What do you think helped or inspired you during your recovery?
I found it inspiring when I came across people who had recovered from CFS/ME. One of the first things that I remember helping to lift me up during the hardest moments of my symptoms was learning to knit. Mum taught me the basic stitches and I enjoyed the process of watching the material gradually forming into the shape of a scarf, then a hat and shortly after that I managed to make a burgundy jumper. At the start of the illness, learning to knit took my mind off all of the things that I wanted to do but couldn’t. There was a rewarding feeling in the making process. I could pick up a knitting project and put it down as my energy allowed.
Before I was diagnosed I was really active and enjoyed loads of outdoor activities like hill walking, cycling and running. When the chronic fatigue hit me after a severe case of glandular fever I was only able to walk to the post box at the end of the short road and back, and that was on a good day. Over time this gradually improved and I was able to extend the walk to another point just beyond. Setting small goals helped but I found that it was also important to listen to my body and judge what I could feasibly manage that particular day. I kept myself determined that I was going to get better.
I came across a book called Beat Fatigue with Yoga which inspired me to give yoga a try. At that stage I was looking for anything to feel back to my “normal” self. By starting with gradual yoga routines this helped to ease my overall body pain, and reduce the fuzzy head. I started slowly by managing short 10 minute routines. Over time I was able to attend a class during the day and then eventually I could manage an evening class. This was a huge achievement! Over the years this progressed and I was able to gradually gain my energy back even further. I am now able to enjoy outdoor activities that I always loved and have a huge appreciation for being able to manage the day to day things that can so easily be taken for granted. It took me four years before I was able to gradually phase these things back in again. I would say that by turning to creativity and yoga, and very gradually phasing these in, as and when the energy was there, this helped me during the worst of my symptoms.
What kind of support did you experience?
I had to move back home which is another factor that aided my recovery. My parents were both a brilliant support and would chat things out with me when I was having a down moment about my situation. They witnessed the complete crash in my energy and my inability to focus or concentrate on a group conversation, and many day to day activities that people take for granted. For example, going to work, meeting a friend for coffee, or going to a gym class. I am really lucky to have an incredibly supportive family and that support was invaluable.
By writing about how I was getting on, this allowed me to track the progress that I was making over the years. I realised that I needed to inspire, encourage and support myself through this situation. I needed to focus on all of the positives that were around me. This allowed me to gradually change my mindset to the situation. I was determined that I was going to get better. It can be hard as people don’t always understand what you are going through, but it’s finding the light and turning to whatever support network is there for you.
I had good friends who met with me during the harder times and I managed to reconnect with people too. So actually in a funny way, it has allowed me to be better at keeping in touch with some really great friends. At first when I moved home it was extremely isolating because I was unable to get out and meet people due to the lack of energy. It was lovely when a friend was able to visit me during those initial housebound stages.
I tried some alternative therapies. Shiatsu appointments in particular helped to sooth the pain and this allowed me to sleep better the night after. Having someone listen to how I was feeling, and to acknowledge the symptoms that I was experiencing was beneficial too.
Fèis Rois, the music organisation that I worked with over four years were really supportive. Fiona, the Chief Executive, was a brilliant support providing me with an opportunity to volunteer in the initial stages, when I needed to ease into working a couple of hours a day. I believe the feeling of being able to contribute positively to the surrounding community also helped my recovery.
Did you have a favourite song, book or podcast during your recovery time?
Podcast: I enjoyed listening to Desert Island Discs
Song: I remember hearing Keep your head up by Ben Howard in the early stages and when the chorus came on I realised it was the same attitude and mindset that I was trying to channel. John Martyn albums. I could probably go on..
Reading is something that I had always enjoyed although I was unable to read much in the first year due to the fuzzy head and lack of concentration. Instead I would look at craft magazines such as Mollie Makes which inspired me to start making things. Initially I enjoyed listening to audio books.
I love music and it has always been a big part of my life. I’ve played the fiddle (violin) since I was little. Before my diagnosis I was teaching and performing for ceilidh dances and events with various musical friends. When I was affected with the Chronic Fatigue I was light and noise sensitive and my head was extremely sore but over a period of time I was able to play again and the music came back to me which felt great. I believe that music can boost our energy levels, and has a positive effect on our mental and emotional well-being.
Is there any advice that you would like to give to someone going through M.E.?
You are not alone. There are lots of people around the world who are going through a similar experience. Your path in life does not always go the way you might think and that’s okay. It can actually be for the better, although it can take a while for that mindset to switch on.
What I found useful in keeping sane was to distract myself with the positives around me. By trying a short yoga routine, enjoying the beauty of nature, the support of a loved one, baking a cake if the energy allows, sitting outside if possible or enjoying an accessible creative hobby can allow the mind to ease or distract itself mildly from your discomfort when you are going through the worst of the symptoms.
Have you learnt anything that otherwise you would not have had an awareness of?
Firstly, I don’t think I would have discovered yoga and the power of the mind-body connection. I believe that yoga has the ability to help with the healing process. I may not have discovered knitting and other textile related hobbies that I got into during that period, which I really enjoyed. There is a therapeutic power in being creative and making something with your hands.
It has taught me a lot. It has taught me that you can find so many positives in a hard situation. It has made me realise the strength in patience. It has allowed me to empathise with people who share a similar experience or another hardship. It has shown me the benefits of taking each day at a time and to enjoy and appreciate every day. It has made me realise that it is important never to take your health for granted. I have an even greater sense of appreciation and enjoyment for the small things.