ovarian cancer

living with fatigue

I’ve tried and failed to explain life with fatigue but this week someone explained it to me perfectely and I had to share it.

They just ‘got it’.

First let’s get one thing out of the way…fatigue and tiredness are not the same thing. Not even close. You don’t know what fatigue is like until you’ve experienced it. I don’t care how many kids you have, how many late nights you’ve had, how hungover you are, what your work pattern is (insert anything else here) you just don’t! Yeah I thought I knew what it was before too…turns out I was wrong…

Ok so now my little rant is over let me share the explanation…

Fatigue is like waking up each day with 4 cups of energy whilst everyone else has 20. You can choose how you spend each cup. You might choose to use two on seeing a friend, one on yoga and one on cooking dinner. The rest of the time would be spent lying down. So each day is about making a decision on where to spend your cups. Also keep in mind that obviously sometimes you have to spend cups on doing housework, paperwork, food shopping and other necessities…

BUT you can’t spend 5 cups one day and expect it to be ok because you’ll just have 3 the next day. That is how tiredness works. That is NOT how fatigue works. With fatigue if you spend 5 cups instead of 4 then it will cost you ALL of the cups for the next COUPLE of days. In my case this means sickness, sleeping, an inability to think and function clearly…

So if I don’t answer the phone, change our plans last minute, have to rest, can’t spend as much time with you etc etc then it’s just part of my life with a long term medical condition and that has to be ok.

Personally I choose to spend my cups on yoga and writing because I am extremely passionate about them and I want to make a difference for others. The days I don’t do either of these I feel lost and alone. They make my heart sing! If cancer has taught me anything it’s to do what matters to you with the time you have.

I carefully plan when I use cups on social activities. Don’t get me wrong,  I would LOVE to have the same ability to socialise like I did before but it just isn’t the case. I think people think I do lots of social activities each week but in reality I actually restrict my time to seeing two friends each week because I’ve learnt that anything else leads to cancellations which I know hurts people’s feelings. Especially if they haven’t seen me for a while.

In amongst all of this I also need to find the energy to spend time with my husband -sleeping with my head on his shoulder while he watches TV doesn’t count! – and with my incredible family.

When you start to add all these things together you soon see that the cups of energy don’t spread far. Especially when, in the analogy, a ‘normal’ person has about 20 cups each day and can ‘borrow’ from other days.

Fatigue is a really disabling condition and it’s also emotionally challenging because sometimes people, as hard as you might try to explain, just don’t get it.

So, if you are going through your own journey with fatigue, know that you are not alone. I get it and maybe one day others will too.

Love and light, Fi xxx

4 thoughts on “living with fatigue”

  1. Fi, you have explained that so well. I have suffered for years but this last year has been just awful. I feel that people just think I’m being lazy. I hurt all over and the pain is there constantly. My Hubby asked how my pain was yesterday after a particularly bad night – I said 9 out of 10 is normal but during the night 20 put of 10 is what I’d describe.

    Fi, I wish I had a friend like you. Keep writing and when you’re able to have a snuggle with your cat 🐱 😊 My Sasha is a great friend and comfort to me.

    Sharon xxxx

  2. Beautifully explained Fi. I’m fortunate that I’ve perhaps got a dozen cups now. But I wholeheartedly agree with your comments regarding balance and choices.

    Never in a million years could I have imagined the train hitting you that is fatigue.

    I treasure my energy and use it on stuff that’s very special.

    Enjoy your writing – you’ve got the gift of telling the whole story.


  3. You described fatigue so well. It’s hard for people to understand and there are so many varieties of experience. I’ve had fatigue for years now from fibromyalgia and endometriosis. In the last 6 months since having my ovaries out, the hormonal changes have brought insomnia into my life as well. Now, instead of my normal fatigue I have exhaustion from night after night of 4-5 hrs sleep. I’m working on that with my doc, but it’s been tough. I’m awake now at 1 am… I sure admire how you’ve handled your illness and appreciate your sharing. Wishing you some lovely, recharging rest!

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