I may have said in my previous blog that I was going to write two blogs about my brain function, but I have since decided that that would be a disservice. We all need another sorry tale about how hard my life is, before I can show you that I am the bravest person I know, who was born in the 24 May 1984. The logic behind my decision is sound, if I do say so myself. Part I took on one aspect of my fatigue. To truly understand it and for me to document how I am currently spending my days, no story about my life would be fully complete if I did not mention the overriding power of my day-to-day exhaustion.
Exhaustion, which is a daily occurrence. Exhaustion, which is both predictable and unpredictable in how it manages to drag me down to my sofa or my bed. Exhaustion, which on a good day, gives me approximately four hours of energy on a good day. Exhaustion, which if I happen to go over my daily allowance of energy, finds a way to quickly come and bite me on my wobbly bum.
I have said it before, but it is worth reiterating it, fatigue is not the same as requiring sleep. When it comes to this fatigue, I will take exhaustion without sleep, over decreased brain function any day. I’d rather not experience either, but I am trying desperately hard not to feel sorry for myself, and thus acceptance of these facts as I describe them to you, is crucial.
My current treatment consists of Revlimid tablets everyday for three weeks with one week off, accompanied by weekly doses of Dexamethasone and Velcade. To save you reaching for the Google, Dex equals steroids and Velcade equals bleach. It was the reintroduction of Velcade to my body in December, that sent my brain into it’s current downward spiral.
I cannot dress it up and I cannot lie. I am constantly tired. Is this enough clarity for you or do I need to go on for another 11 paragraphs describing what fatigue is like to hammer my point home? I think we know the answer to that one.
I’m really into examples at the moment and last weekend, I can provide you with a rather mundane one. I fell asleep at Mamma Jones’ dining table after I had conducted the most exciting of activities, which included a shower, decanting two tins of baked beans into a saucepan and eating my lunch. I had been out of my bed for a total of three hours. Three whole hours.
Spectators of my life, may believe that giving in to my fatigue on almost a daily basis may exasperate said fatigue. I have heard it many a time. Somebody will kindly advise me to go out, believing that it will make me feel less tired. It is a tactic that I have tried and tested, time and time again, each time willing for a different result. I can conclude, by shouting it from the rooftops, that my fatigue does not work that way. If I am tired, I am tired and nothing is going to change the feeling of complete and utter lethargy.
I am fortunate that there continues to be somebody in my life to tell me that it is okay for me to be tired. I especially need this provision in London. On occasion, he still needs to tell me that I cannot go out when my will is in deep battle over my body. A few weeks ago, I had planned a lovely Saturday of brunch and the cinema followed by an evening out. Having completed the first two activities, totalling five hours of activity, I knew the minute I walked through my front door that I would not be leaving my flat again that day. In fact, I did not leave my flat until two days after that. Missing an opportunity to socialise never gets any easier, let me assure you, and my frustration in the days that followed that Sunday was palpable.
On a much smaller scale, there are moments in my day when I feel so exhausted that picking up a glass of water is a chore. On my bad days, I might not even pick up that glass of water. The are a whole host of other daily activities where my execution of them is hindered by the feeling of nothingness, that I rarely seem to be able to escape from.
I know that this side effect makes me unpredictable and to many people, it makes me unreliable. Most of all, just with my decreasing brain function, it makes me boring. Many a night I wake up worrying that my flakiness, is perceived as just that, cancellation on a whim. Laziness. Selfishness. Indifference.
Haemo Dad was conservatively labelled a ‘fool’ last weekend because he told me that sometimes, I need to be seen to be making an effort with people. He is not the only person to say something like that to me, it is simply the most recent example. It’s a comment that makes me see red, and I’d probably still see red on this subject even if I were not on steroids.
My chemo brain does not stop me from fondly remembering the days when I could have multiple plans. It does not stop me from yearning for the days when I could socialise two days in a row. The thought that people in my Support Network think that they do not see me, or I do not attend events simply because I am not trying hard enough plagues me. Hence my red rage at the weekend. I think, and I know I am somewhat biased in my opinion, that I do try incredibly hard.
Given my current treatment schedule, I have not had That Friday Feeling for a long time. Thursdays through to Sundays tend to be my worst days, and they tend to roll into one big lump of time rather than four distinguishable days and nights. On the occasions when I make weekend plans, because, you know, I am 30 years old and need to live, it’s a military operation. I am going away this weekend, hopefully to enjoy myself and in order to facilitate this, I have ensured that I have no plans on Monday and Tuesday. I also forced myself to sleep for 24 hours since Wednesday morning. I have no idea if my planning will actually be of any benefit. Worrying about it, is also tiring. Can you see a theme here?
A friend of mine said to me that I always seemed to be busy and this makes it very difficult to plan anything with me. It was a conversation that made me cry like a baby when I was alone and had the time to think about it…. I suppose, to some extent, I am busy. My fatigue makes it very difficult for me to be flexible. In order to go out a few days a week, and by out I mean a meal, a trip to the cinema or my hospital treatment, I am forced to rest on all the other days of the week. Few will see and understand how difficult this can be.
It’s difficult on so many counts. It is difficult for me to go out and it is difficult for me to stay in. I strongly suspect it is a balance I will never get right. I pull myself in so many directions on the subject, but so too do the people in my life. I hasten to add that they do it for the best of intentions. On Wednesday for example, a Senior Medically Trained Person gave me a slight telling off for doing too much, and by doing too much, I am apparently making my fatigue worse. It is not my interpretation of my life but what do I know? I studied modern history, not medicine.
I could go on and on about this until the end of time, but that’d just be a waste of my energy. And so, I will end this. I need to rest my head.
P.S. I promise that Part III will be like a double expresso with a pound of sugar, as opposed to this, which I would compare to a two day hangover. Everyday.