My new reality is living with grim sensations day and night, realising that it is possible that there will not be any relief. Medication helps to mask some of the symptoms but remembering how absolutely unbearable it was before this new medication makes me realise that this is a better place to be. So now I must learn to celebrate this situation. Doing stuff will make it worse and can put me on a lower level of capability permanently so I’m learning acceptance of where I am. It is not a bad place to be and could be much worse. Unfortunately this does mean less outings and fun but making the most of the times I can get out. Further learning that moving a bit less and not being able to even doing 5 minutes of weeding instead of 10 minutes is just fine.

Life has become a fine balance of rest and minimal activity within the parameters of my current ME level. I was told this week the unwelcome news by my ME consultant that the deterioration can happen to women with ME of my age. Fab how the news does not improve with not a huge amount of good news on the horizon.

I was surprised this week by my ME consultant’s barely contained excitement that the new medication works for a while before having to up the dose again and again. Plus his enthusiasm that I can work through the “medication family” of the drug that works (for a while), fooling my body for a bit. On reflection I can see that I also need to be happy with these positives. In the past I have looked to totally getting rid of pain and other symptoms, but the world is not perfect.

Being healthy is something that I always took for granted. I have now lived for more than a third of my adult life with ME. If we get sick, we assume that we have a chance of getting better.  I did not expect to become disabled and never expected to become sick with a chronic illness at the age of 41. It’s a wee bit unfair as well that it’s an illness that is only just now starting to be researched but with no cure, although there is the possibility of a temporary lessening of symptoms through powerful drugs currently going through clinical trials.