I trained as a graphic designer and ran my own design company for many years which led me into teaching art and design for many years. Whilst living in the USA I taught sensorial subjects to early years. On returning to the UK I bought and owned a Montessori children’s day nursery and lectured on the side in art, design and professional practice. This led me to being asked to manage, and turn around, many challenging and difficult nurseries that were in very low income areas of the UK. I loved trying to help children and families overcome adversity, and this led to my career evolving into social work. At this time in my career I was working with very challenging child abuse cases and trafficked young girls as well as teaching students on social work courses at the local university. In between all this I worked on some challenging cases in Africa and the Middle East. I loved my career, which spanned thirty plus years but it was very challenging and I was a perfectionist. Never having any validation from home, I sought validation in my career.
Throughout my life I had always been exhausted but I always put it down to long hours and difficult work. I retired in 2015 and bang, in 2016 I had what I thought was a breakdown but I never recovered. I had had severe glandular fever (Epstein Barr Virus) aged 14 years where I was bedridden for three plus months. The breakdown rendered me bedridden and housebound. I don’t remember much of those two years, comatose at home, alone with no help and couldn’t make food or eat it; I lost 2 stone/28lbs and I thought I was slowly dying. I remember thinking I saw the other side. In 2018 my GP diagnosed Myalgic Encephalomyelitis (ME) and referred me to our local ME Clinic where the diagnosis was confirmed and I commenced monthly zoom therapy, one a month for 12 months which got me to a point where I could sit up in bed for 30mins and as therapy went on I could sit downstairs for 2 hours. It took a lot of hard work on my part and there were many times I wanted to give up.
Since then I have had more therapy and now I’m having monthly zoom therapy with doctor at my local fatigue clinic. Again this is hard work. Since 2018 nothing much has changed physically but mentally I have come to a place of acceptance and I don’t fight my illness anymore. An activity will put me to bed for days with Post Exertional Malaise (PEM). The fatigue is so debilitating it’s unreal; it is absolutely nothing like being “tired”, it’s all consuming and will include nausea, headache, light and sound sensitivity. I am in pain 24/7 and wear opioid pan patches and take pain medication. I have acute tinnitus, myclonic jerks, anxiety, depression, head sweats, poor swallowing, insomnia, brain fog, poor memory and concentration and complex post traumatic stress disorder (cPTSD). I am still housebound and 80% bedridden. Friends do my day to day shopping and I have a carer and cleaner and am on benefits. I never feel well, I never feel ok; everyday is a struggle and there is little help and currently no cure. I didn’t expect my retirement to be this way but I am still luckier than some. There are days that I sleep through and can remember nothing about them, but that’s ok because that’s what my body and brain need at the time. If I fight what my body is asking for it makes my symptoms worse and I pay for it with the PEM and increased symptoms.
There is so much more to my story, but let’s just end with any form of stress, especially emotional, puts me into PEM immediately with raised symptoms for weeks, so endeavour to keep my life stress free.