alien! I had responsibilities & commitments to my students. I felt SO much guilt. Thankfully I had a great boss who was supportive. But none of us knew what was happening. We all just assumed I’d get better & be back to work – job done. With the stigma around ME/CFS / Fibromyalgia, I really felt ashamed to have the label. And stopping felt like the opposite of what I should do.
3 Ways to Cope with Chronic exhaustion
- Listen to your body. I cannot emphasise this enough. Push those feelings of guilt to one side. If you need to rest – then just rest. This can be tough with a young family. Take a look at your day. Can anything give? Do you work? Or can you take holiday? Are you able to reduce hours? Could a friend or relative help with homelife or children? By giving yourself the space to rest when you need to, your body will be able to recover from the ‘crash’ quicker. The more we push through, the more we put strain upon our bodies which can lead to longer & more severe crashes.
- Self Care. Some people find taking time for themselves difficult. Self-care is really important though. Whether this is a soak in the bath, reading a book, having a sofa day or going for a gentle walk. If you can support your mental wellbeing, it will ease the energy that you use as you are less stressed. Reach out to someone. Chronic health conditions can make you feel very isolated. Speak with a friend or a counsellor if it will help.
- Diet & Exercise. We all know that eating well is good for us. But when we’re exhausted it can be too difficult to prepare healthy meals or eat regularly. When you’re feeling more energised make enough for an extra couple of meals to freeze & reheat. I find that my body reacts pretty quickly when I’ve eaten too much processed foods. My energy levels dip hugely. When it comes to exercising everyone is different. For some, walking around the house is barely manageable, for others, there may be days when they can go for a walk. Take time to notice your body & decide what you’re able to do. I always plan ahead. This is because if I have a meeting or some work to do I won’t exercise as I know it would be too much in the same day. Although, I may be able to do some housework or some gardening instead.
Lynsey, December 2020
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Further information on living with ME, can be found at the ME Association website. https://meassociation.org.uk/