Tag Archives: bored

Crashed

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.

EJB x

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.

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Broken Record

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

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Four Weeks

I have four weeks of freedom before I go into UCLH for my stem cell transplant. The provisional date is 27 March. I finally have a date. One day I may have a date with a man too. We can hold hands and ‘stuff’, but for now, the 27 March 2013 is the only date I am worried about.

I will make myself enjoy the next 23 days, but I don’t want to. I don’t want to have to wait.

Way back in December, I was told that this current waiting period between the harvest and transplant was 1-2 weeks, then, I was told it was going to be 2-3 weeks and now it is four. Well, 27 days from my harvest. I know that in the grand scheme of things, an extra week is not a long time, but it is a long time to me. Getting to this point has been one hard slog full of set backs. I want it to move forward faster than the timetable is allowing it to.

There was a point when I looked forward to some time off treatment, but not anymore. I have already had six weeks off. Six whole weeks of waiting for something to happen and I do not want another four. I do not see this time as a time for me to enjoy being ‘normal’. All the time off gives me is extra anticipation and longing for the time when I get a period of recovery, when nobody knows when My Myeloma is going to come back (the stats say two years tops). Not a four week break that I know is only four weeks. Four weeks of waiting is not freedom. It is not living. After the transplant, I can, or at least I hope to, live for the moment. I am not living for the moment now, I am waiting for a course of treatment that I am assured, is far from pleasant and that is always in the back of my mind. Every added week to this process, that goes against my initial expectations, are days added to my sentence and I didn’t do anything wrong in the first place.

Four weeks. I am not entirely sure what can happen in four weeks. I’ll give it a whirl mind.

EJB x

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