Share a story – Jo Saxton
‘Hope doesn’t require a massive chain where heavy links of logic hold it together. A thin wire will do…just strong enough to get us through the night until the winds die down.’
– Charles R. Swindoll
Six years ago, our 10 year old happy, sporty son became chronically ill and bed-ridden with fatigue. We hoped our GP would help us navigate the NHS to find the specialists to make him better. Like so many with chronic fatigue, this didn’t happen. Our son just received the CFS/ME ‘label’ and the blanket treatment option of CBT/GET – which we politely declined. However we felt we needed to find the root cause(s), and optimism gave us the hope and energy to search.
Looking after a chronically-ill child, coping with disappointment of the medical profession fobbing us off, and dodging the anticipated safeguarding issues that were thrown at us was very stressful. Not knowing how to help our own child made us feel helpless. However we connected with people in social media groups who were going through the same thing, and ultimately found a path that felt right for us. Building a ‘community’ of supportive people around us from whom we could ask advice, and a connection with others going through the same thing– either face-to-face or online – was so important and it made a huge difference to us.
Each person with CFS/ME is unique, and the cause of their illness – and therefore the appropriate treatment plan – is individual to them. Tests showed our son was severely fatigued, and had Lyme disease and mould toxicity (from his primary school classroom’s leaky roof!), and all the accompanying complications such as food sensitivities, heavy metal toxicity, electro-sensitivities, POTs, etc. All of these were causing a systems imbalance in his body resulting in poor mitochondrial function. No wonder he was chronically-ill and exhausted!
Like a lot of people, we did the usual ‘scatter gun’ approach – trying anything and everything – and then gave up after a year as we didn’t feel it was working.Looking back, this wasn’t the right approach for our son and we spent a lot of money on supplements and alternative therapies that various online health ‘experts’ and social media groups advocated. It did get quite crazy and we felt we were losing our son’s confidence in our ability to help him. Functional medicine approaches to tackle the Lyme and mould helped to a point, but the fatigue was always there in varying degrees and no-one seemed able to completely eradicate it.
So we went back to the drawing board and focused on lifestyle factors, such as nutrition, sleep/relaxation, stress, movement/exercise, and connecting with friends and family to keep his spirits up. We also made sure his environment was ‘clean’ and devoid of as many chemicals, perfumes, pesticides, toxins as possible. There’s much we can do to help ourselves and it doesn’t need to involve a lot of money for private testing. Not everyone has deep pockets after all. Just focusing on the basic lifestyle factors, such as sleep and optimising your circadian rhythm can make a huge difference and doesn’t cost a penny!
During our son’s illness, I read a lot about mind-body medicine. I discovered that the way we interpret our world can affect our physical and mental health, and that being negative all the time directly impacts the immune system and may lead to a negative outcome. When I read that optimistic people have better life satisfaction, relationships, physical and emotional resilience, better immune response, and live longer lives, I thought keeping an optimistic attitude was the best thing our family could do, so we focused each day of what was going well for us. We struggled with it sometimes but that was our goal. Also, when someone has been ill for a long time, it’s hard to see any tiny health improvements. You don’t get better overnight, no matter how much you wish for it. We therefore tried to remind ourselves at regular intervals of any positive progress our son was making. It was a good way to track progress, to celebrate our wins, and to keep us motivated, no matter how small the gains.
When you’re chronically ill, the last thing you want to do is to listen to the ‘positivity culture’ we’re bombarded with on social media! I just want you to know that it’s normal and perfectly okay to not be optimistic all the time. Goodness knows my family and I had bad times when we felt we’d reached rock bottom – a lot! It’s important to allow yourself to experience the full spectrum of emotions – optimism through to despair and everything in between – and to surround yourself with people who will support you with that. We’re all human after all.
I read some research which showed that focusing on what is going well in your life –no matter how trivial or small that may be – can help to flip the switch in the brain, resulting in better health outcomes. So on our good days and when I was feeling ‘strong’, I would ask myself questions, such as:
– ‘What has made me smile today?’
– ‘What can I control today?’
– ‘What support would be helpful right now, and who can I ask?’
I first heard about the charity, ‘Smile For ME’, on a Facebook group and was encouraged by others to nominate my son for one of their ‘Smiles’. I didn’t think for a million years that he’d receive one – I’m never that lucky with winning things! However one day a package DID arrive for him. He was thrilled to bits and it really boosted his mood to receive gifts from people who didn’t know him, but who cared enough to just want to put a smile on a stranger’s face. The smallest of gestures from this wonderful charity has a profound impact on people. Just knowing someone cares can mean a lot to people, especially to those living with a chronic illness with little or no support.
After years of disrupted education, our son has returned to secondary school and is about to sit 7 GCSEs, the minimum to get into college. If we’ve learned anything over the past few years, it’s the importance of pacing, always leaving something in the tank, and supporting good mental health! He’s back to his sports, has a wonderful social group and is optimistic for a brighter future. He now has a better appreciation of how his body works, and the tools to maintain good health as an adult. He wants to study a health qualification at university but hasn’t yet decided which. We couldn’t be prouder of him and the resilience and tenacity he has shown through all of this.
I’ve now qualified as a Functional Medicine Certified Health Coach. I would say thatI’ve always been a ‘helper’ through life, and so being a health coach is my dream job. I’m not a medical doctor, but I do have a science background and a deep love of learning. I have spent over six years learning about health coaching and functional medicine, and how lifestyle choices can directly impact health and wellbeing. I want to give people the hope that things CAN be better, and to support parents with chronically-ill children and teens on their journey to recovery. After all, I have that t-shirt!
I’d love to hear how you stay optimistic, and how your experiences with chronic illness and those difficult moments along the way have led to a positive and unexpected outcome.
Wishing you all the best.