By Rachel White
Before I developed Myalgic Encephalomyelitis, I was probably the healthiest I had been. In then years coming up to it, I rediscovered my love for walking, yoga and the occasional swim after work. I wasn’t over-doing it, just in moderation and at the same time, made healthier diet choices. I was in a successful career as a Immunisation Nurse working with 0-19 year olds and ran a needle-phobia clinic helping the ones that were afraid!
I was active in the Church and led Sunday School and Youth Club and enjoyed many gigs, cinema trips, holidays and eating out. In late 2019, I went on holiday to Copenhagen and whilst I was there I had what I now know was my very first symptom of M.E. I had been out all day sight-seeing and on my return I developed the most excruciating headache that I have ever had. It was horrendous! Thankfully I had some co-codamol with me. I took some and had to go straight to bed for the rest of the evening.
I woke up the next day feeling much better but with a very slight hint of fatigue. I put it down to dehydration and got on with the day. On my return home, I got back to my home routine and back to work. But a couple of weeks later I developed an unknown Virus with a high fever and I felt terrible. I had never experienced a virus like it. My ears felt pressured like I was still on the Copenhagen airplane and I had sinus issues and nerve issues, daily headaches and a fatigue that I had never experienced before. The antibiotics didn’t work and as a consequence I went off work and unfortunately never returned.
It took 2.5 years to get a M.E diagnosis and 1.5 years for someone to do bloodwork which actually found some other issues that needed to be addressed. In the end these were only carried out because I had gone privately to get them done. I’m now pretty much house bound, the fatigue is relentless.
A daily fight to get through the day and still feel like a human at the end of it is my goal. There are so, so many different symptoms – Cognitive issues, ear issues, nerve issues, gut issues, breathing issues, pain in various places, everything is slowed down. Meanwhile the world about you just carries on. Fast moving, fast paced and plentiful.
Losing my career was one of the hardest things to deal with. I had changed careers quite late in life and qualified at the age of 33 and developed M.E at 39 so it seemed so short-lived. I’m now 41, with no children or husband (yet!). These things are the hardest things to deal with. There is a grief that takes place over a past life and an acceptance about the new one that you now find myself in.
My faith is the biggest thing that has really helped me through this season. It’s my faith that gives me purpose in each new day. A hope that maybe today will be a much better day. It helps me to be thankful and know that even in suffering there is always hope. Encouraging people is something that has always given me joy and being able to do that whilst in a place of suffering is confirmation that I am still in the fight and I am not in it alone!
Anyone who is suffering with ME/CFS or Long Covid is a hero in my eyes. Keep being brave. There is always HOPE!
N.B. A person's faith can be a significant source of strength for individuals dealing with illness, however this may or may not be helpful for others with ME/CFS.
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