Tag Archives: walking

Operation Build Up

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.

EJB x

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.

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The Outside

I have always been one for enjoying the world outside my home. Flip the coin and I have also been one who has enjoyed wasting a day in my home. I think of all the times I indulged in the latter now, and I never imagined that it would become my existence. When I am at home now, if I am not in an uncontrollable sleep, I think about being somewhere, anywhere else. Part of me longs for it. I long for my old body and my old life, outside of N1 or Deeping. The reality is quite different. With my new body and my new life, I can find the outside world terrifying.

The flat is safe. I know how many footsteps there are from my bedroom to the toilet and back again. I can navigate most the hurdles that could possibly come my way in the dark, without a walking stick and more often than not, I can control who comes through the front door. The outside world on the other hand is a vast pit of unpredictability and danger. The general public equals danger.

I can count on one hand the amount of times I have left my flat for something that is not a pint of milk, by myself, since I was diagnosed nearly three months ago. I do not include hospital visits in this, because those sort of trips are controlled, basically escorted and all so very predictable.

Leaving the flat by myself feels naughty, almost forbidden and I am not sure if I like it. I want my independence, but I want that to come without the anxiety of falling over or being pushed in a crowd. People frighten me. They live in their own worlds and their worlds do not include My Myeloma. I do not want to walk around with a big sign around my neck that says “with cancer and brittle bones”, but sometimes I think it would be a good risk management tool. Just in case.

There are a lot of days now, when I do not need my walking stick. Hooray for pain control. That said, I would not dream of leaving the flat without it; it acts as my protector when there is nobody around to be my protector and even then, it doesn’t always work. People push, barge and shove. People do not consider what the stick is for and thus they are a threat. A threat to my bones and a threat to my long term mobility. Today, I caught two buses and on the return journey there were no priority seats available and nobody made one available. I am not sure if I would have done this in my former incarnation either. At the weekend, I ventured into a shop without my stick but accompanied by a five year old and a lady rather politely asked me to move or she would hit me with her buggy because I was blocking the aisle. I would not have said this in my former incarnation, but I may have judged the large woman standing in my way struggling to stand. Maybe this is karma.

I want to be outside. I want to do normal activities and not feel My Myeloma. Physically, this is impossible and until I address my current fear, psychologically, it is, erm… tricky.

My name is Emma Jane Jones and I have become a scaredy cat.

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