Bed Bound

Today is Sunday. That means that I have spent the last six days feeling ill. When I say ‘feeling ill’, I do not mean I have been feeling slightly under the weather. I have been crashing and it has been far from pleasant.

I anticipated the crash, it is part of my treatment cycle and it is caused by the steroids I took last weekend. I would have mentioned it before. Although I anticipated the crash, and I opted to experience it in this way, it does not make the process any easier. Once upon a time, I used to look forward to a day or two where I could just lie in bed, watch movies and sleep, but as I realised this week, for all those times I had the ‘flu’, I was never really ill. Ill is being completely incapable of getting up and feeling so poorly that you just long to fall asleep to make the time go faster. I can say with all authority now, I do not enjoy lying in bed sleeping and watching films anymore. After nearly a week, I am bored of it and there is nothing I can do to break the cycle. I just have to ride it out. I like a theme, and on Thursday I thought it was appropriate to watch films about people escaping from prison, because that I was I want to do. I want to escape from my current prison. It turns out that there were only two on Netflix that matched this, so my plan was buggered.

I am ashamed of my steroid crash. I am ashamed of my inability to do anything when I crash. I feel like I let myself and others down when I lie in my bed for six days. I had so many things to do this week, but despite my will, I could not do anything. I say will, but if I am truly honest, I did not have the energy to have will either. My brain for the last six days has been categorised by blankness. Nothingness.

Around the middle of the crash, I thought that perhaps I was making it worse, that I was making myself feel worse by giving in to the weakness. Lying in bed and sleeping for hours is not a constructive use of my time. And I have absolutely no control over it, and I hate that. With a crash comes isolation, and with that isolation comes acute paranoia that people look at me, look at what I am doing and think that I can do more. The frustrating thing is, I look at myself like that. I think that I should be able to do more and have spent nearly every hour wishing for this crash to be over, so I can properly get out of bed. I realised on Wednesday that I had not looked in a mirror for over 48 hours. That is something and when I did look in the mirror, all I saw was a dead drag queen looking back at me; I think it was the beard. I woke up on Friday and thought it was over, I even vocalised it, however, this was not the case. It may have been better, but it was not over. I managed to get to the clinic and a train, but that was me done. I knew then, for sure, that this is not just laziness. It may appear like laziness to an outsider, but all the effort and longing on my behalf to get myself out of bed, simply resulted in me having to get straight back into bed again.

Inevitably, when one is imprisoned by their body for a prolonged period of time, there is a tendency to lean towards self pity. The drugs that got me in this position greatly aid this process. I am sure that in reality everybody who has ever met me, or passed me on the street, has spent the last six days in as much pain as I have. They have thought about me every second of everyday and empathise so fully with my predicament, that they cannot live their normal lives. That’s the reality, but my mind says everybody has forgotten that I am sick, and forgets how difficult some days are for me. My mind says that I am a nuisance and when I say that I am ‘ill’, people think I am just a broken record seeking attention. My mind says nobody understands how poorly I have felt. My mind says that everybody but me is living a hedonistic lifestyle and I am not even a consideration. If I didn’t have to live through a crash, I certainly wouldn’t consider it. Now, I can hear a voice in my heading telling me off for these thoughts and these thoughts are yet another reason why I take the steroids in one go… My mental state will thank me next week for three whole weeks and I have to hold on to that.

Outside of sleep, I have thought a lot this week about my crash and why I am finding it so difficult. I experienced illness like this on PADIMAC, so I should be an old pro by now. The main reason I find it so difficult is because I manage to live with My Myeloma now. Before Christmas, my life was My Myeloma. Outside of this week, I live as active a life as I can and that is just marvellous, unfortunately for now, it means that I feel the hiatus so much more. I can feel everything stop, because I have more things to stop now. Admitting on Monday that I was incapable of being ‘normal’ took an enormous amount of courage on my part. I manage to live in spite of My Myeloma and for this one week, I have to let it become the boss of me again. I hate that.

The crash is the pits.

So that’s that then. The reason I have been quiet and the reason I have been a bit testy. Fingers crossed it will end soon. I have to get back to normal. I have a week planned.

EJB x

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3 thoughts on “Bed Bound

  1. Deborah says:

    I do love the way you write Emma and wish I could be as good as you at articulating just how I feel. This blog post sums up so well just how it feels to be taken over by complete fatigue and illness and how once having a day in bed would have been so enjoyable but now holds me down like a prisoner as you suggest. I feel I have aged and wonder if I will ever recover enough to be able to push myself out of the bath because of this blasted Neuropathy. Towards the end of this week I have my harvesting and firstly the next big dose of chemo that I just have to hope doesn’t come along with its own set of side effects to pull me further down the road of destruction.
    I am sure you have already written about your experiences with that so with my next period of energy I must look back and find that post.
    Thank you for your writing
    Deborah x

    • ejbones says:

      Hi Deborah, I definitely blogged about all of that, right up until the Bad Day. I had never had anything like the cyclophosphamide. Within a few hours, I was a nauseous zombie, and I actually did look like a zombie because I lost all my colour. It was one of those rate times when a taxi was warranted from the clinic. I just saw it as a training session before the high dose. I did get an infection after, which meant going to another hospital, but that cleared up quickly once they knew what it was. I managed to get to a week after my harvest before they told me I wasn’t have my transplant.

  2. “I manage to live with My Myeloma now. Before Christmas, my life was My Myeloma. Outside of this week, I live as active a life as I can and that is just marvellous”

    Good for you Emma. It’s all any of us can do – live as actively as we can. I hope you are soon able to escape treatment for longer periods, and so live even more actively

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