I was first diagnosed with M.E. in 2007 after a viral illness and three traumatic bereavements. I also had several chest infections and food poisoning. I had to leave my job as a nurse and instead worked part-time in an after-school club. Over several years I slowly improved with lifestyle changes and complementary therapies. I was able to enjoy holidays, re-start piano lessons, sing in a choir and attend art and yoga classes. I really loved walking our dog.
In 2015, my health declined again. I was diagnosed with an ectopic parathyroid adenoma that caused osteoporosis. After a failed operation, I found a specialist in London who successfully removed the tumour, but the whole experience was extremely stressful.
Following the second surgery in 2018 I became severely fatigued with dysautonomia and multiple debilitating symptoms. I was largely bed- or sofa-bound, anxious and very depressed. At my lowest point, I couldn’t tolerate TV or even look at my phone for more than a few minutes. I couldn’t socialise at all or even go outside. Local fatigue and mental health services couldn’t provide the level of support I needed, which was devastating and frightening. My GP prescribed various medications for depression and anxiety, but this only worsened my physical symptoms.
I started private therapy, where I began to understand how long-standing nervous system dysregulation had affected my health. l learnt that as a highly sensitive person and also a people pleaser I had not looked after my own needs. Since 2018 I’ve worked with functional medicine practitioners and nutritionists. We have had to pay for everything. Long standing digestive issues have contributed to my ill health.
It has been very hard missing out on life, especially not being able to walk our dog and not being able to help with my 4 granddaughters. It has also been very challenging for my husband who shops, cooks and supports me. A lot of the time I felt invisible and there was a lack of understanding of my condition by a lot of people including health professionals.
Despite losing many friends, I’ve had a lovely carer and I’ve found good support within the online M.E. community. I’ve made a few really good friends with M.E. through these groups. I have a supportive, loving family and my poodle, Willow, who is a very special companion for us.
What Helps Me
Yoga Nidra, gentle movement and breathing exercises.
Therapy, journalling, Emotional Freedom Technique and vagus nerve exercises.
Creativity such as writing and illustrating books for my grandchildren.
Music (sharing tracks with a friend and playing piano for short periods).
Practising self-compassion.
Taking small steps forward.
Talking with people who really listen. It’s good when people take an interest in me. It is helpful when people can acknowledge my difficulties while also engaging in broader conversation.
Small acts of kindness. Kind words and messages. Checking in with me.
Cuddles — especially with Willow, Piya (our son’s dog) and my grandchildren.
Moving Forward
Progress is very slow, but it is happening. I continue with nutritional therapy, yoga nidra, breathing practices, and emotional regulation. Creativity brings me joy. I am able to visit my son’s house briefly and go on short outings in the car.
The combination of both severe M.E. and depression has been traumatic, challenging and isolating but there are moments of light. With the love of family, the comfort of Willow, and small daily steps forward, I hope that I can continue to improve.
The Smile for M.E. gifts and handwritten card really helped me to feel seen and acknowledged. It was such a wonderful surprise.