Recovery, or learning to live with it?

One of the things I have struggled with most, particularly when the illness passed the 6 month mark, is whether I should be focussed on making a full recovery, or whether I needed to accept I had a long term condition which I should start adapting my life around. It might not seem like a…

Multi treatment approach – diet and nutrition, part two

So I had my new, possibly dodgy, supplements to try, now I needed to sort my diet out. I started reading books and blogs again, and naturally got a bit lost in all the differing, and conflicting, advice. Some swore by a vegan whole food diet, others a paleo ketogenic diet, with lots in between….

Multi treatment approach: diet and nutrition, part one

Good God where to start with this subject. I think of all the things I have tried, and all the ‘treatment’ options available, diet and nutrition remain the areas I have probably read the most about, spent the most on, and tried the most of, in terms of diet types and supplements. I suppose it…

Multi treatment approach: exercise

Within the ME/CFS community, exercise is probably the most hotly debated form of ‘treatment’. I mentioned the PACE trial in a previous post, which recommended CBT. It also recommended something called Graded Exercise Therapy, GET, which basically advises people to understand their baseline and make incremental improvements over a series of weeks and months. The…

Multi treatment approach: neurological

ME/CFS is a diagnosis of exclusion. Symptoms include: Extreme fatigue, which isn’t improved by rest Post Exertional Malaise (basically your body responds terribly to any kind of exertion. And I’m not talking running 5 miles – simply brushing your teeth can lead to a day or two in bed for some people) Cognitive dysfunction (I…

Multi treatment approach: stress management

Whilst it is absolutely clear that ME/CFS is very much a physiological illness, rather than a psychological one (as it was once thought), there is a real risk of developing depression alongside it, due to the fact you have more than likely gone from a previously healthy, active person, to someone who has to choose…

Coming to terms with a chronic illness

At some point, around 9 months in, I started to accept the fact that I had a chronic illness (although not the fact I wouldn’t recover from it). I was diagnosed with chronic fatigue syndrome, also known as myalgic encephalomyelitis (I’ll refer to it as ME/CFS from now on, and can’t be bothered with the…

A few words on ‘fatigue’

Working for a safety critical company you hear it used in a different context, for people being over tired and not suitable for work. People also use it interchangeably with the word ‘tired’ and before my illness I probably wouldn’t have given that much thought. When I try to explain to people what my illness…

Adjusting to my new life

Several months in, with no real diagnosis but ongoing symptoms, I am back at work and about to go on a long haul trip which was booked before I got sick. I was heading to Anna Maria, a beautiful island in Florida with my husband, the kids and my mum. After weeks of worrying about…

Phase two – trying All The Things

A few months in and after all tests had been exhuasted and I had been sent home to recover, I started to research alternative therapies. I found I wasn’t very good at sitting around waiting to get better, I had to be doing something, trying something, to increase my chances of getting better. I read…