Humans of ME/CFS

I miss the old me. The me that could easily knock out an hour of high intensity workout. The me that ran around playing fun games with my kids. The me that was sharp and articulate.
What happened to me?

In April 2016, after months of feeling utterly exhausted and numerous blood tests, I was diagnosed with ME/CFS. As a positive person I chose to resort to ‘mind over matter’, pushing myself, and remaining optimistic that a misdiagnosis had been made. Oh, how wrong I was!

July 2016 brought with it my crash in health and pains that I could only liken to shin splints, but not only in my legs but in my arms and back. Nerve pain caused my skin to feel like it was being scraped off at the lightest of touches and my brain was so foggy that I struggled to hold a conversation. Driving to work one sunny morning I could take no more. I was barely able to hold the bottom of the steering wheel. I broke down and sobbed, not just because of the pain and exhaustion, but because of the realization that I would never be ‘me’ again.

I have spent the last six months away from work learning to manage and cope with the never-ending list of symptoms. I weigh the pros and cons of taking a shower. I lay still like a statue for hours on end just to muster up the energy be able to go out for a few hours and socialize with friends.

I do feel I’m one of the lucky ones because I am able to lead a relatively fulfilling life. But the amount of activities I’ve had to sacrifice just to be able to keep myself on an even keel and remain in employment makes me feel so useless. I am still going through the grieving process for the me before ME. I cry to myself at the thought of being free from this body and just going for a run through the woods.

Thankfully, I have a great family and support system. My children were scared at first. They thought I was dying, so I told them I’m still their mom, but just a bit sloth like. I am gradually finding other things that I can enjoy and I have found meditation very beneficial.

People who are uneducated about ME/CFS have many opinions on what I could do to help myself and what is causing me to feel like I do—the most hurtful being that it’s all in my head. Let me tell you now, I don’t know anyone who would wish to feel the way I do on a daily basis. I really hope going forward we have more medical professionals advocating for us to push for the research this debilitating illness deserves.