On the 3rd May I posted a chronology of events to date in my journey with CFS/ME. A key development at that time was my visits to the gym and I had stopped taking the steroid each day. I was reporting good progress in building muscle that had all but disappeared and little or no pain as a result of ceasing the “steroid a day”. Well today, there is still good news and a little less good news. I am still going to the gym twice a week (back with my personal trainer for another 12 sessions) and since I started back on 9th March I have had almost 30 visits. I continue to build body strength and my energy levels have improved.
On the slightly negative side (and it is only “slightly”) the pains in my muscles returned after 6 weeks off my daily steroid and I was crippled each morning. Sleep was more broken than usual and getting out of bed was difficult. So I’m back on the single steroid and the pain has eased to a very bearable level.
I have also managed to play a round of golf (18 holes “on the hoof”) and that felt really good.
On Sunday 31st May I went along to a meeting of the Irish ME/CFS association where they had a guest speaker – Dr Abhijit Chaudhuri, Consultant Neurologist from the UK. Now as any of my regular readers will know, Neurologist are not on my list of “favourites” based on my experiences to date on this journey but Abhijit may have just changed all that.
There were about 60 of us in the room and we all had common traits, obvious before a word was spoken,
- Everyone was on time
- Everyone was attentive
- Everyone was in some sort of pain or discomfort
- Everyone was anxiously looking for answers or at least a word or signal that there was some hope for them
Dr Abhijit was a straight talker, if a little technical. But for a change, it was good to hear from someone who knew what he was talking about and was prepared to admit when he did not have the answer to certain issues. He made some interesting and sometime worrying points:
- The General Practitioners (Local GPs) in Ireland and the UK have little or no knowledge of the disease CSF/ME and very often have little interest in getting involved in diagnosis or treatment
- This lack of understanding stretches into the higher grades of the medical system with limited knowledge / investment in research / and a continuing difficulty at individual level to get a diagnosis.
- A viral infection remains as the most likely cause of the disease (there are some exceptions)
- The younger you are the more likely you are to recover
- The older you are the less likely the chance of full recovery unless you see substantial progress in the first two years
- Medication can help with symptoms but better management of your situation is the key to a better life with CFS/ME
I could have come away depressed and pessimistic about the future. I fall into the older category and wonder if I have done well enough in the first two years. I’m not sure about that but I am sure that I am in a much better position than many of those other souls in the room last Sunday morning.
I go to the Gym twice a week. I play golf from time to time. And later this morning I am going to a workshop called “Writing for Wellbeing” with a group of wonderfully creative, positive and warm individuals at the Carousel Writers Centre in Dublin 16