Pacing and priorities: managing energy impairment

A person is seated. A wheelchair headrest is visible behind them. The image is dark, but their hair is a bright blue. Their t-shirt is blace, and says "PISS ON PITY" in bright pink. They are wearing a microphone and glasses.
Me performing my poetry on stage, copyright Absolut Queer Photography

A friend recently asked me how I manage to not use social media excessively and balance energy requirements to achieve things I want to. In writing up my answer, I thought it might be useful for people other than them, so it became a blog.

I deal with quite significant energy limitations. While they’re better than they used to be (after a treatment was found for my adrenal issues) I’m still very restricted. Despite the improvement in my adrenal problems, I’ve been facing increased worsening of my condition in other areas, and I’ve had to work out how to balance my goals. To work this out, I asked myself

“what kind of a person do you want to be?”
“what do you want to be doing?”

That was a difficult pair of questions, because a lot of what I wanted to be and do was impacted on by my impairments, and I couldn’t see a way of having it all. However, asking myself those questions did let me see where I was going wrong (for me) in my short-term energy usage, and how to focus on my long-term projects.

I realised I wanted to be someone who kept up to date with friends, and was known as sensible and supportive, wise and compassionate. In order to achieve that, I had to keep an eye on their social media, message them regularly, and make plans with them. I had to do this even when it was inconvenient for me and I didn’t have much energy, because if I wanted the kind of friend who could support me, I needed to be a supportive friend. I wanted to be cultured, well-read, and interesting, which required me putting time into reading. Those became key priorities, because they spoke to the kind of person I wanted to be.

In terms of the things I wanted to do, I wanted to be working on my Master’s and related health and social care policy, I wanted to be creating poetic work on a regular basis including for NOT DYING, I wanted to be blogging. This meant that I had to put a significant amount of energy into those things, and formed the rest of my key priorities.

There I had five things that were going to be priorities in my personal life, so I ordered them in terms of focus:

  • Keeping up with friends
  • Working on NOT DYING, CRIPtic and other creative work
  • Working on my Master’s
  • Reading regularly
  • Blogging regularly

In order to do these things, I had to have a very strict routine. Before I can do these ‘personal growth’ tasks, there are life-saving/sustaining/extending tasks I have to focus on every day, including medication, bowel program, feeding tube, and physio. These care tasks, along with washing and dressing as needed, became non-negotiable. I had to be doing those things as often as they needed doing (whatever timescale that was on). This is usually doing them in the same order at the same time every day, because even if I feel awful, not doing them will make things a lot worse. I had to be taking rest, using breathing support, lying in the dark, ignoring PAs, and using every other strategy at my disposal in order to achieve those things. If I let some of them slip, I end up hospitalised, at best, and the consequences can be life-threatening.

Once I’d done them I could put time and effort into the priorities I had set myself. I had decided that they were more important to me than casual social media usage, chatting to PAs unnecessarily and other ways of using time and energy that didn’t result in moving me towards my long-term successes. This made it a lot easier to focus on the things I wanted to prioritise. I might want social media scrolling and to chat to a PA like a friend, but I want to make a success of my bigger goals even more, so I decided that I was going to make short-term sacrifices (like social media) to succeed in my aims in the longer-term.

This is a balancing act. If I overdo it, or don’t manage various conditions correctly I can have life-threatening exacerbation of my conditions, and end up in intensive care. When I’ve pushed myself too far I’ve lost function that I’ve never then regained. It’s very very difficult to hold these things in balance.

However, with my list of priorities I know that they’re the things I need to do to be the person I want to be – and they make small sacrifices worth it. If I have to stop scrolling social media to rest, I remember that I’m resting in order to complete the tasks I see as high priority. If I misjudge and end up in hospital, I treat that as a lesson learned, and try to find different ways of managing my time. None of this has been easy to learn, but in order to be and do the most important things, I’ve learned to let go of other parts of my life.

How do other people manage to navigate energy and pain limitations, and overall progression to achieve personal life goals outside illness?

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