Building up my strength is no walk in the park, for I would not be able to go for a reasonable walk in a park. Clearly, it is comforting to know that I am now in a position where I feel like I am ‘building myself up’, but it is more difficult than I anticipated, in the various scenarios I had in my head prior to my transplant. For example, I did not envisage that I would find it just so difficult to motivate myself to wash, and think about it, I don’t even have hair to wash.
Last week, I left the house three whole times. That’s right, in seven days, I left three times. Thankfully, there is a bit more space here in Mamma Jones’ house for me to wander, than there is in my flat. That benefit is balanced by the fact that in the working week, I am alone between 08:00hrs-18:00hrs, bar two pedigrees including one who actually likes me. When I am tired, this does not matter, if I get a window of energy, it does for I am trapped. The beauty of ‘building myself up’ is that I cannot predict when I will have a window of energy. There is no rhyme nor reason to it, and for that reason, I am reluctant to make plans (disappointing others hurts my forehead). One minute I could be lying in my own filth and the next, I am able to the my times table once more whilst simultaneously leaving my bed. The windows do not include cartwheels just yet.
As part of my recuperation, I did consider that I would have lone windows and I have activities for these. These activities are productive, but whilst they are productive, they are nothing like me crossing the threshold and entering the big wide world, which I cannot do alone. Getting dizzy next to the River Welland just would not do. Doing things in the outside world, has a different response to my body. I described the sensation to a friend at the weekend; for every two hours of activity in the real world, I can guarantee needing to spend an exhausted eight hours brain dead and horizontal as payback. My experience, thus far, is that I can feel fine and dandy one minute, and the next, well, I just don’t. Inconsiderately, the fatigue does not appear when I return to the house, it can actually happen anywhere. The colour can drain anywhere.
Yesterday, as part of Operation Build Up, I used my National Trust membership and went on a 20 mile trip to Isaac Newton’s family home, I even saw the genuine apple tree. It all looked very pretty. I say it looked very pretty, for I was completely incapable of taking anything else in. I blame my activities the previous day. The science museum there, full of all these fun little experiments, was lost on me. I just like the sound of the pool ball hitting some bells. Ding, ding, ding. It was good. The day before, I spent a good five hours, two and a half of those were outside, with Big Sister and her offspring. The offspring can be pretty tiring when you do not have cancer and are on day + 31 of a stem cell transplant. I was wide awake with them, until I wasn’t, sleeping on the sofa incapable of moving, but able to complain.
The post outing fatigue really is frustrating. It is more frustrating than the insomnia that comes if I have not done enough in the day. The first night I had insomnia, was the first night I knew I was improving. The improvement is just so slow. I had hoped that by now, I would be gearing up for a return to my nation’s capital, but I am not capable of looking after myself yet. I am 29 and I cannot look after myself. Catch.
Operation Build Up, has two distinct parts. I have mentioned before that one of the many benefits if myeloma is that one does not just have a deadly disease, they also have varying degrees of weak bones and pain to contend with. In case you did not get it, I do not think that this is actually a benefit of myeloma. Anybody who has spent a significant amount of time in a horizontal position, would, I imagine, experience some difficultly when trying to resume their normal duties. Stiff knees and jelly legs. I had/have that too. For me, my return to vertical living, adds a whole new challenge, separate to my fatigue and much, much much more painful. I have a back. I am telling you I have one, because apparently, it is a little attention seeker at the moment, and it wants everybody to know it is there. I can walk for less than five minutes before I feel it. I am attempting to carry on in spite of the pain, this is Operation Build Up after all, but it gets to the point where I cannot and I am forced to lie down, even if I do not want to.
I would say that the pain I am experiencing, is reminiscent of the pain of September 2012. I struggle to stand, getting out of a car is a treat, I need that stick more than I would like, and when it is really bad, I waddle. Last time, it took me two-three months to walk far distances without experiencing the pain and three times as long before I could carry more than one bag of shopping (I am not sure if I should be doing this anyway). I do not want to have to wait for two months. I do not want to have to sit down or lean every five minutes. How am I expected to cook? Hang on, I can’t do that anyway, for I do not have the energy. In some ways, the pain is more frustrating than the lack of energy, because I have already overcome it once. It feels like regression, and I do not like that. Combine the aches, with shortness of breath caused by the fatigue and I look like I am from Boston, Lincolnshire if I were to take the Daily Mail as gospel. At times like this, I start to get angry with the lovely locum GP again and the delay she caused to my diagnosis. Without the delay, maybe it would not be as bad and I could recover with more spend and agility. Maybe.
It is what it is though, and getting angry and overly upset is not going to improve it. It is a matter of practice, exercise, patience and pain. I have to let the pain in, in order to improve. I am going to have to be a bad ass. It’s doable. Plus, I can sit smugly in my bed, pleased that I requested an appointment with a physiotherapist having anticipated some difficulty in this area, and have the exercise technics on a piece of A4 paper. Listen up boys, I will be strengthening my pelvic floor. Woo. They key to this though, is doing them.
With that then, I am going to get out of bed, and do something for as long as I can, before I can’t.
Get to it.
P.S. Just to give the full spectrum of my world, I am still suffering from nausea. It’s morning sickness really, for I predominantly get it as soon as I wake up and that generally causes a delay in me getting up. I attempted to stop taking the pill that prevents this, for that causes something to get worse in my bowel, but for the time being, I cannot. I need to pop that medium strength pill at least once a day. It’s okay though. I am not up the duff.