Chronic illness and the need to pace yourself

Do you know why you need to pace yourself

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

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:

• anxiety and depression
• when I’m sleep deprived I see and hear things that other people can’t
• suicidal thoughts
• psychomotor retardation which feels as if a dial has been turned to put you on slow speed. It varies in scope and severity and can affect movement, speech, reaction time, and thought process.

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

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

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

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

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

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