Verity shared her story with us for 2019 Severe M.E. Day on Thursday 8 August, a day to honour the one in four children and adults with M.E. who are most severely affected.
I first developed M.E. at the age of 13. I am now 21. After my health quite rapidly declined, attending countless doctors’ appointments and taking many tests, I was eventually diagnosed.
I left school when I was 14 as I was too unwell to attend, and was home-schooled until I was 16. I was only home-schooled for 15 minutes twice a week as that's all I could manage. This has meant that I haven't been well enough to get any qualifications.
I have had M.E. for eight years and it has been severe for most of that time. It is currently at its worst right now and I have been house bound for the past two years (excluding hospital trips). I am dependent on others for most things and require a wheelchair and stairlift. I'm unable to wash my hair, make myself meals, eat or carry out simple tasks for myself. I sometimes need help to get out of bed and mobilise and struggle to sit up right for any length of time.
I used to be very active and used to dance and do figure skating but had to stop when I became ill. I enjoyed art but haven't been able to do any for a long time as I lack the strength to grip a pencil and find it painful. I also struggle a lot to concentrate on anything and find even watching TV or listening to music too much at times.
M.E. has affected my relationships with friends a lot. Before I became ill I had a big friendship group but I'm now only in contact with a few of them due to them finding it difficult to understand my condition. It is also very hard for me to stay in contact with friends/family as I struggle to find the energy to have conversations, speak on the phone or text.
My dad cares for me and has had to dramatically reduce his hours to do so. I struggle with severe exhaustion, pain and nausea. One of my most debilitating symptoms is extreme stomach pain and gastrointestinal issues, which I suffer from on a daily basis. It has had a great impact on my sleep and made it very difficult for me to eat and drink, which resulted in a seven-week hospital stay, being tube fed.
I'm very sensitive to sound and light and find brain fog extremely challenging. I have found there has been very little support for me and my carers. This was made worse by a great lack of understanding from medical professionals making it extremely difficult for me to access the right care.
If you have just been diagnosed or are struggling, my advice would be to take things day by day, pace yourself and listen to your body as much as you can.
If you are living with severe M.E., we are here to help. You may also find Emily Collingridge's comprehensive reference book Severe M.E./CFS: a guide to living helpful, with practical advice about mobility, staying comfortable, personal care, communication, symptom management, nutrition, working with professionals, emotional support and self-care.