This week we’re on holiday in Devon. Walking around towns and on beaches I have a feeling of being almost ‘normal’. My CFS/ME symptoms are so much better. I can walk further, have less brain fog and basically just seem to have more energy. This isn’t the first time that this has happened to me – it’s been a recurring theme on most holidays that we’re been on in the past 5 years. When it first happened I was convinced that it was a sign that the CFS/ME was ‘in my head’ and that when I had a distraction it went. Not the most helpful self-analysis and certainly one that triggers huge amounts of self-doubt and self-criticism.

However over the past year my understanding of my own peculiar brand of CFS/ME has improved which has allowed me to rationalize things like this. This understanding has come mostly from my work with Optimum Health Clinic whose practitioners have personal experience of CFS/ME and have a level of knowledge that I have never found in any traditional practitioners. I know that their take on the development, stages and symptoms of CFS/ME might not match what you have been told by other practitioners or have found yourself on Google. However to me it makes total sense of what is a totally bemusing and contradictory condition. And I need to make sense of this to feel like I am in control rather than being controlled.

It would probably help at this point to put my own CFS/ME into context. I don’t want this blog post to turn into a long list of all the things that I have wrong with me but summarizing how my CFS/ME has developed will hopefully help you to pick out similarities between how I feel and your own CFS/ME.

When I first developed fatigue post radiotherapy in 2012 the first symptoms that appeared were mostly centered around my eyes. Tired, heavy, gritty eyes with a sudden deterioration in my eyesight. It seemed to be the first sign that my energy levels were dropping and would be quickly followed by a general drop in energy. My upper body seemed to struggle the most – particularly my arms and I found writing difficult. I was incredibly lucky that I didn’t ever experience a complete crash in energy which led to weeks or months in bed. Ironically as I researched chronic fatigue the absence of any bedbound period became very confusing to me as it seemed to differ from the usual CFS/ME route. I even doubted whether I actually had CFS/ME. I now know that not everyone who has CFS/ME goes through this Stage 1 crash period.

Although I experienced this loss of strength in my arms/hands, for quite a while my legs seemed less effected. I was able to carry on walking for reasonable periods of time which I have to say helped me to retain a level of positivity. A year ago though I went through a full on crash which did take away my ability to walk – for a period of time I could literally only manage 3 – 4 minutes before my legs would start to give out. Even standing at the stove was impossible. These few months were incredibly scary and gave me a small insight into what Stage 1 of this condition feels like.  Gradually with guidance from the Optimum Health Clinic and with huge amounts of support from my husband and girls I got myself out of this crash period.

It was as my physical energy improved that I began to get the impression that my body was split into 2 – my head and the rest of my body. My physical strength was returning which meant I could walk and stand more easily and for increasing periods of time. Even the strength in my arms improved. However this lessening of symptoms wasn’t being repeated in my head. My eyes were still tired, gritty, heavy and sore most of the time. I was getting a lot of headaches and feelings of immense pressure in my face and head – like things were swollen when they weren’t. I was also experiencing delightful symptoms such as tinnitus and I had recurring swollen glands in my throat and neck.

Alongside all this was an ongoing struggle with sleep. Falling asleep, staying asleep and early morning waking. My body seemed wired to respond to anything that didn’t feel ‘safe’ at night – whether that was sounds, worries, falls in blood sugar levels, digestive issues. Literally any of these things would affect my sleep. I have always found daytime napping impossible and this hasn’t changed despite the CFS/ME. Daytime relaxation might enable me to lightly doze for 10 minutes or so but even when my body is crying out for sleep it doesn’t come. I often feel that if I could just get my sleep sorted everything else would fall into place.

So often when you tell people you have CFS/ME they will zoom in on the fatigue element – probably because everyone has experienced extreme tiredness at some point so they find this the easiest thing to relate to. However may people who have CFS/ME would tell you that the other symptoms can be just as hard. Aching and stiff joints, headaches, tinnitus, sensitivity to sound and light, poor sleep, alteration in hearing and vision, digestive issues similar to IBS, food intolerances, difficulty processing and remembering information, poor absorption of nutrients and minerals, increased histamine levels. I experience all of these and to be honest it is these symptoms which cause me the most distress and affect my quality of life the most. Again from my work with the Optimum Health Clinic I now get that all of these symptoms are the result of my body being in state of high alert and being totally wired most of the time. My nervous system has been permanently in a ‘fight or flight’ state which affects the way my body functions.

Gradually some of these symptoms are improving for me through the use of relaxation techniques, supplements and healthy eating. I now know that my body is incredibly sensitive to its environment. Noise, lots of people, lots of harsh lighting will trigger my ‘head’ fatigue quickly along with hearing and processing issues and brain fog. I can walk for about an hour now in a quiet location but reading, being on my laptop, doing anything that involves focus and concentration, even meeting friends for a coffee remains a challenge and will trigger the most extreme symptoms pretty quickly.

When I’m on holiday I am able to use the sort of energy that my body likes – physical energy. I spend less time processing information and less time on cognitive activities. I used to feel almost embarrassed that my symptoms lessened when I was away. Like a bit of a fraud. Worried that people would think I was making things up the rest of the time. However I now know that my own peculiar brand of CFS/ME simply reacts better to physical activity in calmer environments. I sometimes imagine myself going off on a long hike – something like the Californian PCT but without the hard bits! I wonder if I spent months walking in the calm and beauty of nature would my body finally get the chance to reboot? I love the idea that maybe I could walk myself back to fitness. Just not sure that I’m brave enough to try!