Last week to my surprise and utter disappointment, I was fatigued. My fatigue was such that I feel like I have spent the last eight days in a haze and last Monday was just a moment ago. The hours pass too quickly for my drug altered mind. I knew on the Sunday before the Monday, that I was tired and I had probably, maybe, most definitely, pushed myself too much in the previous week. I had subsequently factored that into my Monday. Monday would be a rest day.
Monday was indeed a rest day, as was the Tuesday and Wednesday, and now we are back to one activity a day. To me those days last week, were more than rest days, they were days spent feeling ill barely moving. Scared that I was perpetuating this bastard, and worried that this sort of behaviour breeds more of this sort of behaviour, I forced myself to do some activity outside the compound. During each activity, I felt under the weather and experienced withdrawals from my bed. It took over. I spent the rest of the week doing the odd activity, but everything was a struggle. If I pushed myself in any activity, I paid for it after. If you feel like I have told you this before, it is because I have. I am a broken record.
I felt like I had regressed. My energy levels were reminiscent of me four weeks ago. I have been told that it will take a while for the fatigue to subside, but I expected my recovery to be made up of gradual improvements. I did not expect and nor do I want troughs in my peak.
The troughs are grossly unfair. I so much want to be able to improve. I can just about handle the speed as long as I am not reverse. I want to be able to tell people that I have done more with my day than the dishes. I want to have done more in the day than my dishes. I want to be able to go out for lunch and not follow it with a four hour lie down and that is on a good day. I do not want to be predictable. Two weeks ago, I felt like I was getting there. Last week, I did not. Today, I am still climbing out the trough.
Am I making it worse? I sincerely hope not, but then, if I were making it up, at least I would be better. I beat myself up over it and that is something I promised not to do. My crashes are not my definition of relaxation station, in case you thought I spent them in clouds that smell like lavender. They are fraught with guilt, frustration and waiting, and not sleep. I am a broken record. Napping would be preferable. Last week, I actually yearned for my post treatment nap, so popular during last season’s PADIMAC trial.
Most of all, I miss my brain function. I want to sit down and complete a task. I want to be able to recount more than what I have read in the column of shame. I want to follow every conversation I have. I feel like I am missing something great. Right now, there is no tangible achievement in my days and that makes things go terribly quickly. It a loss.
Not one to sit on my arse about this, I did seek some advice. The Macmillan booklet on the issue of drug induced fatigue recommends keeping a chart of the peaks and troughs to assist one in planning their days around them. I suggested that people did it so they could look back and identify improvements to give them hope. I for one struggle to recall how I was on any given day because the fatigue is not just about being tired, it is everything I said above and more. Memory lapses make me even more of a broken record. Anyway, I think the chart is a marvellous idea, I am just too goddamn tired to complete it.
I’m not where I was at the start of August, but then I am not where I was in May either. I want to be able to offer more. I want to change the record. I am bored of it and I am bored of people telling me it will get better.
Clearly, I need some work on my patience.
EJB x
