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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2 thoughts on “Broken Record

  1. Emily Walsh says:

    Hi Emma! I was just checking a few of your posts and had a quick question about your blog. I was hoping you could email me back when you get the chance -emilywalsh688 (at) gmail.com- Thanks : )

    Emmy

  2. Terri J says:

    After being off meds for awhile after transplant our daughter is now back on Revilmid for maintenance therapy. They say this prolong the progression of the Myeloma. She was feeling so good & still feels well except for the fatigue. For older people the fatigue they suffer doesn’t effect their lives like it does for young people. Young people like yourself & Sara have busy social lives & have to work to support themselves & keep medical insurance. My daughter is feeling the abscence of the busy, fun social life she use to have.

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