Humans of ME/CFS
I first became unwell at the age of 28. I was working as a full-time midwife and came down with a virus while on holiday. I did not go to the doctor as I thought it was just a holiday bug. 3 months later, I ended up in the emergency room with slurred speech, blurred vision, unsteady gait, severe headache, and sensitivity to light. The symptoms were endless. All tests came back normal and I was sent home with a virus.
Things did not improve. I had been offered a job in Dubai and had been working and exercising hard prior to becoming ill. After many trips to the ER and with no outcome, I was eventually referred to a consultant physician who found fluid in my face and diagnosed post viral ME. I was advised a 2-year recovery which took 5 years in total.
Encephalitis meant I had a mild brain injury alongside a post viral illness. Unfortunately, the outcome of encephalitis also meant I developed bipolar disorder as an organic effect. I returned to work after a year and it was very apparent I was not myself. However, I had to try and resume normality at some stage.
After several years of relapses and challenges within the workplace, I left my career as a midwife and began temporary work as a support worker. During this period, I was diagnosed with Bipolar Affective Disorder. Due to having a post viral illness, it took many years to get my medication right as I am extremely insensitive to medication. I have had 2 major reactions to medication. One where I required resuscitating and a further toxicity which meant I was poisoned by the medication. I almost died twice due to my body not being able to cope with medications.
Then in November 2015, I developed a further post viral illness. My face became swollen as did my glands I was weak out of breath the symptoms are endless. This time it was a different virus. I do not know where to begin in describing the symptoms I face daily. weakness, headache, raised lymph glands, vertigo, tinnitus blurred vision, memory problems, difficulty listening and hearing. And that’s just a few of them.
I documented the illness second time in photographs as evidence the illness is REAL. I have to rest mainly at home. When I go out people do not see I am ill, but I pay for any activity I do when I am outside of my home. I try to keep this to myself for fear of being judged. I have lost friendships relationships and experiences.
However, I am currently managing 24 hours a week at work and hope to in the future become a mental health advocate. I also love to sing and will be performing in a pantomime this year! I set goals, albeit small ones. I have made good friends and I am happy. I love life. All I ask is to be believed.