Marfan Syndrome Awareness Month

Tags

Acceptance, Beauty, Blessed, Marfan Syndrome

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It’s that time of year again, when our hidden condition gets talked about. February is Marfan Syndrome awareness month which means that people are eager to talk about a syndrome that not even all health professions are clued up about, although this is improving slowly. Each person with Marfan Syndrome is affected differently, ranging from mild to severe and every form inbetween. Diagnosing such a complex syndrome is not the easiest for health professions but since I was diagnosed at 4 , this is just my version of what living with it is like.

Life is never boring with Marfan Syndrome around. I mean, expecting the unexpected in regards to health kind of keeps you on your toes and prevents you from taking life for granted. Being a connective tissue disorder means that most parts of your body are prone to playing up, although it is an unlucky lottery to which ones actually do. In general, Marfan Syndrome can affect the heart, eyes, lungs, skeleton and blood vessels but can affect any of the body’s connective tissue. From affected gums and overcrowded teeth to gastrointestinal issues and persistent fatigue, there is no size fits all diagnosis that applies to all. Personally speaking, Marfan Sydrome only affects my sight (registered blind with only partial sight from birth,) weakness in the lungs and skeletal system the most (scoliosis, multiple dislocations, joint pain, breaks and ligament and soft tissue damage). It could be far worse.

Growing up, I looked the odd one out, being the tallest in the class and being really slim with extra thick glasses. Today, you would find it hard to tell I have Marfan Sydrome being only 5’7″ (pretty short for a Marfan’s person), having a body that is built more for comfort than speed (my thin days are looooong gone) and I no longer wear glasses but my white cane and Munch my attention seeking Guide Dog may give others a hint about my sight. In my family where we have several members with Marfan Syndrome, the odd ones out are the ones without Marfan’s.

For me and many with Marfan’s, pain is a normality and I only acknowledge the pain when I am pain free. Joints often hurt, scoliosis sucks and random injuries like to make an appearance but that is just life. I opt for yoga over pain killers to help relieve pain and laughter over sadness of living with something that can be more than slightly annoying. I often forget I can’t see until I bump into something (a talent of mine) and always remember to thank my body for doing such an amazing job of keeping me alive. Yes living with Marfan’s can be tough but it can also be quite beautiful.

If I had lived elsewhere in the world, I may not have been able to have my 5 operations that I have had due to complications from Marfan Syndrome. If I had not understood the importance of health checks from such a young age, I would never have appreciated the beauty of life. If I had been born with perfect vision, I would never have experienced the perfection in life that runs deeper than surface value and would never have been matched with Munch. If I had grown up thinking that I needed to look like everyone else then I would never have developed an unconditional love for all. If I could go back and chose to be born without Marfan Sydrome, would I? Definately not.

Marfan Syndrome is a life long condition with life long lessons. Knowing the symptoms can help to save a life. Unfortunately, many do not find out that they have it until it is too late. Fatal aortic dissections may be the first and last indicator that someone has Marfan Syndrome. Those of us who are diagnosed with it are blessed to have the medical care to help monitor our health and have medical interventions to help us live out life to the fullest and for that I am eternally grateful.

4 Year Partnershipversary.

Tags

Animal, Anniversary, Blessed, Blind, Disability, Drama King, Free spirit, Guide Dog, Healing, Help, Hiden Dissability, Kindness, Labradoodle, Life Purpose, Positivity, Thanks, Unconditional Love, Vision Impairment, Working Dog, Worth the wait

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There are certain dates of our life events that will forever stick in our minds. We will always remember what we were doing, who we were with, what we were wearing or a certain heightened sense that lays dormant in our memory when a key moment in time happened. For me, when I have just finished playing peek-a-boo (which I don’t do enough of) wearing a dress covered in yoghurt and Wotsit crisp crumbs curtesy of my gorgeous granddaughter, in the house full of my noisy family chattering away loudly, I remember the time the phone rang. Here was the change that I had been dreading and eagerly awaiting in equal measures. Guide Dogs had matched a suitable dog for me and wanted to arrange to meet up. Seventeen months of waiting was over. My “unusual” guide dog was ready to change my life forever.

I still remember that uneasy feeling in my stomach after putting the phone down. We had arranged to meet sweet Minster a few days later but I was unsure if I was ready to let the world know that I had a sight problem. When you keep the severity of your disability hidden away from loved ones for so long, the reaction from others is always a fear. What if they do not believe you? Worse still, what if they pity you? What if I did not connect with the dog? What if the dog did not like me? All these fears were just imagined problems that never cropped up anywhere in life, only in my head. The truth was, life was going to change forever, but in the most positively magical way possible.

When Minster (or Munch as he has become affectionately known as) came bounding through the door on November 17^th, 2016, he had decided that this partnership was going to work. He would be the boss from day 1 (apart for in Angus the cat’s world, where Angus remains King) and our training together would go fine. He would make himself at home on whichever soft furniture took his fancy (shhh, don’t tell his trainers), he would command affection by the Royal wave of his paw, create hilarious drama at every opportunity and project his adorable personality to loved ones and strangers alike. He was here to stay and be the neon sign to the hidden disability that I had kept to myself for 38 years. Subtlety has never been his strong point, but authenticity has.

This 100mph couch-potato is the gift that keeps on giving. Giving me immense independence to carry on working and living a full life, seems just a tiny part of this gift. The partnership we have developed has allowed us to go places I would never have gone alone. He enabled me to win Bronze for Wales in VI Bowls, which was only possible after he gave me the confidence to admit that I had a VI in the first place. His extroverted charm enabled us to meet people who I never would have met without this secret weapon to everyone’s soul. He helped me write an award-winning book that would never have been written had my disability remained hidden. To sum up what mind-blowing ways Guide Dogs help their owners (or their maids like in our relationship), is not an easy task but what I would say is this. They are portals into lives that we never would have lived without them.

4 years on and Munch still bounds though life in his puppy like ways, causing mischief and mayhem wherever he goes. Whilst on harness however, he is the perfect poster boy for Guide Dogs, taking his work life serious as he sashays with pride in harness. He has prevented my previous frequent falls and injuries, stayed by my side in hospital after surgery and healed many a broken heart in work and not once has he stopped being a natural born healer. The beauty in his sweet nature is that his loyalty belongs to whoever needs it at that moment in time. It seems that his Guide Dog duties are just one of his life purposes as he glides through life being of services whatever way he can. He is the best teacher that anyone can be blessed to live with in everyday life.

So, thank you Munch for deciding that our partnership would work from day one. You have given so much to me, family, friends, our clients, and strangers alike by never being anything but unconditional love. We still have a few years left of a working partnership and I promise when you do retire you will be even more spoilt than you are today. The doggy kisses and love that you dish out freely will return to you in abundance as your Karmic bank account grows day by day. I promise to up my daily worshipping rituals to you each day and keep telling the world about the superpowers of you and your hero Guide Dog colleagues. Thank you for the eternal gift of being you.

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1 Year Blogiversary

Tags

Achievement, Anniversary, Blessed, Blogging Blogiversary Writing Thanks, Celebration, Gratitude, Labradoodle, Sight Loss, Writing

Here we are, 1 year on, 104 posts published and 1,148 followers on WordPress later. Befuddled is an understatement of how I feel when I think how this happened.

Like most starting out in the world of blogging I had no idea how it worked or how it would turn out but I have always loved a good challenge. I did wonder if writing about sight loss and life with a mischievous, attention seeking guide dog would provide enough prompts to keep the blog alive but I didn’t need to worry after all.

From the start, I have loved reading other bloggers posts and it still blows my mind how each blogger makes such an impact on my life and the lives of many others. Hearing everyday stories from bloggers around the world is far more informative than any news programme can ever tell me about the world. These talented bloggers speak about the true world that many know little about.

The name of this blog came about from living life in the sight loss world, that many in my life knew nothing or very little about. Over the year I have shared stories about little Minster Munch’s adventures and had beautiful comments left on the blog about his typical dog like behaviour that brings a smile to many a dog lovers face. Hearing the amusing stories of other dogs on writers blogs has left me feeling better about the perplexing and comical world of canine behaviour.

The support among bloggers by encouraging each other’s writing is an environment that has to be witnessed to be believed. Grammar police and trolls rarely exist but you can find enthuisiast of the written word and personal cheerleaders in abundance. These are the type of people you could spend all day chatting with and never run out of words.

Thank you so much to those who have continued to read my waffling words and been nothing but kind. Writing two blog posts a week keeps the spirit of writing alive. Never having suffered from writers block only writers diarrhoea, you are very patient people who deserve medals for your patience. Knowing that you want to read about a matching pair of odd socks in the world warms our hearts.

Thank you so much for the dedication you put into your own fascinating blogs. Google would be under threat if you all clubbed together to enlighten the world with your own areas of expertise. Each individual blog can read like a classic book that mesmirises the masses yet is a discovery waiting to be unearthed by that one important person who will make it famous.

With greatest of thanks for following our first year and we hope to share many more years with you. Much love from Munch and his maid.

Everyday Earth Angels

Tags

Blessed, Earth Angels, Helpers, Kindness, Love, Thanks

The phone call that every parent dread arrived. “We are just waiting for the ambulance and he has been immobilized on the field as a precaution” his father calmly said. My son had a neck and back injury in rugby and they had stopped play. My accident-prone youngest son was no stranger to injuries and had called hospital his second home throughout his 15 years. This however sounded more serious than his usual mishaps.
Luckily a friend of mine was able to take me straight up to the rugby pitch 15 minutes away and I crossed my fingers that we would arrive in time for the ambulance. As soon as we arrived his father sent one of the players over to Munch and me to guide us to where he was on the field. We found my blurry outline of a son lying stretched out on the floor with the team’s physio holding his neck still to avoid further injury. Surrounding him was the coaches, some team mates and some concerned parents who had waited with him as they were concerned. The positive about having rugby loving people around you are that there will never be a dull moment as the banter keeps everyone’s spirits high, including my son’s. Nobody feels down on a rugby-players watch.

Attempting to make out which end was his head, and which was his feet, I finally found where his voice was coming from and kneeled beside him. Munch began whimpering and whining as he sensed something was wrong. As he attempted to go over to my son and lick him to health, his held him back and took him for a little walk as I stayed with my chilled-out son. Not even the pouring rain seemed to be bothering my son let alone the fact that pins and needles were spreading across his body. As everyone around him got more concerned during the 2 and a half hours the ambulance took to get to him, my son grew even more chilled out.

The kindness of those around him was so beautiful to witness as they brought him umbrellas to cover him, coats, a sleeping bag, hot water bottles and even a gazebo to put up over him. The physio from the opposing team stayed with him throughout and helped and took over from the team’s physio when she needed a break. Not once did anyone show anything but sheer compassion for my son and genuine concern for his well-being. If angels walked among us, this is what they would be like. The calmness and high spirits that passed between these kind souls kept my son in the belief that everything would be just fine. And it was.
After a neck brace and slide board transported my son by ambulance to the nearest hospital, all x rays showed that there were no fractures despite what was originally thought, luckily just soft tissue and muscular damage was caused alongside a slight knock in confidence on the field. As he waddled out of the hospital later that evening in pain, we all felt blessed that he was okay in comparison to how it could have turned out and feeling truly blessed that he has so many kind people around him that care for him.
Instead of going home for a Sunday roast or sneaking off for a quick pint, they choose to wait with him until the ambulance arrived and did not once moan.

Kindness is not something that has to be planned but something that happens naturally in times when nothing else would work. May each of these earth angels be blessed with nothing but kindness in their own lives as the world mirrors back what they give out. These true Earth Angels are the best.