Blog number 7: Scream, shout, blog it all out!

Boy, I've gone through a gamut of negative emotions tonight; I've wanted to scream and shout and run away from my life (in fact I did do some shouting and swearing which is not ideal in front of my daughter, but trust me, it was not planned, and we've all been there no doubt).

It's so strange because it's felt like surface emotion, as in, knowing deep down that things will be okay and are in fact okay right now, despite the tears and temper. And yet it's still so important to rage and express yourself in those moments, to recognise that anger is not a dirty word, but in fact a sign of hope; of wanting things to be better. Anger can propel us to do things, to want more. I always feel it's the polar opposite of depression, which constricts and binds you to slow you down.

So I thought I'd blog it out and see if I can do something productive with the emotions and frustrations. Productive in two ways; in terms of personal expression, and also in terms of putting real stuff out there because it might affect, influence or amuse someone else, or even inspire somebody with troubled emotions to write, or help them realise they are not alone in their frustrations.

I thought it might help to divvy up the things that are affecting me at the moment, to make it all clearer and not so much like one big clumpy mess. First and foremost, I'm grappling with daily chronic exhaustion, affecting energy levels, motivation and mood quite seriously at times. It ebbs and flows, and there can be stressors that make it worse but it's also without rhyme or reason at times. It makes no sense to me how I can be aching and paining for three days in places I've not exerted as far as I know, but then following a bit of walking, yoga etc, I feel not too bad. I can want to stay in bed for two days straight and not see anyone, and not be able to focus on much, following a wonderful weekend with people I really care about. Socialising can feel stressful because I feel I have to put a 'happy' face on when I just want to grump and slide about and mope and do what I want to do in the moments I want to do them. Sit and write with coffee at 1am, watch a film and cry, do internet research on sensitive subjects. Etc.

Fatigue makes you feel so selfish, which is hard when you're a caring, aware person.

The fatigue affects everything else; it's like a domino effect. It makes parenting my young child extremely stressful at times, and parenting a young child can be hard enough as all parents know. I want to be a loving, open, educational, fun loving parent, not a crying, slurring, lying down frustrated mess. I'm glad my daughter is old enough to understand that 'mummy gets tired' and she'll happily bring the Samsung tablet into the room and watch her cartoons cuddled up next to me, when I'm too exhausted to move. However I don't want her to feel responsible or like my 'carer.' It's so tough.

My fatigue has lasted around 8 years now, since I had my daughter by traumatic emergency section. I sometimes wonder if the two are related. Ironically it's made my insomnia and sleeping problems worse. You'd think fatigue made you sleep better, but oh no. You crash out when you need to, when your body gives you no choice, but you're still exhausted. I was put on oral chemo 6 months ago which is still very hard to talk about because I don't have a well known condition that people recognise. I have a rare, confusing chronic illness that even doctors cannot pronounce properly or agree on how it should be categorised.

To put it out there and spread awareness, I have a disorder/neoplasm called Essential Thrombocythaemia, which is basically where the bone marrow is producing too many platelets. It was diagnosed relatively quickly using blood tests and an unpleasant bone marrow biopsy (for which I'm grateful to our NHS – many people in America cannot get the tests needed, and have to pay for them themselves). It has clogged up my spleen causing it to enlarge, reducing my appetite. I've lost over a stone and a half in the last year. I look shockingly skinny in photos, despite convincing myself I still have a massive bum in reality.

My Haematologist claims “we don't call this cancer or the treatment chemo as it's unhelpful.”

My doctors are confused as to what this disorder actually is.

The World Health Organisation now classifies this condition as a rare, chronic blood cancer, NOT as a disorder. It feels so good to write all this, and I hope you can feel and understand my frustrations at the lack of one, single classification. Macmillan have been amazing for support. For months I was told I didn't have cancer, but am being treated on a cancer ward and I felt like a fraud. The main immediate risk of ET is of thrombosis (blood clots) and strokes, so the need to stay healthy, active where possible, and not smoke, are important. So I'm glad I began this journey in a healthy place where I was active and still am (as far as fatigue allows), a relatively healthy pescatarian, and have never smoked. I probably eat too much cake, but hey, we all have our vices.

It's now affected my financial situation, as I've had to stop working as a life coach. I'm really glad I made my Youtube channel and have a legacy of just over 200 videos behind me, with the aim of helping other people. Dealing with various benefits agencies and going down the disability route has taken weeks and weeks and will take more weeks to come; it's terrifying, uncertain, and nobody can seem to give you a definite answer regarding how you're expected to carry on paying your bills. All you can do is “make the claim and wait and see.”

There have been strange benefits to becoming ill. Maybe my positive attitude and desire to learn in life, has helped me pinpoint the positives. I had the urge to express and write again, and restarted my blog. I'd written one or two blogs last year, and wanted to make it a more frequent and immediate and emotional resource, a way of contributing to the world, to dialogue and to conversations. People started telling me how wonderful and expressive my writing was, which made me very, very happy. I live in the moment more, and enjoy and appreciate the little things. My prognosis is good, but I'll likely be on chemo for life, with a small risk of other complications from the treatment itself, and a small risk of illness progression. 

However for now there is a lot of joy and love in my life to counterbalance the hard stuff, and it's felt really good to document some of the bad as well as the good. I feel very blessed despite my struggles. I've been given a real incentive to get a lot of baggage sorted, and to release myself from situations that are hurting me.

I met the love of my life at the start of my chemo journey, after my medical realisations prompted me to finally end a long term toxic relationship with a person who was causing me great psychic harm. I have my illness to thank for that, as well as my own courage. My new love provided more care, support, patience, and unconditional love in the first few weeks of our dating, than the previous person ever did. He loves me throughout; with my face on, and without. With money, without. When I'm happy and laughing, or not. With thick hair, and after my hair thinned due to chemo and I asked my mum to chop it short. He told me he would love me if I were bald, because I'm beautiful inside and out, and that, Dear Friends, is the only type of person you want loving you.

Adam – I love you heart and soul.

Ellie – my beautiful, loud, creative and loving daughter: I'm so proud of you. Even when we drive each other up the wall.

I apologise for the length of this blog; it's really helped to get all this out. Hope you've been sat comfortably with a nice drink!

With love always,

Karen xxx