Humans of ME/CFS

It’s only been less than a year that I started exhibiting symptoms of ME/CFS but my life has changed dramatically. I have what is considered as mild ME/CFS. But, no matter how mild the doctors think the disease may be, it is no less debilitating. This thing that no one knows how to treat, what causes it, or how to manage; it affects me, my relationships, my work, and my way of life. It’s like you have to start again and forget what you know. So, those 33 years of learning how to be, think, and act; those habits, those personality traits that basically make you who you are; well, they are gone. You’re back to zero and have to think and plan differently. That, I find extremely hard to deal with.

I can live my life pretty normally, I’m lucky in that way. I can get out of bed. I can go to work. I can see my friends, but on a completely different level. Before the ME/CFS, I had plans to retrain as a teacher. I travelled a lot for my job. I could work a normal 36 hours week and still make plans in the evening. I could dance all night and I could write 500 words without any difficulty. But now, the muscle and inflammatory pains are constant and the insomnia has settled in. The headaches and the nausea are such a part of my daily routine that I barely notice anymore. The utter lack of energy is a given and the loss of cognitive faculties is terrifying. My memory, short and long term, is reducing at a scary pace. Sometimes, I can barely remember what I did that same morning.
When the doctors don’t have anything to help you, when your friends and family don’t understand what you’re going through, when your work that you are passionate about is suffering, when ME/CFS is treated as if it’s a mental health problem, you really become angry. But, what do to with that anger? It doesn’t help, does it? And tell you what, I don’t have the energy for it anyway. So, you find what feels good for you. You find people who can support you. You tell yourself this is a learning experience, a chance to rebuild on stronger foundations, a chance to strip away the rubbish and find a happier you. You do this despite the disease, despite the pains, despite the brain fog, and despite the fear for the future. Because the alternative is not worth thinking about, because I want to be furiously, defiantly, and beamingly happy.