Mirror Mirror on the wall - When you don’t recognise the girl looking back at you in the mirror anymore? It’s not a vanity thing as I’m now 41 and so I’m under no illusions I’m aging but who the “F” is this person in the mirror staring back at me. I no longer recognize the woman looking back at me, she is a broken woman, a shadow of her former self. My body has endured so much in the last 20 years I’m like “wtf” who are you? Plus, to add insult to injury when you have muscular dystrophy, you’re not allowed to have Botox so it’s 100% the universe telling me to go fuck myself once again. So here I am stuck with my all-natural resting bitch face.
I spoke before about being haunted by my illness, but the ghost of my former self is a different beast altogether. I have so many side effects from cancer treatment and other medical problems that it’s just not the muscular dystrophy that’s wrong. I won’t bore you with the long list, but it just feels like sometimes my life is an endurance test. Whoever has the voodoo doll of me that’s sticking in the pins could you kindly just give me a break and just stop. So, it’s 4am in the morning and once again insomnia and my thoughts keep me awake. This is the time of night when the hamster in my head starts doing summersaults. When the 3 out of the 4 voices in my head wants to sleep and when the 4th voice wants to know “if penguins have knees”. Don’t worry I’m not losing the plot just yet. Insomnia is a well-known side effect of some of my medication otherwise even I’d be worried about myself. I’m either hyper or wrecked tired. It’s a hard one to balance, and nothing is more frustrating than lying in bed wide awake listening to your husband snoring beside you like a freight train, his lucky I love him as some nights you’d be eyeing up the pillow.
So, what do I miss and who is haunting me and keeping me awake? The memory of my former self before I started losing my independence. I miss the young girl who hadn’t a care in the world. The adventure seeker, the girl who loved the outdoors especially the countryside. What I really miss is being able to walk my dog or hopping in the car and going off traveling on my own. It’s the simple things in life that I miss that everyone else takes for granted. I’m still trying to find my feet and navigate the life I have now. I don’t think people understand how stressful it is to explain how sick you feel on the inside when you don’t always look sick on the outside. Dealing with the pain is the easiest part. The hardest part is dealing with all the emotions and understanding I now have limits. I need to accept and learn that I have lost my health and its normal to feel crushed by the enormity of it all and to be devasted by that. Some days only for PJ I don’t think I’d bother leaving the house. I get days, I don’t want to leave the safety blanket of my own environment. Other days you feel like you want to run away and hide from it all.
I recently went to get my hair done while home in Ireland and booked into a salon I’d never been to before. I stupidly didn’t realize the salon was up two flights of stairs. I just presumed it was on the ground floor. Only for the fact my hubby was with me no way would I have managed to make my appointment. I struggled with every step but as a woman nothing motivates you more than a fresh colour and cut. I literally hauled my fat ass up those stairs. Once I reached the top my husband just looked at me with a smirk. I know he was proud, but he was also being sarcastic with him saying “that was better than any physio session, and now wasn’t that worth all the effort”. In fact, he was so right it was worth the struggle if only for the sake of my vanity and wanting to try and look and feel normal. We all desire to have the Instagram picture perfect life, but we all know that really doesn’t exist 24-7. People only give you the illusion of them living their best life but it’s only a snippet of the best bits they are willing to share, and that they want you to see.
When I started this blog, my mission was not to sugar coat my life. It was to talk about my life living with a chronic illness and to show the vulnerable side of me, and not the fake smile I so often hide behind. This is my outlet, it’s my therapy this is we’re I offload all my fears and learn to process my thoughts. I just want the people who know me and those open to reading my blog to see and try to understand me and my illness. I know people judge me when they see me but I’m hoping this will let people see the real me. I am more than just the “chick with the stick”. I know all too well I can come across as sassy and hide behind my sarcastic attitude but sometimes it’s just my way of coping. It’s easier put up a hard exterior and pretend you’re ok than let people see the real true vulnerable scared version of yourself.
The only person who really gets me is PJ as his living this life with me. Sadly, he bears the brunt of my frustrations and it’s true what they say, “you do take it out on those that are closest to you”. So yes, he gets all the Siobhan’s the good the bad the ugly the moody and the gobby one. I just hope he knows how much I love him, and I appreciate all that he does for me. Not only am I his wife I am also his work wife. Is it any wonder he loves golfing so much and enjoys the break away from me for a few hours.
Recently a friend of mine who is reading this blog sent me a message to say well done on being so honest, but I come across as aggressive towards my disease. I know this as I hate this disease as it has not shown any sympathy towards me. Muscular Dystrophy comes in different forms, and it is an aggressive disease as it eventually takes everything away from you. I am sadly fighting a losing battle and there is only one winner and that’s muscular dystrophy. Don’t get me wrong I know I am lucky to still be able to work and travel but I am still working and living my life with limitations. I struggle every day to love the new me and accept the challenges and struggles I face daily. I am only human and it’s hard to accept that this is my new norm. I can see the difference in my abilities to perform the most basic tasks as each year it’s just getting more and more difficult.
Over the years people have told me how good I am doing and how they admire my strength to keep going especially after everything I’ve been through. The reality of the situation is I’m not strong I’ve just no other choice only try get on with it and live my life the best I can. I am always trying my hardest all the time, to push through. Whether it’s trying to manage the pain, the exhaustion, the fatigue, the insomnia, the fear, the guilt, the judgement or just the sheer relentlessness of it all.
A quote I read recently by Bruce Lee which resonated with me was “Do not pray for an easy life, pray for the strength to endure a difficult one”
Until next time,
Siobhan Malone McBarron xo