Yoga, My Bed & M.E.
Nobody wants to get sick, nobody wants their life to feel snatched away from them and to be punished for trying to live and to do things. Welcome to the world of M.E.
I’m Donna. I became ill at the age of 12: it started as the typical common cold, which went onto the ‘flu and didn’t go. It went to glandular fever and that’s when things took a turn for the worst. The doctor told me it would take 4-6 weeks to get back to normal and to rest for a couple of weeks before going back to school. Those couple of weeks I slept: I couldn’t keep my eyes open and I was too tired to even talk. It soon became clear that I wouldn’t be well enough after the two weeks, but my family made me try to get back into a routine on a Monday morning. I had a 40-minute walk from home to school and I lasted that one day before I couldn’t get out of bed on the Tuesday morning; I ended up bedridden for the rest of the week. This was then my life for the next two years: fighting my body, overdoing it, collapsing, being housebound, doctors’ appointments, doctors not believing me, welfare making me go to school, school sending me home as I was too ill to be there, and all I wanted was to just sleep and cry. I was pulled in every direction by family, doctors, school, and not one of them seemed to want to listen or believe what I had to say. I truly believe that if I was allowed to rest completely at the start of glandular fever, with no pressure of forcing my damaged body to go to school, I might not have developed M.E., but who knows. Now all that’s left of my teen years is bad memories of being scared by every doorbell ring, having anxiety attacks with every doctor’s appointment and being told “there’s nothing wrong with you”, feeling so alone when my own family didn’t believe me and dragged me out of bed to get me to school, no friends and no social life to look back on. I am 37 now. I have lived most of my life with M.E.; it has won many battles, but it hasn’t won the war. After putting my own healing steps in place from late teenage years, I was able to manage my M.E., a working life as a make-up artist and being a mum for over 13 years, until I hit the biggest relapse ever at the start of 2016. It hit me out of the blue and I was back to housebound, but this time I found my purpose and started my business – Yoga, My Bed & M.E. – that year from my bed and now I am helping M.E. Warriors all around the world with wellbeing and yoga.
M.E. symptoms for me were the whole-body weakness, like I was made from jelly, the hours I could sleep and still be tired, freezing cold in a heatwave. I had no energy to talk. I couldn’t write as I had no strength to clasp a pen. I felt sick most days, and most nights I would cry with muscle aches and pains in my legs.
It was with the leg pains I started stretching in my bed, doing forward bends and legs up the wall. I didn’t know it was yoga at the time, I just knew that stretching and holding certain poses helped relieve my pains, so I could get some relief and rest. My mum told me I should try yoga for its amazing health benefits, so I went and tried yoga DVDs, which were all too fitness-based and too much for my weak body: they were too long, too intense, too aerobic, and always left me back bedridden for weeks after, but I loved each of the poses and the feeling of stretching aches and the relief they brought to my body, so I decided to create my own yoga which now, many years later, has become my life purpose and successful business, sharing my story and knowledge of yoga and wellbeing with other M.E. warriors.
Here are my top tips on how you can incorporate gentle yoga into your life with M.E.
- Don’t think you have to get on a mat; stand up, lift your arms, stand on your head or do a 45-minute yoga practice to get yoga benefits. What we see online, what we are led to believe yoga is, is a form of exercise and fitness, and whilst there are forms of dynamic yoga specifically for that, yoga to me is what you need yoga to be – to be able to work yoga around your M.E., not your illness around the yoga. Yoga can be carried out on a chair, the sofa or your bed.
- Do yoga poses as and when you need them. One pose in the morning can help release stiffness, a pose at lunch can help your circulation and a pose before sleep can help you drift off more comfortably to sleep. Carrying out poses throughout the day can help reduce the build-up of muscle and nervous tension, prevent fatigue, aches and pains from becoming worse and keep your lymph and blood flow circulating around the body to help with your immune system and keeping blood healthy.
- Listen to your body: it will gently tell you that it needs to stretch the aches and pains by making us fidget, not being able to get comfortable – our body is in constant communication with us. You will naturally know the way your body wants to stretch and move; pay attention to the cries of your body talking to you throughout the day. Yoga shouldn’t be painful, but you will feel the stretches in your muscles, especially if you’re not very flexible; this isn’t a sign you can’t practise yoga, it’s a sign your body needs yoga. Always carry out the poses slowly and gently, never force your body into any pose it doesn’t want to do. If you experience any sharp pain, electric-type pain, or tearing pain, stop immediately and come out of the pose: it’s a sign your body isn’t ready for that pose.
- Yoga on your bed! As long as you have a firm mattress, carrying out small, gentle and short yoga poses can help those of us who are bedridden or rest on our beds for long periods of time, without causing us P.E.M. We can even practise yoga on bad days, by focusing on our breathing, using pillows and rolled-up blankets to help support our bodies. Placing pillows under your knees while in Savasana (corpse pose, i.e. lying on your back naturally) helps give support to your lower back, preventing back ache.
No matter how much you do or don’t do, it’s enough. Our body is different day to day and so is M.E., so always go gently, never push your limits and lastly, enjoy yoga; it’s there to make your body happy.