This week raises some important conversations around energy limiting conditions (ME/CFS, Long Covid/Post Viral Illness and Fibromyalgia).
Today is World Myalgic Encephalomyelitis (ME/CFS) Awareness Day and World Fibromyalgia Awareness Day, then throughout the week between 12th – 18th May is ME Awareness Week.
These conditions cause ongoing symptoms including feeling unwell or malaise, being exhausted/fatigued, pain, brain fog, breathlessness and poor sleep, whichcan affect all areas of people’s lives, but the symptoms are often hidden and not always well understood.
Our Symptom Management Service for people living with ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome), Long Covid/Post Viral Illness and Fibromyalgia, are now open and available to support you with any of the symptoms mentioned. You can find out more about our service and how to refer yourself on our webpage here: https://abuhb.nhs.wales/hospitals/a-z-of-services/symptom-management-service/
Below are some thoughts from residents who kindly shared their experiences using our services:
Fiona
“I have had ME for 27 years and do a lot of research, so am a 'know it all'! It was so refreshing and emotional to hear professionals who are so knowledgeable, empathetic and enthusiastic. I have great fear I am doing it all wrong, so this gives me a bit of confidence I can improve my situation and am sure others will feel the same.”
Susie
“It's been rough, but I’m glad I know what’s wrong now. I’m in pain all the time but the service has been great and helped me understand that it’s not all in my head. Every time I read things on the internet, I got different information but you gave me the right information to understand Fibromyalgia.”
David
“My work with the team has been amazing. Their understanding of my conditions and feelings has helped me greatly to slowly accept my new disability. Mindfulness and pacing of tasks have been highlighted and that has been tremendous.”
Lucy
“The energy management course has helped me think of energy management more as an equation that needs balancing and to consider where to save energy on tasks. I especially found the advice to keep an energy diary helpful.”
Later this year we’ll be featuring some stories from our residents living with these conditions.
We are also launching our co-production community to shape the service together. Please contact us if you’d like to be involved: Abb.symptommanagementservice@wales.nhs.uk
If you have any new or unexplained symptoms, please seek advice from your GP or 111.