You know life is not fair when your friends are all out traveling and living their best lives, going on mini adventures, growing their families when the reality of your daily struggle is getting dressed in the morning with out falling over.
This is not a sympathy blog nor a pity party, this is the reality of living with a degenerative neuromuscular disease. This is my blog about my body, my feelings, and the challenges I face daily. It’s about two battles the one between my mind and my body. It’s basically a clusterfuck of emotions, frustrations, physical pain and sometimes mental torture.
So, why now tell my story?
My husband actually suggested it as a coping tool to actually express my feelings, be open and allow people in instead of hiding myself away and not to cry in the shower on my own anymore. To let people see the raw vulnerability, not the sarcastic cheeky attitude I so often hide behind. We all have coping strategies and I’ve learnt over the years to mask mine. Only those I truly love actually know the real me. I’ve given so long pretending to be okay that I actually nearly had convinced myself I was when in fact, I’m far from it.
So, what’s wrong with me?
I’m living with muscular dystrophy. The easiest way to explain it without all the medical terminology is It’s a disease that attacks the major muscles in your body. My interpretation and how I feel about it is, it's a disease that basically over time eats away at your body and takes away your independence, confidence and your will to live. Some of you will read this and go "It could be worse at least she’s alive and living her life". Yes, you're right, I am alive but my body is also dying with me stuck in it trying to carry it around. I have the right to mourn my life the one less lived.
I’m stuck in a body with my brain going run bitch run and then I look down at my feet and they are basically stuck to the floor like two big concrete blocks. I no longer can stand on my toes or stand still as my balance is going. I struggle to walk long distances and I can fall at any time without prior warning as my legs just collapse from underneath me. So, unless you have walked a mile in my shoes, don’t tell me how to tie my shoe laces
The background
I found out in my early 20’s I had this horrible disease. I really struggled with the diagnosis in the beginning. I drank my way through the first six months. The only reason I came out of that dark place was due to two close friends that gave me the kick in the arse I needed to sort my life out. I will always be grateful to Ita and Sandra for putting up with me being an absolute prat back then.
Over the years I’ve faced many challenges two bad car crashes, and breast cancer. It’s hard really to say yes I survived all of that knowing full well there is no happy ending to my story. I survived all that to still be left living with a disease that has no cure. Over the years I’ve lost relationships because I struggle privately grieving.
No one really knew it at the time that privately I was in a constant battle with myself. Part of me was still in denial as I was in my 20’s, young, naïve, with a fuck it attitude. Once I reached my 30’s something in me changed. Those previous 10 years were spent with me trying to cope internally, privately with my diagnosis and i found myself trying to imagine what my future would look like. My friends were all getting married and having babies and I was out partying to try mask my feelings, knowing my life was going to be a childless one with me living with muscular dystrophy.
Sometimes life isn’t fair and old relationships are lost along the way. What started out as lust and love in my 20’s over time simmered into friendship. I had to leave a love, I once cherished for me and my sanity. I couldn’t be the person who took away another persons hopes and dreams for a future that I couldn’t see myself living in. I knew what it was like to be robbed of living the life I’d envisioned. In the beginning, It was hard to walk away and leave but I hope one day he will realize I left because I loved him not in a romantic way, for both of us that had faded but as a friend. That person will always be my first love. I just couldn’t love them anymore especially when I didn’t even at the time like or love myself. I just couldn’t see myself in his future feeling like a burden and preventing him from having a family and I didn’t want to jeopardize his future happiness.
Then, when I least expected it and wasn’t looking for it a man entered my life and changed everything. I remember our second date I told him about what my future would look like. To which he replied, "if I have to carry you I will" and to this day he has been my absolute rock and hero and I’m very lucky to be married to him. Our journey to get here certainly hasn’t been easy but I couldn’t imagine my life without him. I never knew real unconditional love until Pj. I’m treated like a princess and he really is my knight in shining armor who rarely leaves my side. I’m truly in awe of his gentle caring nature and I could not of asked for a better husband. We both have our own personal flaws at the end of the day we’re only human but together we work and we’re extremely happy.
Do I feel guilty about our future together? Yes of course I do but as adults we have an open dialogue, we speak openly about our future and we plan together for it. We both know how it’s going to end for me within reason obviously we don’t have a crystal ball but in-terms of my health, we know there is no happy ending. Plus, I will always live with the constant fear of my cancer returning again. It’s true what they say your health is your wealth and until you're sick, you never really will appreciate the true value of it….
Siobhan Malone McBarron xo