In my journey thus far, my brain has always been more willing than my body is able. This usually means that I say ‘yes’ to a myriad of things and then panic, sweat and have a sleepless night when it becomes apparent that I am going to fail. That’s really how things have worked everyday for the last 19 months.
The key point here, I guess, that I would like to highlight with lines made by a ruler and a red pen, is that I am almost always willing and more often than not, I do try to do what has been asked of me. Occasionally, I even succeed. A lot of the time, I fail. That’s really how things have worked everyday for the last 19 months.
Fortunately, my days at the moment are met with more success than failure. Providing I am sensible, I can achieve what I set out to achieve on any given day. The success is dependent on a number of factors including me having had to learn the power and advantages of saying ‘no’. I find saying ‘no’ very hard indeed, but in doing so, I am able to achieve much more than I have achieved in a very long time and that is not how it has been everyday for the last 19 months.
Learning to say ‘no’, or allowing myself to, as bittersweet as it is, is allows me to improve. There have four occasions in this last week, where every part of me has wanted to either go out or stay out, but some being separate to me has appeared in my brain and forced me home. If I am perfectly honest, most of the time when I am
in this predicament, I imagine what Housemate would say to me in the particular scenario and then act accordingly. It’s a tremendous amount of power to have to be sure. On Tuesday, the pain of leaving my party at 22:00hrs in a public house, to go to bed, was great. Big Sister had to validate my decision on the return to my room, because I saw it as a symbol of my losses. On Thursday, my decision to be in by bed by 23:00hrs also had to be validated. In my pre-myeloma life, I would have been aware of my need to rest, but I never acted upon it. Now, if I face any chance of living a normal life, I have to act upon it, and act upon it I do, multiple times a day.
It saddens me. Restricting myself, censoring myself if you will, saddens me. My Myeloma did that. But, if I did not do these things, I would not be able to tell you the next part of my tale….
And now, I boast.
A fortnight ago, before I got angry at the Velcade fatigue, I worked a 31 hour week and had an almost full day at the hospital. That my friends is called progress. I barely noticed my working hours that week, but I suspect that is because I had said ‘no’ enough times that I spent my evenings on my bed with the dog. Last week was met with a similar output, minus the weekend of Velcade fatigue, which was greatly appreciated. I worked for 33 hours this week with a day of annual leave. Boom. On Tuesday, I was awake for 17 whole hours and outside of a bed for 15 of those hours. Sure, I slept for 11.5 hours the night after, but that is still progress. Progress that can be backed up with actual evidence. Evidence by the way, that we would not have, if I had not also rediscovered by memory.
I am slowly trying to celebrate these successes. The pride I have in being able to work 31 hours a week, has been evident all week long and that has surprised me, because I think I have told everybody I have come into contact with that this is the case. I might have even told people who do not know me that this is the case. To those people, I am probably just lazy. The people who know me and have listened, congratulate me. Rarely do I go into the details of what this achievement means I cannot do, but that, I hope by now, is evident. In three weeks time, I hope to be able to work a 37 hour week, whilst continuing with my current treatment.
The right balance of the yes and no, continues to evolve and I have no idea what the ‘right’ balance will actually look like. It doesn’t look like what I am doing now that’s for certain, despite my boastful successes above. It cannot look like what I have now, because I am yet to factor in my pain management as well as my fatigue management. No doubt, a few more no’s, a little less spontaneity, a bucket load of tears and a haemorrhoid cushion will have to surface before we reach that level of paradise.