The inevitable has happened, a combination of factors came into play and consequently my last few days have been quite difficult. It was not unexpected, in fact I knew towards the end that I was definitely facing a relapse.
The one thing that is guaranteed with this illness is that it will fluctuate. You can be assured that your feeling of good health will simply not last. Something will inevitably happen that causes you to go backwards. Acceptance of this makes the inevitable relapse easier to deal with. It sucks but at least you don’t feel shock.
On Friday night, my husband and myself went out for dinner with some friends. We had some initial confusion when we got there about numbers and after sitting down had to move to another table, then some of our friends were late and we didn’t order until about forty minutes after getting there. Service was also a little slow. All told this meant that it took a much longer time than normal to get to the end of our main course. The end of a main course is always my signal to leave. Staying any longer guarantees a collapse. Unfortunately the end of the main course that night was probably 20 minutes later than I usually stay for.
On Saturday morning, I woke up a little stiffer and sorer than normal and for the first time in weeks, I felt a sense of real fatigue. I can clearly differentiate between a sense of tiredness and exhaustion and a sense of fatigue. Tiredness and exhaustion can be overcome by proper sleep, fatigue can only be dealt with by rest and time. Consequently on Saturday, I rested all day and only went for a very short walk.
Sunday morning I felt like I had bounced back. I felt energised and able to get on with life again. As a result, my husband and myself drove to Worcester. We had a very gentle walk to a coffee shop. It was clear very quickly however that I wasn’t ready for a day out so we finished our coffee and went home. By the time we got home I was exhausted.
Very sadly at that point I heard our very elderly neighbour screaming in the garden. His also elderly partner had already called the paramedics. He had had a very bad fall in the garden and his partner was deeply shocked and upset. Consequently my husband and myself spent several hours with him and the paramedics. My husband helping out the paramedic who was initially alone and I tried to calm down his partner. This was both emotionally and physically exhausting. The paramedic even asked me to go out to his car to get a neck collar for him, that was fine but his car was parked down the road. For a split second I questioned whether it was wise for me to do this but realised that in this situation I didn’t matter so I went.
My husband drove our neighbour to the hospital to see his partner. While they were gone, I collapse on the sofa and slept. On their return however our neighbour joined us for dinner. He is a great guy and was deeply in shock, we didn’t like the idea of him being alone in that state. Unfortunately (and fortunately) he stayed for two hours. By the end he was much calmer and more relaxed – objective achieved. Unfortunately for me however it meant I had to sit for two hours on a chair and went to bed about an hour later than my good day bed time.
Put all my weekend together and the inevitable result was a relapse. I spoke to my M.E. Support Worker yesterday and we both agreed that although the aim is to avoid at all costs doing too much so it leads to a relapse, there will always be a time and a place where trying to avoid doing too much is probably a bad thing. Can you imagine if I had sat in my sofa hearing an elderly gentleman screaming and saying, “No, I’m not going to help him because I have used up all my activity points today”? That would be beyond wrong.
So although yesterday and today I am far more tired than I should be and in far more pain than I have been in for a significant amount of time, I know in my heart that it doesn’t matter. We did the right thing. Anyhow as my husband said, six weeks ago even half as much activity would have lead to a collapse and he would have had to effectively carry me to bed. The next day I would have been barely able to get out of bed. There was no collapse, never got to that point. Yes, yesterday I either lay on the sofa or lay in bed but even in those circumstances I managed to walk 0.45 of a mile. That would have been simply impossible not long ago.
So perhaps instead of looking at this relapse as something negative and scary, I should look at it as proof that I am making progress, that my body is beginning to heal itself. Yes I will have to continue to be incredibly careful about doing too much and I shall certainly not be extending any of my activities this week but I am not in as bad a state as I could have been. For that I am incredibly grateful.
There are fewer blogs at the moment because I am working on a large writing project and I must be careful with my energy expenditure!
See also my non M.E blog Me Opinionated! Really?