Tag Archives: slow

The Red Herring

What does feeling better feel like? Are we there yet? How much of the biscuit have we had? Half? Three quarters?

Yesterday afternoon, I told somebody I could see it. That I could feel it. feeling better. In my sleep on Thursday, I finished a bottle of water and when I woke, I requested another bottle. I was drinking. I wanted to put a bra on. I also had an improved attention span, accompanied by a reduced desire to sleep. I did two jigsaw puzzles. Such was my improvement, that I took myself out of my bed and onto the sofa. I moved rooms. I also cooked something in the oven. I had faith that I would not fall asleep in the 20 minutes it took for me to heat some chips.

I was not capable of standing for a long period of time nor was I able to explain the principles of utilitarianism, hell, I still cannot of getting dressed, but I felt better. To me, yesterday’s improvement did not feel subtle; it felt magical. To anybody else looking in, I am sure I still looked like a weak person, with cancer, in need of assistance. The changes I experienced, to them, would have been subtle.

My physiotherapist recommended that I keep a diary of this period, noting what I could not do, by day, so I could look back a few weeks later, and realise the improvement. Up lifting, page turner. I should have known then, that this was going to be slow. And the improvements were going to be subtle. I am not keeping a diary by the way. I do not need further evidence of my regression to childhood.

I hate the subtlety of this. I hate giving my body time. Hatred and frustration defines me at the moment. I want improvement to move at the speed of light. Failing that, I would take improvement at the speed of sleep. I want to fall asleep feeling like I currently feel, to wake up and find that I can get dressed, stand up for longer than five minutes and leave my house for six hours. I am not unrealistic. After those six hours, I would expect to be tired and I would go back to bed. I just want those six hours. In that six hours, if I could not leave my house, I could bake or hone my arts and crafts skills. I could do something that is not lying.

The mental anguish this subtlety puts me under is worse than the physical pain I have to endure. My physical worries are not great enough to make me not notice my incapacitation, but they have not improved enough for me to be where I want to be. All this does is give me time to think, time to dwell and time to get mad.

It is a wonder that I am able to speak to people without shouting or crying the minute I open my mouth. I feel like doing both, but the latter for sure, would be a real waste of the water i do drink. I presume that the opportunities for me to converse are currently so few, that my survival mentality kicks in, and I have to be nice and calm, to ensure that they come back. I have to not show I am upset. I become grateful.

I am constantly being asked whether I am feeling better, and I appreciate that of course, but my improvement is too slow to provide am answer. If I answer with a negative, is that just me, being negative? If I answer positively, people misconstrue the significance of the improvement. Better is not better.

Yesterday morning I did feel better. My ability to drink more than a sip, was the key indicator. For a period, I was also able to converse. I was walking around. I did a fruitless search for dead rodents in the garden. For an hour, it felt like a school holiday. And then, it did not. I couldn’t do those things. Better is not better. My deterioration was not subtle. Every gulp of water I had had, every morsel I had eaten, during my period of good health, rudely and uncomfortable made a reappearance. Once my stomach had emptied itself, without the need for digestion, I became a weak little thing who needed her mummy. Vomiting is never fun.

And that brings you up to the present. I am in bed. I am weak. I am not wearing a bra. I am frustrated. I also keep forgetting that I cannot lean or roll to my left, without causing a lesion headache.

All of it, really is very annoying.

EJB x

P.S. Thursday’s Full Blood Count did not contain any shockers by the way. My boaster from the previous Thursday had worn off, but everything seems to be ticking along.

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Waking Up

I have never been a morning person. I have always enjoyed a lie in and I have always loathed an early start. I did the latter because I had to, I’m an adult after all, but rarely did I take pleasure in it.

Since my diagnosis, I have continued to set my alarm clock every week day; whether I get up when it goes off is another matter entirely. Keeping that normality however, pressing the snooze button multiple times, is important to me and I have no intention of turning it off. My drugs and My Myeloma in general make me tired, so that snooze button gets used a lot now. Six times this morning. Fortunately for me, I also have a human, who acts as an alarm clock before he goes to work, and that usually gets me moving. If not moving and dressed, at least temporarily out of bed for a pee and a cup of tea.

The struggle to wake up these days, under the influence of thalidomide is proving to be much more difficult. As I have always been something of a sloth, it means that I am now late for every day time activity, including my treatment every Friday at 11. The excuses I give for this varies, but I am yet to use, ‘I just couldn’t get up’. I suppose I could change the time of my appointment, but if it was later, I know that I would be in exactly the same position as when it is at 11. At least it forces me to get up. I always have grand plans about the time I am going to get up and become a human, but at 07:30hrs, that usually goes out the window. By 09:00hrs, I just hope that the next day will be better.

I am a zombie in the morning, correction, every morning. I usually feel like I have downed a good few pints of Kronenberg the previous night and that sensation will stay with me until at least midday when I will eventually be able to converse without going cross eyed. Even on the days and nights when insomnia is visiting, I am awake, but my body is incapable of getting up. I get through the mornings at a snails pace and it is frustrating. If I do happen to have plans before 14:00hrs on a day, I try to take my drugs before 22:00hrs the night before, because this will make a difference on my performance when I wake. It doesn’t however completely remove the hangover. If only it did. Fortunately, I have dealt with many a hangover in my time.

Gone are the days where I can skip breakfast. Added to my current levels of tardiness, is the fact that I have to take drugs and eat before I do anything. There is a timetable within that however, so I am not talking about a five minute slot every morning where I shove things down my gob. It is slow, leisurely affair. My bowel issues will almost always delay me in the morning. I imagine not many people have to schedule in poo time. The sad thing is, one cannot predict how long this activity will actually take.

I really do hate being late for everything. I have felt it more over the last few days, but I think that is because my alarm clock has taken himself on a holiday, so I have to take on a little bit more responsibility for my actions. Or lack there of.

One day I’ll be able to wake up at 06:30hrs again and then be ready in 45 minutes, but unfortunately, I suspect that for this chapter of my life, I cannot exist before 11:00hrs.

To be clear, all of this is not because I am lazy, it’s because I have cancer. Nobody can argue with that.

EJB x

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