My ME story
I contracted Covid which developed into meningitis in December 2021, I was blue lighted to hospital where a team of doctors were waiting for me and I spent some time on HDU. I can honestly say it was the scariest experience of my life. I thought that the ambulance journey was the last journey I would ever make, I thought I was going to die.
3 months after this I contracted Quincy (this is where abscesses grow on the tonsils and they can grow so much that they close airways). I again spent time in hospital.
I have also had numerous hospital admissions for abdominal pains. I was diagnosed with severe IBS. I have since discovered that I am lactose intolerant intolerant.
Medical professionals believe that this is what started my ME.
I knew something wasn’t right but I couldn’t put my finger on it, I was in pain daily and things felt more of a struggle than they did before. I stopped going for runs, going to the gym and going on long walks, previously I would go to the gym 4/5 times a week, run 10k regularly and regularly walk for 7-12 miles. All this stopped. When I finally sought medical advice, the turning point for me was that I could no longer put a duvet cover on as I lacked the energy to do so.
My GP referred me to the ME/CFS clinic, but waiting times were very long and I had to wait a year to be seen.
I reduced my hours at work as I could no longer work full time, I also had to adjust how I did my job due to constant exhaustion. I even passed out at work due to over exertion. Weekends were a total wipe out for me as I had to spend the whole weekend recovering from working.
In May 2025 I made the decision to buy a mobility scooter, following a city break to Madrid where I couldn’t walk very far so I basically spent the majority of my holiday sat at a hotel bar. I was also struggling with stairs and any type of physical activity. I began to feel totally useless. I was very emotional due to what was happening to my body and I felt totally out of control.
I contacted a private OT and I firmly believe that I contacted her at the right time, as I was very close to becoming bed bound due how much I was pushing myself to be ‘normal’ and how I used to be. My OT has been totally fantastic and she helped me out of a black hole.
I took 2 weeks off work on sick leave, I returned to work feeling no better. I worked a further 4 weeks then it was the 6 weeks holiday which was most certainly needed. I returned to work in September and I lasted a grand total of 2.5 hours before I had the biggest ME crash that I have ever had. I could not walk to my car without the support of two members of staff holding me up. By now I was a total emotional mess.
I have been off sick ever since.
I hired a stair lift for use at home and I use a stick when walking very short distances. I cannot stand for longer than a minute, I cannot walk for longer than a minute. On bad days I struggle to dress myself, I can no longer make a meal as I struggle with moving around, brain fog so I forget the next step, and I struggle with my grip. I also cannot do housework anymore. It’s a very grim situation.
However, with the help of my OT I have found my baseline and I am making very small additions to my baseline. I try to keep to the very small increments, however I often over exert which leads to PEM 1-2 days later. I have home visits from a physiotherapist monthly and she is working with me to help me to improve my core. I can definitely feel a difference from this. I am able to slight stretches daily for no longer than 3 minutes. This is a great improvement from where I was in September.
My whole life has changed drastically since ME. I have made adaptations in all elements of my life. I’m very lucky that I have a great support network around me. I would not be able to live on my own as I require too much assistance from others. That been said, ME has made me evaluate my life and remove things that are not helpful for me.