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5 Things I Wish I Didn't Do While Treating My Fibromyalgia and CFS

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Ever since I began following a new treatment plan in 2015, I have strongly held onto the belief that I will regain my health. While the future is of course uncertain, it is this belief and determination that carries me forward. I do feel like I am now more control of my own health and that I am making decisions that are resulting in a steady upward trajectory. I still of course have a way to go and it goes without saying that along the way I have learned a lot; both about what works for me and where I have went wrong. I thought it would be useful to share some of the mistakes I have made with you, in the hope that I may help you from making the same ones. Here are five mistakes I have made in my recovery from fibromyalgia and chronic fatigue syndrome.

1. Being too focused on the bigger picture.

For a long time my ultimate goal was returning to work. I knew deep down that this was unrealistic and probably not in my best interests; my job was not only physically demanding but also involved two hours of commuting everyday. However, I wouldn’t allow myself to listen to what my intuition was telling me because I didn’t want to accept change.

As I had the goal of returning to work in the forefront of my mind, I kept pushing myself to do too much because I knew how fit I needed to be able to enable me to return. The result was I essentially tried to run before I could even walk. Despite the fact I was struggling to have the energy to do even the simplest of tasks, I still forced myself to try and go out for a walk every day… Not that I successfully managed to do so.

I lived in a constant cycle of boom and bust as a result. Some weeks I would manage to go for a walk a few days in a row, other weeks I wouldn’t make it out at all. And I didn’t feel very well either way. I was expecting more from my body than it was able to give and I kept crashing as a result.

When I finally accepted my current limitations, slowed down and instead stayed within my energy envelope (instead of always pushing) I began to make progress. It’s been slow progress, but my health has been more stable and I avoid the boom and bust we all know too well. What’s more, I have slowly and steadily been able to increase my baseline (what I can safely do in a day).

2. Failing to appreciate the impact of mental activities.

Previously when considering pacing, I made the mistake of only really thinking about physical activities. It took me a long time to really appreciate just how draining mental tasks are for me, too. Things like reading, writing and even watching TV are energy-draining for me. I was also spending way too much time on social media every day.

I wasn’t giving my body the rest it needed to enable it to heal because my mind was always switched on; I kept draining all the resources my body had every single day. As soon as I incorporated more rest and restorative activities into my day, I began to feel better.

3. Not adapting so I could better pace myself.

There can be a real mental battle between doing what you want to do and doing what you know you should do. But there are ways to balance those two things if you think about making adaptations.

As an example, three months ago I purchased a mobility scooter and I found myself wishing I had done it sooner. It has been so liberating and it has also been a big positive for my health (both physically and mentally). It allows me to do more of what I want to do (in my case walking my dog) without causing an exacerbation of symptoms or crashing.

I have limited energy and the scooter allows me to continue doing all the things that help me, such a Qi-gong, while still having the energy to do more of the things I want to. In other words, it is helping me to live more of the life I want, while still looking after myself and staying within my energy envelope.

4. Becoming too complacent.

When you do all the right things, little positive changes creep up on you unnoticed. The little changes turn into bigger ones and you eventually start to realize you are feeling better and are able to do things more easily.

The mistake I have made (and probably will continue to make every now and again as it is easy to do) is that I can become too complacent. I start to say yes to things, find that I manage them OK and so I keep saying yes more often than no. I then end up doing far more than normal until eventually I am given a reminder from my body that I need to take step back and slow down.

Slowly, slowly wins the race. As easy as it is to start running (figuratively speaking), getting ahead of yourself can be a dangerous thing to do. Even when you find yourself feeling better, stick to your baseline and keep slowly building up. It can be frustrating but this leads me onto my final point…

5. Getting frustrated.

It’s only natural to feel frustrated every now and again. However, if you let it consume you and if you become resentful, it doesn’t do you any favors. I’ve learned that I need to find peace with where I am at, trust that things will work out and try to be as chilled out about things as possible. I have surrounded myself with wonderful people who do a great job of helping me to stay grounded. They remind me of things I need to hear and will also put things into perspective for me when I need it, too. It’s been a great source of support and they always help get me back on track again.

This blog was originally published on February Stars.

Originally published: July 20, 2016
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