Recently I’ve started to feel considerably better. Hours and even sometimes a whole day goes by where I don’t feel unwell. For a short period, I don’t feel tired and I’m in no pain. My brain feels fog free and I allow myself to think that I’m seriously on the mend.
Some interesting realities have started to emerge though that I feel are an early warning that I’m still not well. Although it is becoming harder to be a good girl and not dramatically increase my activity, it is also becoming more and more important that I carefully manage my activity level.
For months after getting M.E., I spent my days deprived of even vaguely enough energy to get through a day which involved bed and the sofa, even making myself a simple lunch for sometime seemed too much. As anyone who has ever had M.E. however will recognise, as soon as I went to bed my brain would pop into action, the adrenaline that had kept me going during the day would buzz around my body, making sleep an impossibility. I would awaken in the morning feeling in no way refreshed. Some nights I would sleep for maybe three or four disturbed hours.
Now, however, I am faced with a new interesting reality. Not everyday but often, it feels like my energy is bubbling up inside in me and to sit still and rest like I must is almost impossible. I want to buzz around the house doing everything I haven’t been able to do for months. I find I can walk for fifteen minutes without feeling like I can’t make it home.
While I feel so excited to be feeling so much better, there are repercussions that I could not have predicted. On the days where my energy seems uncontrollable, I need to control my activities. Therefore at night, with my energy unused, instead of adrenalin preventing me from sleeping, it is all that energy that normally would be used up by working or exercise. So I lie awake at night unable to sleep. I feel that if only I could go for a run or a long walk, sleep would come easily. The reality is though that a run or a long walk would have me back where I was a month ago. That is a reality I am not prepared to return to.
While a fifteen minute walk has no instant repercussions, in fact if anything it makes me foolishly feel proud, there are repercussions and those I must not allow myself to forget. This week I felt so good. I went for a walk everyday. 8 minutes to the river, sat for 10 minutes and then 8 minutes home. Monday to Thursday, I felt so good and so energised. Friday morning however I woke up feeling exhausted, like I had done far too much. Clearly I had over estimated how good I felt all week and Friday I paid for it.
There was no warning during the week that I was over-doing. I have learnt to read my body and notice the signals when I'm doing the wrong thing. It is possible however that the signals have changed and I must learn a brand new language in order to prevent boom and bust.
This morning I woke up feeling energised and pain free. I dressed and went to the kitchen. The dishwasher was full and needed to be emptied and refilled. Normally I avoid the dishwasher, unpredictably it is such a huge sap on my energy. To empty and refill it takes, I believe, about a third of my daily available energy. Having not done it for months however I decided to do it. It needed doing and my husband was about to go out for the day.
It shocked me that the simple process of emptying and refilling it (on a good energised day, first thing in the morning) should leave me exhausted and out of breath. My breakfast sat beside me and I struggled to have the energy to pick it up and eat it.
It is so easy to forget you are ill on a day where you don't feel it! It is all the more important consequently that on these days I force myself to sit and not do more than I would have done on a good day before I started to feel better. Only those that have been in this situation can grasp just how frustrating and dangerous this situation is.
Yes, I can begin to very slowly increase my activities. However, my support worker has warned that I can only increase one activity a week and only by 20% and I can only do the increase two or three times a week until my body can get used to it and then I can increase it on the other days. In other words, increasing your activity level to the point where on a really good day your energy is used up is months if not longer away. Increase it at a faster rate and you face the danger of Post Exertional Malaise and the inevitable relapse that would come along for the ride as well.
So, on medical advice, I have increased my night-time dose of Amitripyline so that I can sleep, for sleep remains the key to improving my health. I have stopped my day time dose however, as my pain level has decreased by so much. During the day, I must stick to my routine and structure my day sensibly. I cannot let my high energy levels dictate my activity level.
Given the choice between my difficulties of two months ago and my difficulties of today, of course there is no question that I prefer where I am now. On the other hand, I don't want to contemplate the disappointment I will feel if all this hard work and determination doesn't result in ever increasing progress. The disappointment I will feel if through foolishness and lack of vigilance, I allow myself to boom and bust, is not something I wish to feel.
So I feel my illness has now become a case of mind over matter. I have to learn to ignore all those signals that my body sends me to do more while at the same time trying to restabilise at this higher energy level.
This is a situation however most M.E. patients would give their back teeth for. The dilemma of having more energy than they know what to do with, for so many, is a distant memory. So I'm not complaining, I relish this new situation I find myself in.