My Story

Fear and Relationships

Each time I write I have to be willing to open myself up and with every post that I write I cry without fail, and I’m sure this one will be no different!

The best time for me to write is usually at night because I know no one will walk in on me crying and I can fully concentrate on my thoughts and feelings. It’s less painful for me if I write it in one go too, as I don’t want to dwell on certain parts, I’d just prefer to get it over and done with. That sounds like I don’t enjoy writing my blog, but I love it. Each post I learn something new about myself. I gain clarity once I’ve written it down and tried to explain it. Writing is my way of dealing with what has happened to me.I need to be happy and assured within myself, as if I was bitter or upset, it would reflect in my writing, which would probably lead to loads of ranting and useless information. Each post has points that I’d like to cover, inspired by my day to day life. They’re mostly things I want you to know about MND and my experiences and that I think you’d find interesting. If there’s any points to do with MND and my fight that you’d like me to talk about feel free to inbox me and I’ll try and cover it when I feel comfortable discussing it.

I was asked during an interview for the Press and Journal, what made me want to start writing. I write so that my readers can understand and begin to imagine what life is like with a terminal illness. I hope that one day when someone is searching through the internet looking for answers about their terminal illness (as I did when I was diagnosed) that they come across my page and realise that life does continue after the diagnosis. Of course it gets harder, and some days you want to just stay in bed and be alone and forget the injustice of what has happened to you. However, some of the best memories I’ve gained are from this past year!

Sometimes I question whether what I’m doing is right. Do I want to make myself a public image of MND? Every time I question myself I just have to look on social media and each time I come to the same conclusion…YES! Over the past year I’ve achieved unbelievable goals that wouldn’t of happened without making my condition public knowledge. Before my illness I was a private person and didn’t use social media as it wasn’t really my thing, now I’m posting about things that I’m doing. It’s getting easier but I don’t think it will ever become second nature! Through my blogging I’ve had people say that I’m an inspiration, but I don’t feel like one. Even being praised throws me off, as I’m not used to it. I wish doing interviews and accepting praise came more naturally to me but I just become shy, which is frustrating but a new learning experience. I just hope it’ll get easier with time and that I’ll get used to writing and talking about myself! I want to be worthy of being called an inspiration and to make myself proud and be comfortable with what I’m doing.

Fear and Relationships

My biggest fear is falling over because in that split second I’m powerless and helpless. I swear falling over is MND’s way of just reminding you that it’s there! On the occasion I do take a tumble. There are 3 scenarios: 1- I literally laugh it off because I’m happy that it didn’t hurt and I got scared for nothing (this one is my favourite), 2- I’ve hurt myself a little bit and just want to carry on with what I’m doing so I just want to get straight back up (no time to lose!), and 3 – I’ve done some damage, gone light-headed and my muscles are crazily twitching that I have to stay on the floor. With the third option, once I’m finally up I’m unstable for the next day or even the next week. My walking confidence is gone and I rely on people or objects to get around as my risk of falling is higher. Majority of the time it’s the psychological side that takes me the longest to get back to normal, as the fear of falling keeps me from trusting my body and balance again. It’s frustrating because no matter how physically strong you are, you’re lost without being psychologically strong. 60% of the battle is psychological for me.

The hardest and most soul-destroying part of MND, is how I’ve had to watch while all my friends and family deal with my illness. It’s heart-breaking and for me it has been the worst part off my disease! Each loved one that you have to break the news to causes a little bit of you to disappear and by the end, you just put yourself into auto-pilot so it doesn’t hurt as much. Realising that my new life expectancy age is 22-24, I’ve just lost 60 years in the space of 30 seconds! How is that even possible? My closet loved ones are the ones who it’s hit the hardest.

Watching my dad deal with my illness has been one of the hardest. Before I was diagnosed I’d never seen my Dad cry. I had seen every side to him, but never sadness. It’s something I wish I had never seen, because seeing the man who taught me to ride my bike, cook and the benefits of hard work, crying broke my heart. Knowing that I had caused his tears and couldn’t do anything to fix it! I was powerless and I hated it. No child should ever see their Dad cry, no matter their age, because I’m sure it hurts just as much at 30! It’s been hard for me to watch my family come to terms with my illness, as each one has taken it in a different way, so I’ve had to adapt to each family member. It has been tough but it came more naturally than anticipated. The hardest bit is that no-one understands my situation no matter how hard they try, as all relationships in my life have had to change because of this disease.

My best friend also took it hard and you’ll hear her story once she’s ready. Kim and I grew up living across the road from each other and have been best friends for 15 years. As you can imagine we’re extremely protective of each other. We know everything about each other because we’ve done almost everything together. Nothing in our 15 years has come close to breaking our friendship, but my diagnosis almost did. For the first three months we didn’t really talk about it because it was too raw and I wasn’t coping with all the changes and reality. Last year Kim came home on Valentines Day to surprise me and that’s when reality finally hit her as I was having trouble walking. Once it became real for her, it became more real for me too, as the changes are slow for me so I don’t always notice, whereas for her every time she sees me I’m worse. We grew apart by pushing each other away. We tried to carry on being the best friends like we’d always been, but it’s hard when everything’s changed. In June we went on holiday together, which probably saved our friendship as we started to talk about my illness, as well as us fighting like we used to. The fighting actually helped as she finally started to treat me normally and not as someone who’s ill! This might seem stupid, but you’d be surprised how many people do it. I’ve always been able to hold my own in an argument and just because my body’s giving up, it certainly doesn’t mean I am! I’m the exact same stubborn young woman that I was two years ago but now I’ve got a funky walk! The fight allowed us to go back to being us. We’ve had a few more problems along the road, we’ve cried to each other a lot about this illness, but we can’t discuss the future that we’d planned together like we did when we were younger. It’s hard for me to know that I might not always be there for her, to give her advice or talk her out of being angry with someone…or to just wind her up when she’s stressed. I know neither of us will find another relationship like ours, as you only get one soul sister! I love you Berly!

Motor Neuron Disease doesn’t just steal away your body, it takes friendships away too. I’ve lost a friend during this illness because not everyone can deal with it! Loosing someone makes everything harder, as there was a space in my life where they should have been. I completely understand that watching someone you love become fragile is hard, but I need my friends around me more now than I have ever before. If you can’t step up during someone’s illness, that’s completely understandable, just step forward and let them know you’re still there, rather than a step backwards in denial, as once you do that everything becomes harder to overcome for both of you!

When I first started writing this piece I thought that it was going to be straight forward. It started off as one of the quickest blogs I’d written. but it soon changed as I started to write about fears and relationships. It has become the hardest blog to write and the one which I’ve cried the most writing. I kept re-writing each paragraph and re-reading them to make sure they were right and portrayed correctly how I feel and my experiences, and allowing me to reveal another part of myself. Hopefully I’ve done an alright job in getting across to you all how MND is affected my life and the lives of those around me.

I’d also like to thank one of my best friends, Lucy, for being my spell checker and keeping me sane during each blog! (You’re welcome – Lucy ‘The Spell Checker’)

Remember to share my blogs please!

Lucy x