There is a constant knot in the pit of my stomach. Hidden in the dark murky place where emotions mix and churn as they evade logic and reason. Holding onto one end of the knot is the person I am now, tugging at the other end is the person I want to be. Accepting I have to let go of the person I want to be is in theory the pathway towards the chronic illness jackpot of psychological flexibility.
There are so many amazing people around the world working on ME/CFS research, advocacy and community support. The first site I will highlight is How to get on. Its incredibility informative especially for those in the USA and its also beautifully illustrated.
Two things can be true, I can empathise deeply with peoples loss and at the same time feel the sting of watching others mourn what has been lost to me for so long. Those of us who have been housebound for a while understand their grief and bewilderment that this could be their lives now, so small, so confined, everything tantalising just out of reach.
In the midst of such a world-wide crisis I’ve been struggling with how to put my own fears into perspective. To have any sense of objectivity about where my situation fits along the scale of – be kind to yourself, it’s a lot and get over yourself, you have so much to be grateful for.
There has never been a good time to have ME/CFS but there has definitely been less stressful times to have a chronic condition and an uncooperative immune system that continues to have an open door policy despite my objections.
When you have a chronic condition that separates you from the world there is enormous comfort in sameness. With so little energy it’s hard to know how to find a way to help others but we can help each other by sharing our stories.