I’ve been dreading writing this month’s post. After the euphoria of last month’s progress and the green light to start on gentle exercise again, the warnings about activity and ME are echoing round my head as I stumble down my grading chart and ponder what went wrong. ( I slid from 7.4 To 3.8 on my 1-10 scale)
The first half of the month continued well and it was a joy to stride out on gentle walks and celebrate my birthday (even if it was without the usual obligatory cake, chocolate and champagne/alcohol!)
Friends commented on how much better I seemed and after nine months it was a fabulous feeling to honestly confirm this as true.
The second half of June saw things start to unravel rapidly. (This can be see on my Grading graph but not really reflected in my mean Health Items chart)
To what extent this was due to increasing my activity is unclear. Summer viruses seem to be in abundance and my own feeling is that the flare up was more a result of me picking up another mild virus as my dip was accompanied with intermittent sneezing fits, streaming nose, sore throat and tissues galore! My glands were also more enlarged than normal.
I’ve still maintained my strict diet and supplements so the fact that I’ve reacted so badly to such a small virus is disappointing to say the least. I can’t be sure whether the extra activity was stretching my body to its limits and whether this could have been avoided.
I know it doesn’t take much for me to be knocked off course. I guess I need to remember that it wasn’t just occasional walks that had increased this month. I had already increased the amount of domestic activity: cleaning, shopping, gardening, my social life, and with it expectations of myself, friends and family that I was capable of doing so much more than of late.
Although all of this extra activity is fantastic psychologically, it’s hard to remember that with ME, good and bad stress all takes its toll on the body. It is SO hard when you’re feeling better to rest and change the rhythms of life that you feel comfortable with. It’s amazing how quickly I can slip from resting out of necessity to feeling lazy!
However, it makes sense that if I’m doing more I need to counter balance it with resting MORE whether I feel like it or not. I know diet, supplements and exercise are no cure for ME but it is all I have to try and re-balance the body the best I can to give myself a fighting chance. The problem about trying to keep a balance is that you don’t know how far you can tweak the balance until you tip off the scale!
It’s been a wake up call (again!) how quickly & easily I can slide down the scale after starting to feel so well. The scary part is not knowing how long the climb back up will be.
However, there are some positives this month:
1) My exercises have helped relieve my pins and needles in my arm
2) Sleep hasn’t been effected too much during this flare up
3) London School of Hygiene & Tropical Medicine are interested in my case and have been in touch to arrange blood samples for their ME CFS Blood Bank
4) I had a lovely birthday with family and friends!
So next month’s plan is to rest more, stabilise, then resume some gentle exercise and rest more so I can bring some better news for next month! Onwards and upwards!
Relevant links: Prof Julia Newton “Metabolism and the Muscles” Explaining why only some sufferers are exercise intolerant & finding that acid levels that are 20% higher in muscles of people with ME. www.youtube.com/watch?v=0UFTngBp7ek