Tag Archives: lytic lesions

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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Reliance

I have spent a good five months telling myself and anybody else who would listen, that I could walk without my beloved walking stick and that He was only needed in my palm to tell the general public that I had issues, so I did not have to. I am a strong, independent woman, who absolutely positively can walk substantial distances without a walking stick.

Sadly, this is not the case. It surprised me. I might be able to walk unaided, and frequently walk short distances without it, but as I discovered on Tuesday, there is a price I pay for doing so. I rarely go anywhere without my walking stick. It is true. I may walk around my flat without Him, but if I am leaving my front door, he is in my palm, and we are together. On Tuesday, I did leave my flat without my walking stick, I did so because I could not take Him and my luggage and I calculated, that as I had no intention of going on public transport during my holiday, I would not need Him. On Tuesday, as well as leaving my life to have a stem cell transplant, I also walked a great deal, around the hospital’s unofficial campus, unaided. Until approximately 18:45hrs, I thought absolutely nothing of it. Why would I? I never normally think about it, and on Tuesday, my brain was preoccupied with my transplant, to spend time thinking about my back pain.

That is the problem with my disease, my focus this week should have been solely on fighting this wretched thing, and not having to worry and let’s face it, experience severe pain, from my lower back. Pain is a byproduct; it is not the cancer. Even this week, I have to balance the two and remain cautious of the pain. When the illness sets in, everybody will be looking at the side effects, but I know what my neck and back will feel like after days of lying in bed. It will not be pleasant.

Anyway, by the time I realised why I had spent Tuesday night feeling like a horse had kicked me in my lower back, it was Wednesday… Not knowing how long I will be expected to walk around before I am sentenced to solitary, meant I had to get a replacement, which was much easier than anticipated thanks to my favourite receptionist. It is a ‘temporary’ replacement. I do feel like I am cheating. I am cheating on my beloved walking stick, with a younger, cleaner model. The new one still has his stickers in place and there is more of a spring in his step. And yet, I am yearning for my love.

Now then, if this wasn’t enough evidence for me to get a Freedom Pass, then I do not know what is.

My name is Emma Janes Jones and in addition to having myeloma, I, unfortunately, am disabled.

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The Reminder

Until last week, the last time I spent four days in bed was the epic Christmas of 2012, after my last dose of dexamethasone. Then there was last week.

The thing about spending a long period of time in bed, is that it gives one time to notice things that when they are busy or active, they probably miss. I say one, I mean me, because I would not presume to speak for others. Otherwise I might open up a can of ‘roid rage on myself. There you go, that’s this week’s fixation/target of irrational anger… Back to my bed, so yes, I spent a few days noticing things about my body that I had missed when I was feeling better. I didn’t actually miss them if truth be told.

My current ailments, because that is what I am talking about, look something like this:

• Neuropathy – I told you about this the other day.
• Pain – My back is playing silly buggers. I’m regressing. Sure, I actually blame this increased pain on the fact I had been lying down for so long, but I have gone back to the point where bending over is a difficulty. That is why this weekend, I decided to pick up and spin my 20 month old niece around a bit. In your face lesions. I am paying for that today. I am also paying for playing crazy golf on Sunday. That is probably a better indicator on the state of my back.
• Pain – The pain is not just limited to my back. Oh no, that would be unfair to the rest of my body. I also have a sensation of having a chest infection. It’s not a chest infection. I may not be medically trained, but the sensation is familiar to me. It’s my body’s way of telling me that there are lesions at the front as well as the back. I recall me telling Middlesborough last July that I could not go to Zumba, because I had a chest infection. It wasn’t a chest infection.
• Fatigue – I also told you about this the other day.
• Bowel – nobody knows what it going on here. One minute it is shy and the next minute it is in my face. In short, it is not right and it is taking up a considerable amount of my time dealing with the ‘issues’. My current favourite friend, is called Suppository. Let’s hope my back does not get any worse, because that may make our relationship problematic.

To top things off, I am still getting the hot flushes, which was delightful last night at dinner.

There you go, that’s a list. That’s how my body is rolling. These little illnesses like to compete with each other for my attention. They have it. The good news is, is somehow still manage to go about my business.

EJB x

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