I have not enjoyed this last week. In fact on the scale of all things enjoyable, the majority of my week has been in the minus. If I had any doubt that my fatigue was going to get worse, there is no doubt now. Fatigue has become my ruler, and it has led to me not doing what I wish, instead, I have had to cancel my plans and thus waste time, imitating a lazy fat slob, who does nothing with her day but lie on her bum getting value for money from her monthly Netflix fee. To say that this makes me sad, would be an understatement. Today, for example, when I realised that I would not be able to go out for lunch, I produced a big wet patch on the lefthand side of my bed with my tears. My week has been full of similar disappointments. I have been cancelling plans left, right and centre, because I know that my body is just not going to get me to where I want to go.
Contrary to population opinion, I do not put on a brave face for every minute of every day. People may think that, for that is what I allow them to see, but all of the things that made My Myeloma shit ten months ago, still exist and occasionally I give in to them. Occasionally, I become a victim of self pity. I allow myself to wallow in my situation and that is what has happened to me this week. All my rational thought has been buried deep under my bed, so the only thing I have been left with is dirty, rotten, stinking thoughts, which turn me, Miss Sunshine-And-Flowers into what is commonly known as a Moody Cow. For the last five days, I believe it would be a fair assessment to say I have been the moodiest of Moody Cows. It is not pleasant.
I am frustrated. All so very frustrated.
I am no stranger to fatigue; it has been my friend this last 317 at least. What makes my current levels feel so different is time. Lack there of. There is a ticking clock constantly in my head, and my deadline is looming. If I stand back, and peer into my life with my friend Common Sense, I would realise that it does not matter what I do with the next three weeks, for there will be time to be the life and soul of my party post transplant. The trouble is, I cannot do that. I have always managed my fatigue by giving in to it one day, because I know I can make up for it the next, or in the following week. The problem I have now, is that for the foreseeable future, I do not have a next week. Not having a next week, makes the days I spend in/on bed, and I have spent much of my last week in a horizontal position, seem like an eternity. Not only is it an eternity, it feels like a wasted eternity. There are so many other things I would prefer to be doing and need to do, but alas, my body is saying ‘no’.
In planet eternity, by default, I fall into a form of isolation. Without energy, I tend to isolate myself because I do not have the energy for conversation nor, leave the compound that is my flat. In my irrational world, this breeds thoughts of loneliness. When I feel lonely, more breeding takes place and out pops anger, paranoia and jealously. I am lonely because my exhaustion dictates that I do not have the energy to see people. All the while though, I have a feeling in the pit of my stomach telling me that I should be seeing people, that I should be doing something productive and thus, all I feel is guilt. Guilty that I am not achieving what I can achieve and guilty because I feel like I am letting people down. It’s a vicious circle, because then, I get angry. I am angry because I cannot do what I had planned and I am jealous because others can do what they had planned. Furthermore, because people can do these things, my loneliness translates this as their apathy towards me.
It’s a difficult situation and there is no winning solution. On the one hand, I am too tired to speak and plan, but on the other hand, I want my phone to be constantly buzzing so I know that even if I am stuck in this prison, I continue to receive my correspondence. This week, I have let myself feel like I am in solitary. I am in a Segregation Unit of my own making. I let the thoughts creep in of people not understanding, not caring, not grasping my currently levels of anxiety and fatigue and I hit back with the full force of my passive aggression. I hate it, but whilst I feel like I am being held hostage by my medication in this three week egg timer, I am going to act out (or in).
I know I am being ridiculous. I do not need people to tell me that. Rarely, when I have these thoughts do they stick around long enough for me to have to vocalise them. I throw them away. The egg timer is filling up fast and because of that, the negativity is sticking around. Being mature and stuff, instead of handling my negatively in a constructive manner, I act like a child. This embarrasses me. A twin did not need to receive my stream of consciousness earlier in the week, however she did. It clearly demonstrates that I am currently a Moody Cow. It is not big and it is not clever, but it is the reality of My Myeloma. It shames me, but like I said, at times, these outbursts happen. So, without further ceremony, I give you exhibits a and b:
I know this will get better, it always does, but it is just tough. Tougher than over cooked beef. I cannot emphasise that enough. My paranoia tells me that people do not really understand it. A friend asked me this week if I used my tiredness as an excuse to not see people, not to answer my phone, and my response to that was simple. I wish it was an excuse. It is the reason why; an excuse implies that I have some control over it. I do not. My current level of fatigue is such that my bed is my default position and anything outside of it, exhausts me thinking about it, let alone doing it. I would not choose to sit on my bum for this level of time. I would not choose to have a day of activity bookended by a day and a half of rest.
This is my life, and the sooner I accept that willpower is not going to win out before my transplant, the better.
Just five more days of thalidomide. Five more days.
P.S. For those of you who get my blog emailed to you, I apologise for the earlier publication. If you have not guessed, that was an error, and I ask you kindly, to delete it.