Humans of ME/CFS

Initially, 12 years ago ME was suggested to me by a GP when I was ill with extreme fatigue, palpitations, shortness of breath, etc., the year after I had my son. Blood tests showed nothing obvious. And I rested, ate healthy and after a year or so it eased, and there would be periods then where I would “crash” and be very sick and bedridden for a few days. But then I would be normally active in between and recover fine. My friends knew me as the one always on the go. I liked to get out and make the most of life and enjoyed the outdoors with my two kids.

Three years ago, I noticed some weird symptoms, shooting electric pains in my hands, numbness, migraines, electric shock pains down my shoulder and arms, bladder problems, severe nausea, vertigo, dizziness, room swaying and IBS. The GP dismissed it as my being a stressed/depressed single mother–definitely not so! It got even worse with muscle spasms, bone-crushing pain that I never thought possible unless my legs where crushed under an articulated truck and muscles that were on fire and felt like something was crawling in them. I lost my sense of smell and taste for months, my fingers where hard to control, etc. It was horrific.

I had to insist the GP refer me to a neurologist since I was so sick and being left in pain and had to pay to be seen quickly. The MRI and blood test results showed nothing, and the neurologist dismissed me, saying there was not much he could do. I cried my eyes out. I did get some medication to help with the spasms and ease the pain for a while, but it came back at a later stage.

Over the last three years, the ME has improved and then crashed and worsened every few months, each time leaving me worse than before, this time causing me to leave work. I will never forget the torture every day in that job of trying to put one foot in front of the other and keep working and not fall down each step–of collapsing and being wheeled out in a wheelchair. I would sleep for weeks comatose. I have gone to Accident and Emergency Services for help in desperation….none there. I cried my eyes out at being so sick and getting no help again. There are no specialists in Ireland, not one consultant. I had to become my own doctor and researcher on top of being horrifically ill. Eventually, a Facebook support group led me to an internal medicine specialist whose care I’m now in, I have to pay privately for this.

ME robbed my kids of a fun-loving mother in her prime, made me a prisoner in my body in my bed, has us on the breadline, makes me cry at times with a level of pain and sickness I only imagined one would experience close to death. How is it possible not to have any treatment after all these years to help us? Throughout, I’m always strong and positive, but boy does ME test your limits