Take one hefty dose of fatigue, mixed that with an equal measure of impatience and what you end up with is a toxic amount of frustration.
I am very frustrated. I am the picture of horizontal frustration.
As with everything related to this procedure, the frustration grows from me not knowing how long this fatigue will take to get lost. I have not lowered my standards enough to say ‘do one’. I still have some brain cells working. At least I think I do. I know that the fatigue can last a long time. I also know that it might only last a few weeks. I know, that it is slightly different for everybody. What I do not know, and what nobody else knows either, is how long I am going to be bed bound for? How many more times am I going to wake up hungry, and then have to wait for three hours to build up the energy to serve myself a bowl of cereal? How many James Bond films am I going to start, but not finish? I am currently on five, by the way. One would say it is a blessing I have seen them all before. (Sean Connery in short shorts). When am I going to experience thirst again? More crucially, when am I going to find the energy to wash myself. It’s been four days now and my right armpit is pungent.* Seriously.
Home is much better than the hospital. I should get that point out there right now, in case anybody was mistaken and thought I wished to return to that sterile environment. I don’t. I think that when I returned home on Friday, I imagined, actually, hoped, would be more appropriate, that the fatigue, would mean me, being a little sleepy as I made my way between the rooms on the ground floor of the house, enjoying my various box sets, whilst people did things for me. Essentially, I fancied a summer holiday, of the type where I got to watch Independence Day on repeat and get obese. The reality, is far less exciting. The reality is that I cannot look after myself. Not only that, but the reality means that I cannot really focus on anything long enough to kill some time, and I am confined, predominantly, to my bed. The family do their best to get me up and about; on Saturday this led to me having a power nap in the back garden, on Sunday, I was forced to paint a boat. On Thursday, I am forcing myself to get dressed. I was going to do this before I found out I had to go and have a blood test.
Patience would go a long way right now. I have never had any. The nice ladies with the soothing voices in Macmillan say that I lack patience because I do not like losing control. I think they are correct.
If I was not me lying in this bed with the bedsheets I do not like, I would probably offer the pathetic, bald figure who looked something like me, some advice. I would say that I only had the Melphalan three weeks ago, and the transplant was 20 days ago, the Medically Trained People say this feeling is perfectly normal and let us not forget, I did get out of hospital earlier than expected. Everything is as it is expected to be and it’ll work itself out to a point where I can bake a cake. I would also add, because this part is important, to keep my head up; medicine may advance… I am wise of course, but logic isn’t really a friend of mine right now. Logic is not going to make me better nor is it going to make me feel better. Logic is not going to change the fact that My Myeloma means that I will inevitably feel this way again at some point in my future. Put that into your smiles and mindless banter and smoke it.
The good thing about my current situation is that, in spite of my impatience led frustration, I am actually doing what I have been told to do. I have let the fatigue in. It’s in my bed with me and that is where we live. I am allowing people to look after to me and I am not getting annoyed about it. I sleep when I need to sleep, which in the words of Vivian Ward, is pretty often. That doesn’t really work because she was talking about being trapped in a tower by a wicked queen. Mamma Jones is not wicked. Myeloma is.
I believe time will heal this current wound. I just wish I knew whether it was all going to be worth it. I think I know what the answer will be, but I have to be moving around again to feel it.
EJB x
* The shower comes this evening, thank goodness. Fortunately, I have lost a lot of body hair. I have to wait for there to be other bodies in the house and I do not think the dogs count.
