Woe is Me

And so my thirtieth birthday has passed by, and with the beauty of hindsight, I can tell you that it really was not that bad. It is important for me to keep you updated on the fact that I had a whole week of feeling special and loved, because my last blog on the subject was rather negative. Also, everybody just loves a boaster. I am a boaster.

After I expressed my distaste for my birthday and said how it reminded me that I was going to die and miss out on a future, I received a comment on my blog telling me that I should stop with the ‘woe is me’ comments.That was not the opening comment, oh no, I was profoundly told that my life is what I choose it to be and in order to fight myeloma, I had to ‘start with a decision to do something’. The gifts just kept on coming, and I was advised to not feel sorry for myself, and to achieve this, I should live my life by being active. By ‘active’, the suggestion was that I could ‘walk, run or bike’. It concluded, inspiring creators of memes everywhere, by saying a ‘death sentence’ means that I have time to ‘live before X day’. And so, I was ordered to ‘live it’. Exclamation mark.

Inspired, enlightened and motivated by the kind guidance a lesser person would consider a sales pitch, I decided to avoid my blog for a few weeks to allow myself the chance to ‘live’. I mean really live. I have after all, spent every day of the last two years in a self indulgent, wallowing pit of despair, not affording myself the opportunity to really live. The advice, both insightful and medically responsible, came with a slogan of ‘Nutrition + Fitness = Health’. POW and WOW.

I acknowledge that my last blog about turning 30, was not something one would read to a four year old as a bedtime story. It was angry and pessimistic. It was also needed. They were the thoughts I had in the lead up to my birthday, and I needed to voice them by writing them down and then dumping them into the internet ether. It is how I manage all my negative thoughts and it then allows me to see the positive. After I pressed publish on the morning of the 24 May, do you know how many other times I have entertained thoughts about my premature death and never born children? Not once. Not at all. Not even. Those thoughts are hopefully not to be seen again until the 17 May 2015. With the thoughts banished, I was able to just enjoy the things I used to love about my birthday. Enjoy it I did, and it lasted for 9 whole days.

‘Living’ is grand. I spent the afternoon of 24th May until the afternoon of 27th in Berlin. There, in lands all so foreign, I was able to do my best impression of a middle aged American tourist whilst the people I travelled with did their best impression of something else entirely. My eyes, once again, were able to see things they have never seen before. I relish that, more than jogging. As much as my innate pessimism loathes me to say it, I had fun. Boy, did I walk straight into ‘living’.

Inevitably, in the immediate days after my return, I required rest. I rested because I felt sorry for myself and not because it is an essential part of my ability to function. I was tempted to go on a bike ride, but I have been limited to four five minutes walks a day by the people who are medically trained, so I chose sleep instead. The rest days also involved some working, because I am hell bent on giving up and I only need money to fund my Netflix account.

Sandwiched in between the birthday fun times, was a doctor’s appointment and a dose of Velcade. Velcade as you all know, has such positive side effects, that any one intent on giving up on life, will benefit from intense neuropathy, fatigue and nausea. I do not go every other Friday to have a dose of Velcade and feel this way, because it will buy more more time until X day.

In the days after my rest time, I was treated to a myriad of gifts and fun and love. I had a good turn out for my birthday drinks, which was probably just the way in which my friends decided to tell me that I needed to ‘live’ more. I felt spoilt and put it simply, I loved it because I love me. There is nothing better at making one feel wanted in the world, than positive attention. Lots and lots of positive attention. 💖💖

It has been two weeks since I said goodbye to my birthday for another year, and in the time since then, I have once again fallen into the pit of self pity that is my myeloma consumed life. My self pity looks like me working, the occasional act of socialising, a Q&A at the BFI and Mum Love. I have been incredibly hard on myself.

To be clear, there is absolutely no way in which I feel like I have not been ‘living’ or trying to live, nor do I feel like there is any decision for me to make. I will say this once, I am incredibly proud of the way in which I have conducted myself since I was diagnosed. I have managed every change, every hurdle, every bunch of fives, in a way that works for me and I hold my head up high as a result. The hurdles, by the way, includes when it has become apparent that I can no longer ‘live’ like I used to. Occasionally, I will have a bad day, or if last autumn is an example, a bad few months. When the bad mood wafts over me, it is not about me being melodramatic, it is me being truthful. I have bad thoughts and the worst thing to do is to pretend that they are not there. I might, for example, have some really bad thoughts about the fact that I cannot, for medical reasons, walk, jog or cycle or even worse, have thoughts about being told that doing these things would improve my ‘life’. I might have to voice this anger, but once I have, I will move on until the next thing happens that tries to pull me down. I will manage that in turn.

Maybe it is a flaw in my personality, but I will not accept any criticism on how I behave or how I act on the subject of myeloma. It is life and I will deal with the daily reminders however I see fit. I made my decision a long time ago, and that decision was to do exactly what I am doing. I have made concessions, I cried in my bed and contemplated my death. I have also loved and have been loved, I have laughed and smiled, I have found fun in the mess and recently, I have seen places not in my Bermuda triangle. One could describe the above, both the good and the bad as ‘living’, but if I were to do that, I’d probably vomit all over EMan.

All in? I do not think I have done that badly. Also, I cannot ride a bike.

EJB x

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2 thoughts on “Woe is Me

  1. Terri J says:

    All those health nuts are more than likely not living with Myeloma. Yes eating well & exercising will help us to live longer on the most part. But when your bones have been leached of calcium causing parts of them to disappear & they will break at a fall it is hard to get yourself to exercise. Living with an incurable blood cancer never leaves your psyche. As the mother of someone with MM it never leaves my psyche. All the meds MM people have to take also takes a toll. So live your life the best YOU can & the way You want to.
    We recently went on a trip. It was to partly show my daughter with MM that she could still travel to Europe. The MM came along as a free ride with us. It showed up as fatigue, limited ability to walk & disappointment in the things you could no longer do. But we still enjoyed & were thankful to be there.
    Don’t let anyone without MM give you any crap.
    This Mother Jones is upset with that blogger.

  2. stephen says:

    Whether living with or without mm, any persons who would tell you how you should deal with your body’s rampaging, all pervasive cells gone wild, have their heads stuffed where the sun does not shine.
    As we say in Boston, when addressing the superior feeling presumptuous ones, ‘Frack ’em!’

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