Why is pacing so gosh darn difficult?

If you didn’t know, pacing is the single, most important way of managing your symptoms when you have a chronic illness like Myalgic Encephalomyelitis. 

It involves spreading high-energy activities over a long period of time, to stop your body over-exerting and inducing those horrible, energy limiting symptoms. ‘High energy’ is defined differently from person to person, depending on the severity of their condition. For me it is anything that involves standing up, but for someone with a more severe condition this could be as small as processing daylight. 

It takes a lot of planning, and a lot of practice, to be really efficient at it. However I do know people with Long Covid who have actually managed to lessen their symptoms and improve their baseline with consistent pacing – so it is effective when done right. 

I know all of this, and yet it is still something I really struggle to do. So I thought I’d share my thoughts on why that might be, in case anyone out there is also really struggling with pacing – the most important tool for someone with a chronic illness. 

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I don’t want to pace myself

Now bear with me here, because I know this sounds stupid. Why wouldn’t I want to do something that could help me? 

The fact of the matter is that I want to be able to do all the things a normal person does. I want to be creative, and social, and work, and look after myself and my husband, walk our dog, and be present. I want to be normal. 

It’s so hard to accept the limitations that come with chronic illness, so much so that nearly 10 years on I still find it difficult to commit to the way of life I should be living. Whenever I do have the energy, instead of conserving it the way I should and pacing myself, I am trying to fit in as much as I can, while I can, to make myself feel like a regular human being. 

I’m trying to live up to impossible standards, that I do not need to set for myself, all in the name of being something I’m not. 

Pacing is inconvenient

Let’s face it, needing to take longer to complete tasks, or to take regular rest breaks, is just inconvenient. Not just to me, to everyone around me. 

I don’t have the energy to shop, or cook, to go out with friends or attend important events. Cancelling plans and having to do things in halves is all part of pacing and listening to your body, but it is a bit of nuisance to be honest. 

I am usually pretty good now at breaking anything big down into chunks. I know that I am not physically able to do things all in one go and end up either causing myself a lot of harm or leaving a worse mess than when I started (which I then have to wait until I have enough energy to deal with). I’m also usually good at not planning too much into a short space of time, making sure to plan in rest days so I can be at my best. 

But these are not always possible, and it’s not easy to halt everything just to be able to rest because you need it. So, to not be an inconvenience, I curb pacing and push through, always paying for it later.

Pacing is a bit boring actually

I know I don’t need to tell you how boring it is when you have a prolonged illness and all you can do is sleep, and just be in bed, maybe watch TV, or scroll through Instagram. After a couple of days though, it can start to get to you. 

Well imagine that, but with no end in sight. And this is coming from someone who loves their bed – it’s my favourite place in the whole world. Even I get sick of it sometimes. 

I do my best to make it fun. I own a bazillion pairs of really comfy pajamas. I put on my favourite shows or interesting/funny podcasts. I listen to audio books. I have sleep headphones so I can block out the light and still listen to my favourite things (especially good for light sensitive migraines). I have water bottles that I love, suitable for drinking while lying down. I have cosy blankets. You name it, I have it.

But that doesn’t mean I want to spend 24/7 in my bed, just to be able to function. 

I just want to post an aside here, because there are many people out there who are fully bedbound because of the severity of their ME. I am very fortunate that I have a choice here, and even though it comes with consequences I can get up and do things without getting the same level of negative symptoms – so please don’t think my experience is typical of someone with this illness. 

There are always things that need to be done.

Unfortunately, there are always things in your day that have to be done.

When I’m in an energy crash I am pretty good at prioritising what can be left and what can be done, but things like going to the toilet and feeding myself are pretty damn important. These things (for me personally) cannot be done lying horizontally in bed. 

No matter how bad your energy levels are, there are always essentials that you have to sacrifice your precious spoons for.

To do it well, I would need to work less

Now this one is very personal to me, as work to me has always been really important. 

I struggled for most of my twenties to be able to consistently work, and find a job that wasn’t too much for my anxiety. I needed that purpose, and that structure, because not working actually made my life worse. It caused my depression and anxiety to become more severe, and I felt so isolated.

After all I went through, to finally find a job that I absolutely love, in a company that feels like a family. To do something I actually think I am good at. I am not ready to let that go. I don’t think I ever will be.

However, I do know that to be able to make any difference in my energy levels, I probably need to either give up work or work significantly fewer hours. I have been able to reduce down to a four day work week – and that has been immensely helpful. It’s definitely not enough though, realistically. 

So, until I am ready to take that step, I don’t think I will ever be able to pace properly. And my health will always suffer for it. 

What do you think of pacing? What has been your experience of it? Do you struggle for the same reasons as me, or would you add to this list? Maybe you find pacing less difficult than me – feel free to share your experience in the comments!