Hi I’m Clare!
I was diagnosed with Chronic Fatigue Syndrome (CFS)/Myalgic Encephalomyelitis (M.E.) in 2005 when I had just started secondary school. I went from an active energetic girl, who almost always had her head stuck in a book, to being almost bed bound for 3-4 years whilst studying for my GCSE, and struggling to read much more than a few sentences, let alone a whole book.
I improved in 2009, and for 2 years was able to do so many things I just hadn’t been able to, but my life was still limited. I could walk quite a bit, socialise and do a bit of study but it was still quite a balancing act, however to me it was a freedom I hadn’t had for four years and so I loved every minute.
I started my degree part-time with The Open University in 2010, and although my health slowly deteriorated again, (ok, I admit rather rapidly at times!) I was determined to finish my degree and in 2017 I did just that, graduating with a 2:1 BSc (hons) Computing & Information Technology and Business!
In 2019 I gained the additional diagnosis of hypermobility, and with it came some support and advice to help me manage the condition. Physiotherapy began and to this day continues, while waiting for help from specialists. I also have autonomic dysfunction, in all likelihood Postural Tachycardia Syndrome, although this is still very much under investigation, and my doctors are trying to find ways to manage my symptoms while finding out exactly what the cause is.
I’m now trying to find my way in a life where energy is a precious resource, whereby even seemingly easy tasks can be an uphill struggle. Currently I am unable to work as I can’t leave the house on my own, and I’d only be able to manage a maximum of 2 hours a day (spread across the day with rest breaks), even that might be too much and cause my health to worsen.
This blog is my way of sharing tips and tricks for living with chronic illness, sharing my journey and generally a way of helping me cope; giving me something to do which doesn’t take too much of my little energy supply, while also maintaining some of the skills I learned during my degree and hopefully building on them. It includes the highs and lows of living within the limits dictated by chronic illness.