ME/CFS/FM and Building Self-Help One Step at a Time

The things that I do to optimise my wellbeing are quite numerous. I have a complex daily routine and I invest a fair amount of my energy in making sure I can be as well as possible. I do all this because it works, I feel well a fair amount of the time and generally my symptoms are very mild. However these things have all been built up over time. As each investment in self-help has paid off, I’ve been able to invest a little more of my energy in something else. Each little improvement has been a stepping stone to the next. At the beginning of my illness I just didn’t have the resources to invest in everything I do now. Here is the order in which I was I developed my self-help practices:

Priority 1: Damage limitation

The most important aspect of self-help is avoiding anything that can make the illness worst. Primarily this means learning to recognise our energy limits and making sure we don’t exceed them. (I find this an on-going challenge as it also means avoiding the temptation of throwing yourself into things as your energy improves.) At the beginning of the illness I found this very difficult, I didn’t really understand what was needed of me and I didn’t want to face the fact that I had a chronic illness. It was only once I grieved my losses and came to an acceptance that life needed to be lived differently for a while, that I was able to turn my attention to learning about how not to use too much energy. There are also many other things that can make our illness worse: environmental factors such as noise, light, temperature and chemicals; food intolerances; toxins and infections. Learning how to minimise our exposure to these things is another thing that takes time and can often only be approached one at a time.

Priority 2: Tackling illness mechanisms

For me the next stage was aiming to tackle the ways the illness affected me. My first priority was to tackle sleep disturbance. Getting a little more, better quality sleep released a little energy for investing in other things. Another priority was trying to calm my overactive sympathetic nervous system with relaxation, breathing techniques and meditation I later discovered how helpful it was to regulate my body clock with a very regular routine. I also tried to tackle my immune dysfunction with a variety of supplements and minimise my toxic overload.

Priority 3: Low energy happiness strategies

Just as important as dealing with the physical side of the illness is learning to cope with it emotionally. Even once I’d grieved and accepted the illness I was still no longer able to do the things that made me happy. Learning new ways of being happy that are possible with limited energy, is really important if you’re going to have the motivation for all the other aspects of self-help.

Priority 4: Optimising conditions for healing

Up until now everything that I’d learned was all about illness management, but I wanted to do more. I wanted to do everything I possibly could to give my body the best possible chance of healing itself. This meant eating as healthily as possible; introducing gentle movement into my routine to optimise circulation and detoxification; gentle self-massage; burning health promoting essential oils; experimenting with other supplement regimes and learning self-healing meditation practices.

Priority 5: Cultivating energy

I soon learned that certain practises can actually increase my energy. Tai chi, mediation and yoga all have this effect so I became much more disciplined in including these things in my daily routine. I also try and make time for other activities that energise me.

Priority 6: New approaches to fulfilling my potential

By now I have made great strides and have a comfortable sustainable lifestyle. OK, I still spend far more time and energy on self-help than most people could even imagine and I am still limited somewhat, in my ability, but I am now able to achieve a great deal more than you might expect someone with a chronic illness to achieve. Now I’m learning how I can make my contribution in a sustainable balanced way: recognising how I can express my talents within the constraints of my illness. I can now dream of a brighter future. I have set my goals and step by relaxed-effortless step, I am working my way towards them.

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Building a self-help routine one small step at a time when you have a chronic illness

2 thoughts on “ME/CFS/FM and Building Self-Help One Step at a Time”

  1. I am currently working towards every single one of these steps although I am not sure I could have put them all into words quite as well! I keep thinking I have done the grieving and accepting part but then the reality and frustration of my illness hits me again and I realise I am not quite there yet! But this post has really reassured me I am doing and focussing on all the right things. I am just not quite as far along the self-help road as you yet. But I will get there! Thank you.

    • Hi PJS,

      Don’t be disheartened by the regular need to grieve, I think it’s a continual process. Even though I’m very happy with where my life is now, every now and again those feelings crop up again. But I just allow them to be and they soon move on. It’s great to hear that you are already working on these steps! I have great faith that you will get there! Warm wishes, Julie x


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