Tag Archives: crash

That Friday Feeling

That goodness it is Friday. Such is my relief that I have made it to Friday, I will repeat my gratitude for it finally being Friday. I have wanted it to be Friday since Saturday night, and what do you know? The day has finally arrived.

I am thankful it is Friday not because I have had an arduous week at work and I am getting ready to let off some much needed steam over my weekend break, I am thankful it is a Friday because I have had an arduous week in my bed and now, I no longer have to be in there. I knew two weeks ago, as my last crash drew to a close, that I would be unwell this week. I opt to take all my steroids in one go, and I know that the consequences of that is an empty brain and a weak body. It is how my cookie crumbles. Even though I know that a massive cloud will be over me for up to a week and I can prepare for it, it is still an incredibly hard thing to do, and around Monday or Tuesday (days 5 and 6) there will be a point where I want it to end and it is for that reason that I am glad it is Friday. I have another one in the bag, it’s almost a dignified bag if you discount all the talk of poo in my flat this week. I no longer have to worry about how and if I am going to manage my crash. I am glad it is Friday because this crash did not break me. I will have the same goal in three weeks time.

On my new treatment, I have now had three steroid crashes. The drugs remove the brain capacity for me to be able to tell you how many days in bed this equates to. I can tell you that between Sunday evening and Wednesday morning of this week, I existed in the confounds of my flat only, with just a pleasant man and his dog for company. Had I not had to attend the hospital on Wednesday, I wager I could have added a day to that tally. With the three crashes in six weeks, and the ten I had in My Myeloma’s first incarnation, one could say I am an old pro when it comes to how I should manage them. I mean one could say that, whether it is actually true is a different matter entirely. I am being more organised, but the truth is, I get through it on a wing and a prayer. To me, a successful crash is one where I do not allow myself to feel too sorry for my situation. Using that barometer, this crash has been a moderate success.

For the block of days every cycle when my mouth always tastes like tin, the skin around my neck and back feels constantly bruised, I cannot follow a simple conversation, the need but not necessarily act of sleep is my constant companion, my mood has been altered to such a point that the threat of paranoid induced physical violence is never far away nor is the dizzy spell and I am so constipated that a suppository just will not do, I do seem to be developing some key skills and tools to keep my frown upside down. The crash situation is always precarious, but I have found that these few simple things make it much more bearable;

Where possible, I should look after myself, it may not be rocket science but this crash is my job and I want to get an exceeded

• A fully stocked fridge and freezer, specifically with items that can be reheated or prepared in five minutes

• Fresh fruit ice lollies, sour drinks , Starbursts and anything else that will temporarily remove the taste of metal with a hint of vomit flavoured halitosis

• The shower, never underestimate the power of a clean peach

• Getting dressed and moving, even for an hour, from my bed to the sofa is the equivalent of an exhibition and a trip to the theatre during crash week

• Having a Mamma Jones and a Big Sister on the other end of the telephone to chat my gibberish with me

• Colin and Bruce.

• Films from my childhood that have been seen a morbidly obese amount of times

• A tidy and clean(ish) flat

• Funny anecdotes from the outside world, or failing that, people letting me know that they know I am running a metaphorical marathon

• In this heat, a fan permanently directed at the body

• Remembering that it is just da ‘roids and in reality I do not hate myself and everybody else

• The knowledge that it too shall pass and I can make it until Friday

My fingers are crossed that these tactics will work in cycle three. One thing is for sure, in just over three weeks time, I will once again be wishing it were a Friday.

EJB x

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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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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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