My Gospel according to me, My Life, my words, my journey!
“Journaling is like whispering to oneself and listening at the same time”.
I write because I don’t fully know what I am thinking and feeling until I read back what I have typed on the page in front of me. I have said before that this blog is my outlet and my therapy session. It is my safe place to say out loud the things swirling about in my head. I struggle some days to overcome many obstacles especially the ones within my own head that are causing my mind Fuck. It’s a mix bag of all my fears, frustrations, anxiety and where I mourn the loss of the old Siobhan.
The last few weeks the insomnia has been bad, which makes the muscle pain feel 100 times worse. When it gets bad is when I feel like I’m running on empty. Sleep deprivation is no joke, as my dad would say I am like a little weasel when I’m tired, as I don’t cope well with little or no sleep. This also is when I am most at risk for injuries as I am known to fall when I am tired so your high risk for accidents. My husband has told me on several occasions that I am an emotional wreck when I am tired and even more so after a few glasses of wine. I think this is because I don’t have the energy to pretend or the ability to control my emotions fully when I am exhausted, and alcohol is also known to heighten people’s emotions.
I have at several stages over the last 20 years been offered counselling sessions. First when I was diagnosed with muscular dystrophy, after my car accidents, (side note neither car accidents were my fault, I was just in the wrong place at the wrong time) then again with my cancer diagnosis and before both of my surgeries. I’ve never been comfortable with the idea of talking to a stranger and letting them inside my head. Firstly, sometimes I don’t even want to be in my own head, let alone let someone else in there as far as I am concerned it is crowded enough. Everyone is different and you need to find an outlet that suits you best. Before Muscular Dystrophy exercise was my outlet but that over the years has been taken away from me. I have since then discovered writing is my new therapy. I get a sense of relief from it. Too some they might find this strange, but for me when I type this blog with every click on the keyboard, I find my stress and anxiety reducing as I am processing my own written words and my deepest thoughts.
I know some of you may be asking yourselves so “why does she publish her blogs”?
It’s an easy one for me, I do it because I want to try stop some of the rude comments I have encountered. Sometimes people judge you, especially on nights out when they comment should you be out if you’re not well. I can’t for the life of me understand why some people are of the opinion that I should hide myself away or not have a social life just because I am sick. Why I must justify my reasons for trying to live my best life. I hope my writing about living with a chronic illness will help raise awareness and help to educate people to be respectful when addressing other people’s health issues. The more people that hear about my type of illness “Muscular Dystrophy” that I hope they will understand it.
“Muscular dystrophies are a group of muscle diseases caused by mutations in a person's genes. It can affect several body tissues and organs; it most prominently affects the integrity of the muscle fibers. Over time, muscle weakness will decrease mobility. It makes everyday tasks difficult and affect the patient’s overall quality of life and it deteriorates until they eventually succumb to the disease. To date there is no cure for Muscular dystrophy”.
I am trying to keep this blog as honest as I can, but I know myself I am not always being 100% honest all the time. I am still at the stage where I still feel the need to protect some people who are reading this, like my close family, friends and sometimes even myself. PJ has chosen not to read this blog. PJ is living this life with me, so he says he doesn’t feel the need to relive it by reading my blogs, and that is his choice and I understand and respect that. At the same time he is the one that encouraged me to wrIte this as he knows I find it therapeutic.
Before this blog nobody knew about the melt downs, I have had when I am alone. They only knew the smiley, happy, sarcastic Siobhan as this was the only version of myself, I was willing to show them. So, believe me when I say some people aren’t all that they post to be on social media, it’s very easy hide behind a screen and a keyboard. I think for peace of mind and clarity we all need to try being the real authentic us no matter how hard it is to accept and acknowledge.
At present I am struggling with my mental health and accepting my future, and there is no shame in admitting that. At the end of the day, I am human I am not a robot. I am allowed to mourn the loss of the old Siobhan and the life she lived before this disease started to consume her body. Sadly, I think the worst part of people trying to protect or understand their mental health is that some people feel like you need to have some sort of nervous breakdown first to receive or ask for help. This is a taboo that badly needs to be addressed, as over the years I have seen too many people fall victim to this. A friend recently sent me a message quoting his late mother saying “if everyone threw their troubles in to the air and you see them all, you’d only want to catch your own as they come back down. Nobody knows what anyone else is going through, so in a world where you can be anything just be kind.
So, the reason I write this blog is best explained in the quote below from Anne Frank.
“I can shake off everything as I write, my sorrows disappear. My courage is reborn.”
Until next time,
Siobhan Malone McBarron xo