> ## Content Index > Fetch the complete content index at: https://www.hello-self.fr/llms.txt > Use this file to discover other available public pages before exploring further. # Getting better: What activity expansion looks like - URL: https://www.hello-self.fr/activity-expansion-en/ - Published: 2025-12-23T15:00:57.000Z - Updated: 2026-08-13T12:53:22.000Z - Description: What is it like to gradually increase your activity levels when you have ME/CFS and long COVID? I’ll share what my experience was actually like. - Author: Alice - Tags: All posts, #english, Understand & learn [🇫🇷 Lire en français](https://www.hello-self.fr/activity-expansion-fr) Listen to this post 0:00 /625.129931 1× ✋ **I am not a doctor. I am sharing my personal experience. This should not be considered medical advice. Always consult your healthcare providers for any decisions regarding your health, and listen to your body.* > You may find it helpful to read the post about [*the signs you are healing*](https://www.hello-self.fr/signs-of-recovery-en/) first, before diving into this one. Once you feel more stable thanks to regulation tools and pacing, your energy will slowly return, and you’ll **naturally start expanding** your activities. There are a lot of narratives around activity expansion, but they all agree on the fact that progress is **gradual and non-linear**. In this post, I’ll share how it unfolded for me: how I approached **deconditioning**, my **expansion rules**, and **concrete examples** from my own experience. ****Menu** [****I- Managing deconditioning**](#deconditioning) [****II- My activity expansion strategy**](#strategy) [1- My expansion rules](#rules) [2- Handling overwhelm](#overwhelm) [3- Examples from my own journey](#examples) [****III- About GET (Graded Exercise Therapy)**](#get) [****Conclusion**](#conclusion) ## I- Managing deconditioning Physical deconditioning and muscle loss is indeed a **consequence of energy-limiting conditions**, and yes, they are real issues. --- As patients, we receive **mixed** **messages** about this all the time, from doctors, relatives, or patient associations: > *"You should avoid deconditioning.* > *Your body needs movement to be healthy.* > *But you should never push through your symptoms!* > *So you should rest more!"* 🤷‍♀️ --- Finding the right balance with movement is difficult. When I was bedbound, I saw my body changing, and I felt **powerless and scared**. Back then, my coach told me a few things that helped me tremendously **manage my fears**: - Deconditioning is real when we don't move enough, but **it doesn't happen *that* fast, and it is reversible**. - Worrying about deconditioning is not helpful. Movement is important, ***but*** with ME/CFS and similar conditions, **forcing your body to move** **in a dysregulated state** ***will* make things worse**. - Pushing through is ***not*** the way out. Finding **a path back to joyful movement** in a regulated state is. - **Reconditioning happens naturally** once you start moving again in a regulated state: first through daily-life movement, then with gentle exercise once you're ready. ## II- My activity expansion strategy ### **1- My expansion rules** > **80% confident** When I feel like doing something, I ask myself: \- Do I feel safe and regulated right now? \- Do I feel 80–90% confident that I can do this? If yes to both, then I’m in the right state to try. > **Baby steps** Wherever you are in your recovery journey, **don't focus on the final goal**. Full recovery can feel impossible, because you're imagining everything a fully recovered person can do ***through the lens of your current state***. Right now, only the next baby step matters. > **No pressure** Specific goals, timelines, and tracking tend to reinforce hypervigilance and unrealistic expectations. Personally, I found they never helped. > **Enjoy** During the activity, stay present and focus on enjoyment. Afterwards, celebrate! > **Welcoming symptoms** If symptoms show up after an activity, it's not a failure, it's information about your nervous system's state. A slight increase in symptoms while expanding is expected and part of the process. More details: [managing setbacks](https://www.hello-self.fr/setbacks-en/) and [pacing](https://www.hello-self.fr/pacing-en/). ### **2- Handling overwhelm** ### When you start expanding your capacity, the goal is not to do activities in "super hard mode", it's to **make activities *feasible* again**, within your current capacity. At first, **use all the coping mechanisms that help reduce overwhelm**, so you can focus on the activity itself, and the joy it brings. Here is a non-exhaustive list of things I personally found helpful. > **🧠 Reduce cognitive load** - Wearing noise cancelling headphones or earplugs - Using an eye mask (for example during car rides, to reduce motion overwhelm) - Wearing sunglasses and a cap - Choosing calmer times for outings (fewer people, less stimulation) > **💪 Reduce physical load** - Mobility aids (I used a wheelchair outdoors for a little over a year) - Wearing comfortable clothes - Finding ways to stay as reclined as possible (for example, adjusting car seats) - Asking for help, so you can participate without carrying all the load > **🧘‍♀️ Reduce emotional load** - Planning ahead to make the activity as predictable and stress-free as possible - Bringing soothing objects (I used fidget toys, a small cushion, or a plush toy) - Expressing your needs clearly (asking for breaks, stopping earlier, etc.) - Choosing whether you feel safer alone or accompanied (Being with a loved one can bring co-regulation; being alone can help you fully respect your rhythm. Do what feels safest.) 💡 ****Will I need coping mechanisms for the rest of my life?** Not necessarily! Use coping mechanisms for as long as you need them, and respect your body's needs at each stage of recovery. But as you progress, you'll **know intuitively** when you are ready to **let go of a coping strategy**. ### **3- Examples from my own journey** Very **gradual** **increases**, relying on **my body’s intuition**, and taking (sometimes ridiculously) **small steps** were key in my progress. > ***🚶‍♀️* Starting to walk again** - I started by walking from my bed to the front door. I opened it, looked outside, breathed fresh air for a few seconds, went back to bed. Success! - Then I sat outside in a recliner to get used to outside sounds. - Then I took a few steps on my deck. - Then I walked to my apple tree in the garden (about 20 steps). 🌳 - Then to my mailbox and back. Slowly, I expanded my steps around my house, then around my block, then further. Walking **slowly**, **mindfully**, paying attention to my surroundings and to my breathing. Each time, **I let my body take me where it felt safe to go**. > **🚗 Driving** - I started with short car rides as a passenger with my partner. - Then I sat in my own car and played with the pedals and gear stick for a minute, without starting the engine. - Then I simply started the engine to see how it felt. - Then I parked the car just a few meters further away. - Then I drove once around the block. When I started driving further away, I sometimes needed to **actively regulate myself during the ride**, and I was able to bring my nervous system back to a state of safety. > **🛒 Going back to the supermarket** This one was a challenge. **Supermarkets have it all**: strong lights, loud music, food smells, lots of people, waiting time, and interactions. - First, I drove to the supermarket, just to have a look at it from outside, and went back home. - Then, I entered the supermarket and left immediately. - Then I went in, grabbed one item in the first aisle, and checked out (I remember it well, I picked lollipops for Halloween). - Eventually, I was able to spend more time inside, slowly looking at products. 🕒 ****How long did all of that take?** For me, each progress phase took ****months**. I'm not saying that to scare you, some people do have quicker progress! But if it is slow for you too, it ****doesn't mean you are doing anything wrong**. ## III- About GET (Graded Exercise Therapy) Many doctors still recommend GET. While it can be helpful for many conditions, it is not designed for ME/CFS recovery. GET is based on a predictable, linear progression, whereas recovery from ME/CFS and similar energy-limiting conditions is **non-linear** and requires **day-to-day adaptation** based on the nervous system's current state. This doesn’t fit well with the traditional medical model of recovery. On the path to recovery from ME/CFS, you may walk 1,000 steps one day, then only 50 steps the next, and then 2,000 steps a few weeks later—rather than 300 steps consistently every day. This is a non-linear form of progress. ![Two arrows illustrating an upward curve. The first is linear: progression - stabilization - progression. The second is non-linear: up - down - up - down, but with an overall upward trend.](https://www.hello-self.fr/content/images/2025/12/Progress-en.png) My progress looked like the second drawing: ups and downs. I personally chose not to work with a physiotherapist, but this was an individual decision. Some people do benefit from more guided support. If you explore this route, **look for someone who understands energy-limiting conditions** and **trust your gut** to assess whether this person is a good match for you! Remember: the goal is always to bring **more safety and ease into activity**, not more fear and hypervigilance. ## Conclusion This journey will test your **resilience**. But it can be seen as **learning a skill**. Because that's exactly what it is: your brain is **relearning safety from scratch**. Any meaningful learning takes practice and **many attempts (and failures)**. Each tiny win ***is*** proof that your body is able to heal. You are doing incredibly difficult work, that very few people will ever have to do in their lifetime. **Be kind to yourself.** I love this mantra that Jan Rothney cites in her book: ***“If I did it once, I can do it again”*** [Back to posts list](https://www.hello-self.fr/tag/en) ## 👋 Hello Self newsletter Sign up to receive an email when a new post is online Subscribe Email sent! Check your inbox to complete your signup. No spam, no ads. Unsubscribe anytime.