Chronic illness and the need to pace yourself

Do you know why you need to pace yourself

How to slow down and get off the wheel
How to slow down and get off the wheel — Image by Pixabay

Do you know why you need to pace yourself if you have a chronic illness? The truth is, if you don’t, you’ll eventually crash and burn!

Chronic illness is pretty far-reaching in its effects, touching every aspect of our lives. It affects whether or not we can work, our mental state, our relationships and friendships, our income, our hopes and wishes, together with our sense of self.

Even after having a chronic illness for 10 years, I’ve only just realised today that I need to pace myself. I’ve pushed myself too hard too often and it’s having an adverse effect both physically and mentally.

I feel like I’m perpetually on a hamster wheel, going round and round but not getting any one thing done — completely. Or I feel like I’m juggling twenty balls all at once. And at some point, they’ll all just hit the floor.

Ergo, I do nothing! So here’s the rub ……. I swing from doing a million things at once to doing nothing, nada, zilch!

Physical disability can slow you down

How to slow down when you need to get things done
How to slow down when you need to get things done

I have Transverse Myelitis (TM), a physical disability with too many symptoms to talk about all at once, let’s just say that apart from

  • Inflammatory Pain: An abnormal inflammation caused by an inappropriate response by the body’s immune system…..
  • Neuropathic Pain: Pain caused by nerve irritation. …
  • Functional Pain: Pain without obvious origin, but can cause pain……. i.e. arthritis …………

I’m also prone to chronic fatigue and doing any task for more than ten minutes can knock me out. The following symptoms also occur:

  • I start to perspire (ladies don’t sweat) profusely
  • my pulse races
  • my vision is impaired, it’s like a fog
  • the blood rushes from my head, my lips, hands and feet go white
  • I can’t catch my breath and it feels like I’m having a panic attack — but I’m not panicking. These are just some of the symptoms I get with TM.

Mental illness can slow you down

At times I also experience:

Sleep deprivation can lead to hallucinations
Sleep deprivation can lead to hallucinations — Photo by pexels.com

It’s definitely true for me that some days are worse than others, and I’ve had to learn to manage it all; be aware of triggers and symptoms.

It isn’t always easy, and I’m not sure if people who’ve never had a mental illness know how hard it is to maintain the equilibrium.

Where we might be going wrong

The need to pace yourself if you have a chronic illness  ---
The need to pace yourself if you have a chronic illness — Freepik image

If you’re anything like me you still think like an able-bodied person, or you still feel like your only 40 when in reality you’re nearing 60. Your day might go something like mine:

  • in the kitchen, making cake pops for our grandchildren……doing dishes and need to put wet dishcloths in the washing basket in the bathroom……..
  • wipe hubby’s toothpaste from the mirror……….pick up the wet towel, now perspiring, go to the hall cupboard to get more toilet rolls because no one else ever replaces them ……..
  • Breathe….. rinse a clean flannel under the cold tap and wrap around neck to cool down…….. see the soap dish needs cleaning, the shower cubicle……. oh, so do the taps………… slump to the bathroom floor for 10 minutes.
  • On the way back to the kitchen note the duvet needs plumped up and the bedroom window needs opening……… In my haste, I’ve trodden on the shoes hubby leaves lying around. I lose my balance, bash my face on a door frame. It will bruise. Need to lie down….. on the already plumped up duvet.
  • While resting I remember I need to ……. I can’t breathe…….
  • Next, I walk towards……………… swoon……….come round on the floor, the sofa, or the bed…….. and hubby’s tugging at me……. he thinks I’m dead!

All this rushing around, pretending I’m fit and can still do everything at breakneck speed, has lead to many accidents.

I’ve got massive bumps, bruises, blisters and scars from dropping boiling hot coffee all over my lap and nether regions (Oh the shame at the hospital). Or from (unwittingly) kneeling in oven cleaning liquid, and constantly bashing myself as I race to get a million things done………

Chronic illness and the Spoon theory

Spoon Theory and mental illness
Spoon Theory and chronic illness — Tumblr image

You might have heard of the Spoon Theory by Christine Miserandino. She came up with this when one of her friends asked her what it really felt like to be sick.

It’s a helpful analogy of what it’s truly like to live with chronic illness or disability. The theory:

  • effectively explains to others how your energy levels are limited when you have a chronic illness – using spoons!
  • originally came about for physical illness but it also translates well to mental health and can be adapted accordingly.
  • describes the energy needed each day, and the pain everyday tasks cause for someone with a chronic illness.
  • explains that while it might not be physically evident that someone you love is struggling with anxiety, depression, or stress, their body and their energy levels are being severely impacted. We need much more energy to i.e. attend to our hygiene needs than someone who doesn’t have a chronic illness.
  • started out with 10 spoons; each one equating to a unit of energy.

It might take a healthy person just 1 spoon to get up and ready for work, leaving 9 spoons (units of energy) to use throughout their day. But for someone like me, it took 1 spoon each to get out of bed, 1 to shower, 1 for my teeth, another to get dry and one to get dressed……. I’ve used all of my 10 spoons, I’m out of energy! And I haven’t even got out of the front door yet!

Pace yourself if you have a chronic illness – the theory

Push-crash cycle

Having a chronic illness can often feel like we’re living on a roller coaster. We swing between intense symptoms and rest, in a frustrating cycle of push and crash.

I believe the Push-crash cycle originates from the founder of the Chronic Fatigue Syndrome (CFS) Self Help forum. However, I think it’s helpful to use for any Chronic illness. And rather than reinvent the wheel, I’ll use excerpts of his to explain the cycle:

“People who use this way of living with a chronic condition find themselves caught in a frustrating loop, swinging between overactivity and forced rest.

When their symptoms are low, they push to get as much done as they can, the overexertion triggers an increase in symptoms, which in turn leads to forced rest or a crash.

Resting is usually successful in reducing symptoms, but then, feeling frustrated at all they didn’t accomplish while resting, they plunge into another round of overactivity to catch up.”

Bruce Campbell, PhD, creator and Executive Director of the ME/CFS and Fibromyalgia Self-Help Program

So basically, when you find yourself feeling overwhelmed, frazzled or that you’re racing from one thing to another, learning how to slow down is maybe just what you need.

Understanding how we can pace ourselves

How to pace yourself — Image by Pixabay

We know that marathon runners don’t run as hard as they can the whole way. They set a steady mile-eating pace early on, saving their energy reserves for the end of the race. You can do the same — as long as you take regular breaks. 

We’ll discover what we can do to pace ourselves in my next post 🙂

“When you intentionally slow down your days and your life, it helps you become more present and mindful in your days. And even better, when you’re not struggling just to keep up, life can be a lot more enjoyable!”

Melissa at Simple Lionheart Life

Over to you

Image from Clipart

Do you find yourself overwhelmed, exhausted, or wornout by your daily activities, whether it’s at work or at home, with or without a chronic illness? Are you finding it difficult to pace yourself, or do you even know how to? If you do, you might have some tips for the rest of us?

I look forward to reading your comments and I’m happy to answer in questions. In the meantime, take five minutes out…………. and breathe.

Caz

Author: mentalhealth360.uk

Mum to two amazing sons. Following recovery from a lengthy psychotic episode, depression, anxiety and anorexia, I decided to train as a Mental Health Nurse and worked successfully in various settings before becoming a Ward Manager. I am a Mental Health First Aid Instructor and a Mental Health Awareness Trainer, Mental Health First Aid Youth and Mental Health Armed Forces Instructor. Just started my mental health from the other side blog.

15 thoughts on “Chronic illness and the need to pace yourself”

  1. Organization and self-compassion help me get by. Organization keeps me from feeling like I have to do everything at once, and helps me spread out tasks. Self-compassion shows up in recognizing that my mind and body have their limits due to illness, and when I try to push it only makes things worse.

    1. Yes, I think I need more organisation! I started a list today and have done a few bits. And my son would agree with you, showing some self-compsssion 🙂 Great tips there Ashley.

  2. It helps me to have compassion based on genuine relating, (good side vs the side that’s always complaining), this post is a window of truth about chronic illness. Until you experience it, it’s non-existent. I’m glad you re choosing to slow down and pace, marathon is a good metaphor. I’m going to try to pause too, stress triggers eczema in me, the photo of the woman’s back is what my legs looked like a few weeks ago. It’s scary when my body feels out of control.

    1. Yes, someone else mentioned self-compassion and my son tells me to have some 🙂 Ouch, eczema must be sore and irritatingly itchy 🙁 Did you get that fixed in your legs? And I agree that it’s scary when you don’t feel in control of your own body Judy x

      1. The eczema has calmed down but is still present, the worst part is probably not eating what I want to but I’m glad it’s not oozing anymore, I was bandaged like a mummy on my legs. When I see people like amputees and burn survivors on YouTube I feel silly to fuss over having eczema when I see their resilience.

      2. Ouch, you poor thing 🙁 And nope, don’t you feel silly Judy – everyone has their own illness and how yours impacts on your life is important. You need support just as much as anyone my lovely x

  3. Slowing down really helps. For me it’s still hard to accept that this is what needs to be done. I, too, love to think I’m still Superwoman and can do it all. Lately I’ve been ready to go back to bed by 9:30 am. Getting the kids ready and out the door is about all I can handle.
    Stay well Caz 🙂

    1. It is hard! Superwoman 😉 Oh I remember that when the boys were small Angie — I loved it cos I got them to school for 8.45 and didn’t start work til 10 so I managed to get home and have an hour to myself. I actually preferred that time back then, cos at least I wasn’t unwell 🙁

  4. I don’t have a chronic illness, but I know people who have and this makes a lot of sense. Thanks for sharing 😊

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