Crashed

Last Thursday morning, I woke up and asked myself how it could possibly be Thursday morning and I promised that I would write about how I had spent three days in bed with time on fast forward, later that day. The only issue was that on Thursday, I was still in bed and my time was still on fast forward. It was a feeling that lasted for a further two days. It is Monday morning now and I no longer feel like my time is just passing me by, nor do I feel like I need to stay in bed all day. It is a feeling that I can only describe as an achievement. An achievement that needs to be embraced in moderation, obviously.

The fault lies with the steroids. The beastly steroids, steal my time and effect my mood, and try as I might, when it happens there is not a damn thing I can do about it. Last week, I was crashing. I want to give what happens to me a new name, as I doubt the word ‘crash’ is medically accurate. Though a ‘crash’ is exactly what it feels like to me. My body stops, so too does a lot of my cognitive function and I temporarily do not feel like myself. The time goes by so quickly; the lack of achievement feels like a complete waste of my 30s.

Here’s a little secret; cancer is not glamorous. Sometimes, you really do have to lie in bed, sweating, whilst flashing your knickers, shoving ice lollies down your gob to enhance the taste buds, for five whole days. Knowing that whilst you, or in this case I do this, everybody’s life around me just goes on like normal. I am one to blow my own trumpet and as I told myself last week, it takes a certain amount of bravery to do absolutely nothing and not cry hysterically about it, feeling insanely sorry for oneself.

My week, my friends, went a little monotony like this…

On Monday, my mouth tasted like I had had an every lasting metal flavoured gobstopper and I was tired. I was not tired because of my steroids, I was tired because I had spent too much energy on the Saturday before the Monday. I therefore decided that my flat was where I needed to be. I also completed the last parts of my crash preparation, which pretty much involved making sure that the fridge and freezer contained food that could be cooked by a brain dead zombie experiencing dizzy spells, who struggles to bend down and calculate timings. The preparation was important, I had decided in the week leading up to it that I needed to see whether I could look after myself during a crash. I also decided that it was essential for me to succeed in this challenge.

I cannot remember anything else about Monday apart from the fact that I watched a film with Housemate on and I told him just before I went to sleep that my crash had started. It’s a subtle change, but last week the first thing I noticed, apart from the horrific taste in my mouth, was not the fatigue but the fact that the skin on my neck and shoulders felt bruised. This is what steroids do to me. Well, it is one thing steroids do to me.

Tuesday and Wednesday are a blur. Tuesday and Wednesday were the worst days. I know I showered and got dressed, but neither activities occurred before midday and neither activity was what I would describe as easy. I started several films, but I do not think I actually finished any in one sitting. I wanted to sleep and when I was not sleeping, I was really just staring at the tea stain on my bedroom wall unable to collect my thoughts. I may have spent a lot of time looking at my phone, hoping for and getting news from the outside.

I did not leave the flat during this time. Not because I did not want to, but because I knew that I probably would not have been able to get anywhere. Housemate cooked me dinner and encouraged me to leave my bedroom, which was a good thing. Moving the 16 steps from bed to sofa, gave me a nice change in scenery and online demand television service.

I was not maintaining a spreadsheet of my activity, but it would be remiss of me not to mention that during these two days, at least two hours of my time was spent attempting to toilet. On Wednesday, after 45 minutes I had to give up because I had a dead leg. If you want me to be graphic, it was my right leg.

By Thursday, when I felt it should only be Tuesday, I needed to escape the flat. Escape I did, 10 minutes in a taxi to a matinee screening at my local cinema. It was progress. I also made a little trip to Sainsbury’s on my return to stock up on ice lollies. I was out of the flat for three hours and that was enough for me. It was too much for me. By late afternoon, I was back in bed, feeling once more like a zombie. If zombies also experience inexplicable rage, which after I few hours, I deduced was due to the fact that from Friday-Monday, I had taken a rather hefty dose of mood altering Dexamethasone and not because Housemate made me wait less 30 seconds to reach my ice lollies.

Friday was much the same as the three days that proceeded it. I was improving, I know this because I actually cooked something rather than reheat something to eat. I also cared about what I ate and it was not something I had to do for energy. Okay, I also went out for lunch with my cousin. That trip, was a whole hour out of my flat.

All in, last week was a frustration. It was not helped by the current humidity in London. Heat and steroids are not a happy cocktail. That said, it was not as frustrating as I thought it would be. Unlike a fortnight ago when I thought there was not a chance of me getting through my treatment, I realised as I was lying in my pit, that I would get through it. I cannot sugarcoat it, the crash is awful, and I hate that because of the extra dose in my first cycle, I will be crashing again next Monday. Next Monday for goodness sake.That said, this is temporarily my job. Taking my medicine, doing what I am told and spending a week in bed, is my new job. If I think about it this way, I know that I can banish some of the frustration away. It is not laziness. It is just the way things are for me.

I do not want to embarrass anybody, but I know now that whether I crash in Deeping or London, there are people around who have my back and are on hand to assist me, should I need it or request it. The need and the request, do not often go hand in hand. I felt thoroughly supported last week, and although it was me feeling and looking a mess, it felt almost like a team effort with Bruce as the mascot.

I friend told me that on Thursday of last week she went to an exhibition, to a lunch, to the cinema and then went out in the evening. Her day had more activity than my five days in bed. It had more activity than my entire week. I will learn in time to not get jealous about such displays of energy. Like I said, in a week’s time will be a good place to start.

As for my weekend, well, I ended the crash with a casual trip to Buckingham Palace. That in itself and the two shandies I had in the evening, meant yesterday was a day of rest. Now let me tell you something for nothing, after a week of not being able to leave my flat, a day choosing to stay in my flat watching a sitcom aimed at females, may be one of the finest feelings known to myeloma-kind.

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Buckingham Palace

And now, I shall attempt to have a fulfilling week. I need to refill my cupboards. Stat.

EJB x

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2 thoughts on “Crashed

  1. Terri J says:

    Dex is the worst. Right now my daughter is not taking Dex but I am afraid she may be soon back on it. It is 2 years from transplant in August & she is slipping out of remission. The numbers are slowly creeping up . So the Revilmid maintenance is no longer working. A plan is being formed by the docs but first she has to get better from the current issue of dehydration & not eating. for 3 days last week she went to get IV fluids & electrolytes. Drinking on her own now but not eating. Afraid of getting sick from both ends. So weak & fatigued. The ups & downs of this disease are frustrating. No matter how hard you try to do everything they tell you to do (which she is very compliant with their course of action) there never seems to be a time when there is nothing to deal with.
    Jealousy is a big issue for me when I see & hear of her friends, cousins, young people her age doing so many fun things. I just pull myself back & ask the powers that be to let her experience just 1 or 2 fun things this week. The last 2 weeks fun hasn’t happened.

  2. It is monumentally difficult to be a standing-by parent with this disease. When kids are smaller, you feel more potentially powerful, creator and God to that child… look, I can manifest a PB and J! Wow, here’s a new toy to distract you from that boo-boo on your knee… But MM seems to have its own power to defuse and deflate, so as a parent that is what we need to resist. And praying and intending is how I re-generate my power, my hope, my energy to be the best cheerleader, best cook and bottle washer, best comforter I can be.

    So, dear Emma, I’m here to say that you accomplished a whole lot last week, and if you had a chart whereupon gold stars could be pasted, you’d get one for each day! Do your best each day, whatever that is, and know there are a couple of folks out here who simply say, “Great! To be is really enough.”

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