This weekend just gone we had family visiting on the Sunday, and after a lovely Sunday lunch I then went upstairs to take my rest. And yes I was feeling tired after the cooking but, this afternoon rest is a daily occurrence and is part of my daily pacing routine.
And whilst it is beneficial, it’s also the worst thing ever.
Because I have to miss most of the afternoon EVERY DAY, and for the foreseeable future. It’s pants, to coin a phrase. And in the spring and summer when we have glorious sunny afternoons, I really do feel that I’m missing out on life.
So why do I do it?
Pacing is different for everyone, and is a great way to manage energy levels, which are very precious to people who live with ME.
There are many theories on energy management, but they all have a common theme, how to manage a finite amount of energy and ensure it gets spent efficiently.
I often describe it as having a partly charged mobile phone battery, and you have to make it last. Something we can all relate to!
In ME sleeping does not mean that my “battery” gets fully charged. I wake up with only the partial charge.
Every activity uses up energy, so each day has to be carefully planned out to ensure that I don’t drain the battery completely flat. And that’s where the afternoon rest comes in to do a little top up.
Other theories include The Spoon Theory, The Energy Envelope and Energy Conservation. You find what works best and what you and your family understand.
I am currently trying a free online App tool from VISIBLE, it measures heart rate variations against specific symptoms and gives a score each morning to help plan and pace the day. Having been pacing by myself for 8 years now I am quite intrigued to see how this app result correlates to how I feel each day.
Part of learning how to pace is learning what activities and actions use the most energy, as well as noting what is off the list of allowed activities.
Activity that induces severe post exertional malaise (PEM) is best avoided at all costs, and this will also depend upon the severity of your ME.
For someone with moderate to mild ME walking 200 meters at a gentle pace might be possible. For someone with severe ME it would be totally impossible, they might only just make it from the bed to the sofa.
And then because of the fluctuating nature of ME , the mildly affected person, having done the walk yesterday might not be able to walk so far today, if at all.
It would take me many paragraphs to really describe the nature of PEM and activity in ME. It is certainly complex.
The other thing that the person living with ME has to learn is that EVERY SINGLE ACTIVITY uses energy, from watching TV or reading a book to driving the car or walking the dog.
I took a long time to really learn that sitting down with a cuppa, TV on and iPad in hand for a rest, was anything but!!
Yes I might be physically resting by sitting down, but I was still using my energy by watching TV, and by doing something as innocuous as reading my emails.
Psychological activity can sometimes even be more energy draining than the physical activity. For example watching a disaster unfold on the news, or reading something distressing in an email such as news or a death or other serious event.
Everything has to be considered and taken into account. Which is why an afternoon rest, physically lying on the bed in silence (and often actually sleeping) is beneficial.
The more one practices pacing the better it gets, and you work out what helps your body.
The other good thing about pacing is that it can be flexible. For example if there is a busy day coming up, quieter days can be planned either side in order to help mitigate the PEM and maintain the equilibrium.
It’s also important to be flexible, because sometimes life doesn’t go to plan. For example an appointment might overrun or be late starting. You can find something takes more energy than you thought, or you make a decision to stay longer than planned because you know that you can rest more tomorrow.
Having such flexibility means that normal life doesn’t necessarily pass you by. And this is how I have found the aforementioned afternoon nap works for me. I prefer to do something that takes more energy in the morning, for example an appointment, meeting a friend for coffee or visiting a shop. My car and my blue badge means that I can park closer to where I am going and save energy that would be spent walking from the car to where I want to go.
When I was first diagnosed with ME I missed out on a lot of things, because I would do too much and then crash, often spending days bed bound and house bound. I felt that I would never travel again to visit family and friends or take a holiday.
Now, using pacing I have learned to understand my body and how ME affects it, and so I can plan to do something that involves travel.
I must add here that I still get things wrong and the pacing journey is not smooth. Dealing with the unexpected is still the biggest challenge, from getting bad news or a normal health issue such as a cold or sprained ankle can upset the best laid plans. At these times I have learned to go with the flow and listen to my body.
Payback of PEM usually occurs for me 24/48 hours after the event.
It’s never an exact science but having understanding family and friends really helps.
Obviously there is a lot more to pacing than described here, but I hope that it gives you a sense of how I live my life with ME.
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