When I was 33 I slowly started feeling heavier and getting pains in my back and legs. I was working as a supply teacher at the time and day by day it was harder and harder to last the day. I could work less and less until I was told not to return. Swiftly after that I was given my first diagnosis of fibromyalgia, so I had a diagnosis for the pain, fatigue, brain fog and more.
I had two children to look after in addition to caring for my mum but as time went on I was able to do less and less. People needed to help me more and more with basic tasks such as picking up the kids and I also had to stop baking, something that was my passion, because it was just too painful and exhausting.
3 years after my first diagnosis the fatigue seemed to overwhelm the pain and I was sent to the rheumatologist who confirmed my ME diagnosis. I know I am one of the lucky ones as doctors have listened to me and believed what I was telling them. My ME diagnosis was a lot harder to come to terms with compared to my fibro diagnosis but even now I’m not entirely sure why. Coming on top of depression, anxiety, PTSD (which I had suffered for years) and the fibro and found it very hard going. I only managed to get through it due to my support system and it is something I still rely on every day.
The biggest part of my support system is my husband and two sons who support me both emotionally and physically. I am no longer able to physically care for my mum but we are able to support each other emotionally every day. I also have an amazing online support system which was formed by getting to know others in similar situations. This all helps me deal with good days, bad days and worse days.
My life has evolved into something which involves finding solutions to ever changing difficulties, from not being able to stand long enough to make my own lunch to needing a wheelchair when I leave the house. These solutions involve everything from simply having lunch pre-made every day to buying and using an electric wheelchair. I used to feel ashamed of these things but once I found acceptance I found a kind of peace.
When my youngest son was 10 he got a persistent cough and after that he started struggling with doing physical things which also started having an impact on his mood. We were lucky that again, the doctors listened, and he also received an ME diagnosis. We have adapted again using his and my knowledge and experience with his school being very supportive. This has given him an improvement in his day today life but he does still struggle, often trying to hide it for my benefit. As a family we have found a way to communicate and function, often pre-empting crashes and issues and providing support for each other. I have learned that ME doesn’t just affect the individual but it also affects the people around that individual so openness, compassion and communication is key for everyone.