Two years ago, I felt healthy and energetic. I could exercise regularly and eat whatever I wanted. Two years ago, I was working full time in a job I never dreamed of but that I learnt to love. Two years ago, I was also preparing my wedding, doing pretty much everything from scratch, from the food to our wedding rings. I was doing all this while raising a 3 year-old bouncing with life. Today is very different.
Most days I am crushed with fatigue, or pain, or both. Now, emptying the dishwasher is my exercise and work seems like a distant fantasy. I can rarely walk my child to school and have to leave most of the house work to my husband. And yet, despite all the ailments of the disease, I am now in a much better place than I was two years ago. Before I crashed in 2017 and slipped into the arms of ME/CFS, I was riddled with anxieties so strong I sometimes thought dying would be a relief. These emotions would take the best out of me. I didn’t like myself and was dissatisfied with how I was a mother, a partner, a daughter or a sister. I was longing for something else, for more stuff, for more of an “Instagram-perfect-life”. I just didn’t seem to be able to get fulfilled. Then, I crashed. At first I resisted the diagnosis of ME/CFS and its toll on my life. I was going to beat it. However, at the time I wasn’t realising that by resisting it, I was wasting precious energy. With time, I surrendered and slowed down. That’s when I got to understand that the life I was leading until then, wasn’t one for me. It wasn’t addressing my very own needs, instead it seemed to address the ones of a consumerist world.
The next step was then to discover what my needs truly were. It’s amazing how many doors boredom can open. Desperate to occupy myself, I started knitting and sewing again. After I finished a first scarf, I felt I’d conquered the Himalayas.
I simply was overjoyed and pleased with myself. That’s when I knew I was heading in the right direction. See, I’d always been creative but lost sight of this trait of my personality. I had the belief that creativity had deserted me. Although it was fast asleep, it was still there needing a wee nudge. And the more creative I was with my hands, the more I became creative with my mind. New thought processes and perspectives to embrace were appearing. If until then, there was room only for a harsh, self deprecating voice, my mindset was definitely shifting. I was able to choose from pessimism, optimism or realism. By slowing down, I was giving the opportunity for other inner voices to surface. Some old, some new, some expected, some surprising, some funny, some in desperate need of compassion. Thanks to mindfulness, some meaningful encounters and unconditional support from my husband, I learnt not only to give the time and the space to these emotions to surface but also to accept them. With acceptance came kindness towards myself.
I still struggle at times with dark thoughts. I still have days when I feel scared, bored or frustrated. The difference is that now I recognise that these feelings don’t define me, therefore it’s easier to accept them for what there are: fleeting moments.
Although, my relationship with my sickness remains complex, the war I seemed to have been leading against my body has ceased. I understand now that my body isn’t working against me but instead doing its very best to get better.
Today, I no longer feel constantly on edge, instead I feel grounded. Today, I’m no longer longing for happiness but I now notice the little joys life keep bringing and I feel content. Today, I woke up not knowing how to make it through the day but I looked at the journey I made since my diagnosis and I knew I would be ok. Today, I am grateful that ME/CFS is helping me to heal my mind.