The burning question, what is it like to be me at the moment?

Life at the moment, well for me personally is either fraught with debilitating insomnia or extreme sleepiness. My circadian rhythm being completely out of whack. Whilst also feeling somewhat out of touch with the rest of the living world. The horizontal position has become my favourable or should I say most tolerable method of existence. My most pivotal  human interaction being with my close support network and the online community. This new round of treatment has caused my body to be a bit of a minefield, affecting me both physically and psychologically. The pain, inflammation, high temperatures, dizziness, weakness, nausea and itchy skin rashes are driving me insane. At times like this, whilst feeling extremely vulnerable, my mental health takes a serious bashing. It has taken me quite a while to process and understand how exactly I am feeling about life, well predominantly my life at present. It has also taken some deep-rooted pain and emotion to come bubbling to the surface through gut wrenching sobs in order for me to unleash, identify and make some sense of it.

Sometimes I search quite diligently through my mental library to find the exact word or phrase to describe just how I am feeling at any given moment. Sometimes I hit the nail on the head, other times I rack my brain to only discover that there are simply no words. I am a visual person but over the course of this illness, I have learned to portray these images and feelings onto paper. A story is much like a painting, each consisting of a unique plot full of many twists and turns. It would be a lie of me to say that both art and literature exist without the use of raw human emotion. The only way to really resonate with another person is by unlocking and unleashing the rawness inside, something that is specific to each individual. No two stories will ever be alike nor no two paintings. Unleashing the darkness can not only be therapeutic but can result in something quite precious and delicate reaching the light and coming into full bloom. Your own personal darkness can be turned into a thing of beauty.

I am not afraid or ashamed to admit that I am depressed. Nor am I afraid of putting these words down for all to see. I have also developed a certain degree of self loathing. I have always suffered with confidence issues and have always striven to be considered beautiful or to be accepted in this perfection obsessed society. I have tried many times and failed. I have obsessed over my weight, been too afraid to leave the house without my protective mask of makeup on and said or did things to fit into the crowd just to feel accepted. Did I ever understand my value or place in this world? The simple answer is no. Am I trying to now, yes. Is it easy? Hell no! So why have I touched on such a powerful term, “self loathing”. There is no easy answer to this and it has occurred as a manifestation of the many physical and psychological attributions of illness. I know I may seem hypocritical by experiencing such a negative emotion seeing as my blog mantra is so positive but we can’t be positive all the time. Does repeating my mantra in my head on the particularly bad days help centre myself, yes but sometimes no mantra can snap you out of a negative spiral.

So why am I feeling like this and why the hell am I putting it all into words and posting it online for all the world to see? Well it is partly due to the importance of myself recognising and owning these feelings. In doing so I can start to make sense of it all and heal. I am also writing this in the hope of it resonating with some of you, to give someone who is feeling this way a voice. Most importantly to let them know that it is ok to experience this pain and raw emotion. You are not a monster or a social outcast and even though you cannot see it, you are truly valued in this world. You are also beautiful. The older I am getting the more I am realising that what the media and society dictates as beautiful could not be further from the truth. Even though I myself am feeling extremely vulnerable and experiencing negative physical and psychological effects from my illness and the subsequent treatment protocols, I know deep down I am beautiful and valued in this world. Does it hurt that I do not have a flawless complexion or beautiful shiny flowing locks? Yes. Does it hurt that because my body changed and I developed hips, boobages, a bum and a tum that I am made feel fat and unattractive, yes it cuts deep down to the soul. Does it affect my femininity that I have excess hair growth and have not had children yet, yes. On another level does it hurt that I am unemployed depending solely on illness pay, had to move home to my parents house and depend on others to look after my basic human needs, yes. It is a massive blow to my independence, confidence and self-esteem. It is what it is though at this very moment in time. Am I grateful that I have support from people and services, yes hugely grateful but I really want to be able to live again and not have to depend on others.

My desire to be fully healed and self-sufficient burns deep but sometimes no matter how hard you wish for something and try so hard to make it a reality, it is completely out of your control. Your body, even though it is highly mesmerizing and fascinating will run on its own terms and you have to learn to be patient with it. Even though I am experiencing such powerful emotions I always have a flicker of hope inside. To me this flicker of hope is like a tiny burning candle during a power cut where an entire city can be plunged into darkness. This little flame is powerful but must be treated with kindness and nurtured in order for it to grow. This little flame can go on to light many a candle which in turn can light up an entire city. From now on I am going to listen to my body more and give it the patience and kindness it desires. I will constantly check in with myself and ask exactly how I am feeling. We are our own worst enemy at times so I want to try train my method of thinking into the more positive spectrum of things to boost myself rather than deplete myself. I also want to be able to seek professional help and advice if I need it. Sometimes unleashing your very deep intimate thoughts to a trained professional can be liberating in the sense that you do not feel guilty about opening up to them. You are in a safe environment and everything you say is strictly confidential. It is a nice feeling to be able to physically say those hard words to a person and feeling like they do not judge you in the slightest. It is like a huge weight off your shoulders and can help make sense of that spinning whirlwind in your head. Do not be afraid to reach out to a professional for help and certainly do not feel like they would be in any way shocked or appalled by what you say. It may take a little bit of research to find a professional that you feel comfortable to open up to but it is definitely achievable.

Always remember,

Even through illness beauty remains

3 Comments

  1. 3rd May 2017 / 10:52 PM

    You know I live with Chronic Pancreatitis, and just gone through endoscopy & biobsies in the UK, I just want to say to you beautiful ‘this too shall pass’ you will have a good day soon.

  2. 2nd May 2017 / 12:23 AM

    Thank you for your honesty. I’m sorry you are going through such a hard time, both physical and mentally. It’s only natural that when you’ve had to be strong for so long your mental health will take a beating. I hope that with the help you have sought you can fan your flicker of hope and get it burning again.

  3. 1st May 2017 / 3:10 PM

    Hi Avril,
    I get asked to read a lot of blogs, but there was something that made me put down my coffee when I started yours,
    It’s the refreshing honesty on May 1 and this important month for Mental Health. It’s no secret you are a scientist and very intelligent and the piece is excellent. If you are ever looking for a second career, writing, mental Health Advocacy may challenge beauty blogging!

    I’m very sorry you are having trouble with sleep. You are absolutely right re sleep circadian rhythms. If they get whacked, we are in trouble. There’s a Medicine from Eastern Europe now available on prescription here for circadian rhythms. I’ll DM you the name on twitter. Really bed should be only for sleep, but I know enough Lyme warriors that the foetal position is often a must!

    It sounds like you changed treatment plans lately. If you were substantially better before the change, talk to your clinician and revert!
    Otherwise treatment changes can change for 4-6 weeks or longer.

    I hope you’re tackling the depression as if that’s untreated, you’ll be suffering with a lack of energy. Again, we can mention anti depressants on Twitter and not here,

    I know moving home and relying on some social security payments isn’t ideal, but it’s only short term I promise.

    It wouldn’t be right for me to contact on your appearance/body!! But I know one Med I tried added so much weight, Im conscious and hate it
    I am sure you look great.

    For mood
    Here’s what I recommend

    Meds
    Meditation
    Mindfulness / Headspace App I Tunes
    Graded smsll exercise
    Not feeling guilty

    Lyme not to dissimilar to Fibromyalgia

    High antioxidant foods
    Probiotic foods
    A lot of vitamin D
    Magnesium
    Less worry and guilt and stress.

    You’re a great person, this is just time off. I appreciate your honesty and a great way to encourage others too this month.

    Aidan.

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