Living with Severe ME
Hi, I’m Katie (@katie_andm.e), I’m 17 and I live with severe ME. Since birth I have been easily susceptible to infections and viruses. At 13 I caught shingles and never recovered. I was diagnosed with Myalgic Encephalomyelitis, an illness affecting many systems causing a wide range of debilitating symptoms. Doing too much can cause huge setbacks due to the lack of energy production at a cellular level. There are no treatments, only pacing which is the act of staying within your energy limits. My illness fluctuated, at times managing full time school, at others unable to attend at all. Things were running normally until September 2020 when, after finally managing to start horse riding again, I fell. Whilst there were no severe injuries I experienced a lot of soft tissue damage. My body was left unable to recover properly due to the ME as well as worsening existing symptoms. I lost movement, muscle strength and feeling which I’m still slowly building. I spent 7 months in the hospital, the last 4 were completed on a neuro rehab ward learning movement. Unfortunately due to lack of understanding of ME I was pushed too hard. My illness became even more severe. Since leaving the hospital I’ve been able to pace more in a better environment and find professionals who truly understand the illness and realize the evidence of an organic disease. This has helped me know what’s happening and what I should do. I’m rarely able to get out of bed, due to the illness, its symptoms, and lack of an appropriate wheelchair. I can’t sit upright, stand or walk. There hasn’t been tremendous amounts of improvement. I’m still reliant on full time care and need help with most tasks. I can’t leave the house, I haven’t since coming home in April 2021. But I’ve adapted life to still do things I like. I appreciate the little things. I find joy for myself. This picture is not my every day, you can find me in the same room with the curtains closed alone doing some simple crafts. I’m sharing my journey on Instagram educating about ME and its debilitating reality. I am meeting amazing people and hopefully helping some feel less alone.