The Art of Resting

Silly me, I over did it… again! I had a busy weekend and now I’m having another flare up of my arthritis argh. So todays post will be a shorter one.

We visited family over the weekend, where Will and I got to see our new baby nephew for the first time which was really lovely. It takes us a good 6 hour round trip in the car, so there was a lot of travelling involved. We also had yummy hot chocolates and cake in cafés and we went to the cinema to watch Gladiator 2. Which to the outside world wouldn’t seem like much. It would sound like a pretty typical fun weekend for most people. But to someone with inflammatory arthritis and fatigue, this can be a lot on the body.

It still surprises me that even positive experiences can be really draining with a chronic illness. Which can be super frustrating. Who wants to limit how much fun they can have with their own family on the weekend!?

At home I plan my whole day around pacing my energy levels. I feel I have gotten pretty good at balancing my activity versus rest periods when at home now, as I’m getting less and less flares ups over time. I’ve built a good routine. However, it’s a lot easier to do this in my own environment with just my husband and I.

I get so used to doing this and feeling ok when I’m at home, that it gives me a false sense of security. I think that I have more energy and can do more things than I actually can. So when I do eventually go outside and do things, my energy gets drained super quickly. It still catches me off guard. Its a sad reminder of how sick I still am.

I forget how much I protect my body from stressors when I’m at home, which is really hard to do when you go outside; you can’t possibly control everything and everyone else around you. All those small stressors start to compound and build up over the day. They may not seem much on their own, but pile 4 or 5 up in a short space of time and your energy goes bye bye.

And these ‘stressors’ wouldn’t even phase most healthy folk. Stressors to me now are things like: background noise in cafés, underlying pain and pretending you’re not in pain (wearing ‘a mask’), eating sugar, talking, slightly cold temperatures, standing still in one spot for more than 1 minute, sitting. Yes, even sitting is a huge stressor for my body these days, especially sitting for long periods of time (e.g. car journeys/cinema/catching up with family) or sitting on a hard surface (e.g. bench in a café).

I seem to magically forget how painful just plan old sitting can be with ankylosing spondylitis. I don’t even notice anymore how much I need to constantly move, until I can’t. Most people would think that sitting is a form of rest, but for me, it’s the fastest way for my joints to seize up which then leads to pain, which then leads to fatigue. I just don’t think I can physically sit still in the cinema any more, or sit down for a meal at a restaurant, without having to get up multiple times, which can be really disruptive to everyone around you.

So by the end of the day, I ended having a panic attack in the car on the way home, I cried hysterically, ranted at Will at how much my body sucks, my whole body was pulsating and shaking in pain, so much so that I thought I was going to throw up and/or pass out. It felt like acid was coursing through my joints.

When we eventually got home and went to bed, my joints were so sore that I found it hard to sleep, which of course then makes you more fatigued. It will take me a few days, possibly a week to recover. Which seems ridiculous, I know! How could one day of fun do that to you.

I’m afraid that’s the reality of living with a chronic illness at times.

However, I’m not going to let it upset me. I will try to learn from it. Analyse what I could have done differently and try to put those things in place for next time. This weekend has shown me that I still have a lot more work to do.

Things to implement for next time:

1. Continue getting to know what my boundaries are and learning to put these in place. Be honest with myself on how much I can do. Keep telling myself that its not rude or disruptive to take care of yourself. Don’t feel guilty about needing more selfcare, you are dealing with a lot.

2. Get better at communicating with those around me about what I need. I know I can’t always be accommodated, but it’s worth at least asking. People won’t know unless you say. You have become so good at masking, that people may have no clue you’re in so much pain unless you say so!

3. Excuse myself and go take a quiet moment when the noise gets a bit much, to avoid overstimulation. Can you buy yourself some of those noise reducing ear buds?

4. Schedule in more time for stretches and mini walk abouts for my joints

5. Only book 1 or 2 things in a day instead of multiple, even if you are feeling good at the time of planning!

6. But yes sadly, also admitting to myself and to those around me, that sometimes it will mean just having to not go to an event and miss out, especially when my body is just not feeling up to it.

Today I am allowing myself to do very little. I need to rest. I also need to remember that resting for me may look different to what other people do.

Resting my body today will actually mean: meditating to calm my nervous system, frequent gentle stretching, a hot bath, eating healthier, avoiding overstimulation by limiting noise, having minimal conversations and very little decision making, maybe having another cry for emotional regulation. And the biggest one of all, not feeling guilty about any of it, otherwise it’s not really resting at all.

So balancing activity and rest, really is a bit of an art form to master with a chronic illness. It involves a lot of planning, a lot of decisions, compromising, sacrifices, explaining, avoiding, protecting, comforting, mistakes, learning and a whole lot of self reassurance.

I wish it were as easy as just sitting down and putting your feet up!

Sending you all healing thoughts. See you next week, when I hopefully feel a little more rested.

Lots of Love & Hugs,

Amanda x

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