5 mistakes I have made in my recovery from fibromyalgia & CFS. Click to read or pin to save for later.
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Ever since I began following the Vital Plan Restore program 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 gone 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 5 mistakes I have made in my recovery from fibromyalgia & CFS.

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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 2 hours of commuting every day. 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 that 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, whilst 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 realise 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 okay and so 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 to 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 favours. 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 to get me back on track again.

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5 mistakes I have made in my recovery from fibromyalgia & CFS. Click to read or pin to save for later.

What are your thoughts? Can you relate to the mistakes I have made? Is there any other advice you would like to share? Let me know in the comments below.

Author

Hello, I'm Donna. I was diagnosed with Fibromyalgia in 2013 and started this blog shortly after. After my health declined significantly the following year, I decided to become my own advocate and searched for answers. It took two years but, in 2016, I finally discovered I had Lyme Disease. On February Stars, I share my personal journey back to better health; discussing what has helped me and the mistakes I've made along the way. I also cover topics on self-improvement, managing symptoms and living life to the fullest with chronic illness.

18 Comments

  1. Angela Schamp Reply

    Great post! I have been and am still guilty of each and every one of these “Mistakes”. This is a great reminder to recheck myself.

    • Thank you Angela. They are really easy to do so don’t be too hard on yourself. Sometimes we need the reminder to recheck like you say 🙂

  2. Linda Mae Watson Reply

    Hi Donna, Thank you for sharing your 5 mistakes you make. I make some of the same ones you talked about and then I pay the price. I wanted to ask you a question. Have you had a sleep study done? I had one about a month ago and the results were that I have high moderate Sleep Apnea. I am not sleeping and resting at night and my doctor things that is the cause of my extreme fatigue and some of the symptoms of my Fibromyalgia. I am waiting for my CPAP machine and the person who comes to my house to set it up for me. I am very excited to see if it will help. I stop breathing about 30 times in the night. Kind of scary. Donna I hope you have a wonderful evening and thank you again for what you are doing for all of us. Linda

    • Hi Linda Mae. That’s really interesting and I do believe sleep apnea and fibro can be linked. That is really scary that you stop breathing up to 30 times in a night! I don’t know if you’re

      A great post Donna. I am guilty of all of these, which isn’t great consider I pride myself on handing out advice to fellow fibro sufferers!

      Someone else also talked to be about the link between sleep apnea and fibromyalgia recently, so I’m going to check it out.

      • Thank you Sarah. I can be the exact same. At times I have my husband telling me I need to follow my own advice as it’s very easy to do the above.

    • This couldn’t have come at a better time for me to read! I am slowly and finally making some headway with my health issues and it is REALLY easy to get overwhelmed by everything you a) want to change b) want to participate in again and trying to figure out who you are NOW both sick and trying to be well again. Thank you!

      • Hi Genevieve, that’s really positive that you are making some headway with your health. It is a slow road and it is easy to get overwhelmed because you want things to change as quickly as possible and get back to some kind of normal. It’s a weird grey area of chronic illness; your symptoms are improving and you want to do more but you are still sick and have limitations. However, know that with time, patience and persistence you will continue that upward trend 🙂 Focus on the now and what is helping you but hold onto hope and know that you will be able to do more in time.

    • It’s sounds like you are making progress in your journey and I’m so glad to hear that!! I have found in my journey with chronic illness (now we know I don’t have fibromyalgia, I have Ehlers-Danlos Hypermobility Syndrome) that getting frustrated is the thing that’s most detrimental to my health. It doesn’t benefit anyone. In fact it harms others and harms how I feel, too. Cheers to taking deep breaths and remembering that it’s better to think positive thoughts. <3

      • Thank you Lauren. Yes, I definitely feel as though I am. It is slow going but I am for sure making forward progress. Sometimes I need to remind myself to think outside my immediate situation and look at the bigger picture to remind myself of just how far I have come. Getting frustrated for sure doesn’t serve us and, as you say, it does us no favours. Always good advice to stop, take a breather and remind yourself of more positive things 🙂

    • Hi. Thank you for your post. Yep I do all of those mistakes and more. Eg
      1 I listen to peoples judgements, you know the type they can’t even spell fibromyalgia but are dishing out advice, way more than my GP and hospital specialist does.
      2, I eat diary for one meal and oddly believe I can suddenly handle it. Then the tummy hurts, I add to my achy joints and proceed with a migrain.
      3, I push myself and feel guilty that I can’t do more for others.
      4, I ignore the signs,because deep down I believe everything else is more important than I am.
      Isn’t that strange, should I believe that I’m the most important thing to me?
      I have found stretching and slow walking around very beneficial. It’s taken me years and one dog to work that out and am still trying to do it regularly and in the right frame of mind.
      Keep up the posts. It’s great to know we’re not the only ones fighting this.
      Xxxx

      • Hi Lydia, I think we all struggle with these things so please don’t be too hard on yourself. Learning to prioritise ourselves is not easy to do. It’s great that you have found exercises that best suit you and that you are finding beneficial. Thank you, it’s great to hear you are finding my posts helpful.

    • Even though this post was from a year ago I was just reading it via twitter. This all sounds very familiar. I had no choice but to work, otherwise I would have been homeless. But it took a huge toll. Even after retiring my capacity for physical labor out in the yard is limited to 2 hours. I’m glad I can do that, at least, but gone are the days when I could spend all day out there.

      People don’t realize that when they are seeing me socially, that is the apex of my day. Once I am home I am pretty much down for the count. Very moderate exercise like walking helps, but it’s too easy to push too hard, be too ambitious.

      Since breaking my hip and the resultant surgery, regaining my previous energy levels has been a struggle. Upon reading of the effects of ibuprofen on the heart, I have gone off that and the resulting detox has been unpleasant to say the least. Because I am still having to adhere to movement restrictions, my yoga practice is nowhere near where I need it to be to better manage my stiffness and pain. Available prescription medications for fibromyalgia are not an option for me because of sensitivities to chemicals.

      So I am very frustrated at this point. BUT….I know it will get better. I have been here before in the detox fallout, I know the pain will ease up a bit. Just another month to go on movement restrictions, then I can start working back toward full range of motion. That is my carrot of hope. And the weather is warming up little by little, I can be outside a little bit more.

      Sorry if this is rambly, my brain is not organizing very well today. It is what it is! Such is life with fibro.

      • Hi Colleen, I can hear the frustration in your words. It’s so difficult to take a step backwards and rest but it sounds like you have been through a lot with your surgery. I hope that once your hip is healed that you can return to your yoga practise and exercise as I am sure this will help you to feel more like you used to. And hopefully, the better weather will help too! Coming off any drug is hard and I hope those symptoms ease with time too.

    • Hi Donna
      Just reading this today but as usual the timing is perfect.
      I was having a lovely week and feeling great but I did one little thing and my house of cards cane tumbling down.
      I need to rest and regroup I guess.
      Thanks for always being spot on

      • Hey Linda, sorry you’ve had a flare up. I hope the rest helps you to feel better in a few days xx

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