My Story

Getting Confident with MND

I wish I knew when it started, maybe I could have stopped it. Part of me is annoyed that I let it get so bad. Another part of me is scared that I’ll never find it again. Sitting here writing and I can’t pinpoint when I lost my confidence or my voice. Many of you will not understand and that’s okay, I’m not 100% sure I fully understand what’s happened. I wish I could say I woke up and knew that a part of me had gone, but it didn’t happen that way. Have you ever just known something is missing or that it’s not right. It’s the same feeling you get when you’re trying to remember a particular word or the name of a song when all you have is the tune. Well for a long time I’ve had that feeling just sitting there, I’ve been trying to remember.

Since being diagnosed I’ve thrown myself into everything, mostly because I’ve wanted too and I’ve loved every moment of it. Please don’t think I’m ungrateful because I’m extremely grateful. The other reason I’ve thrown myself into everything is because I was hiding from accepting the new path I was on. The path where I have MND, Where my situation won’t get any better unless a miracle happens. I’ll never stop hoping for the day a cure is found. It’s hope and dreaming of a future free from MND, that keeps me sane. However, at the end of last year I stopped avoiding my diagnosis and I started asking questions about my MND. Some of the answers were hard to hear and some even harder to imagine but I’m so glad that I was finally brave enough to ask them. It was the first step to concentrating on me.

‘Muting’ my voice.

It’s crazy to think that for so long I’ve been scared that MND will take away my ability to talk. That it would leave me unable to make a sound. Turns out there’s something worse for me. The ability to talk but the inability to use my voice. Maybe that’s why I haven’t written in three years.

There’s a saying ‘if you want something done right, do it yourself.’ Everyone has there way, of doing things from cleaning to cooking. I’m no different but what happens when you can’t do it yourself? I’d known for a while I’d been ‘muting’ myself. I’d know someone wasn’t doing something correctly and instead of commenting and telling them I don’t do it that way or that’s wrong. I’d just sit there and say what I wanted to say in my head. Hoping that if I think it and it doesn’t sound too demanding I’ll say it out loud. Most of the time I’d leave them to do it there way as I’m just grateful that it’s getting done and it’s easier. It’s exhausting constantly explaining how you like things done. I need help with everything from getting up in the morning to going to bed at night. There have been times in the past when I’ve thought that I was a burden. Looking back now, I get it. I felt that I took more than I gave. I now know that isn’t the case.

I wish that was the only time I’d be ‘muting’ myself. Going out is always risky for my mood. It just takes one ignorant person to put a grey cloud over a situation. It’s unbelievable how many people in the customer service industry won’t make eye contact with me or will keep asking whoever I’m with the questions, even though I’m answering the questions. My family and friends have actually had to say ’She’s right there ask her yourself.’ or ’She’s telling you, Listen.’ When so many people dismiss you, you begin to dismiss yourself.

Recently I went to a restaurant with my sister and her girlfriend. It was my turn to order and I had to relay everything I wanted to my sister because the waitress wouldn’t take the time to listen to what I wanted or even walk around the table to hear me better. Normally I’d just ask the waitress to walk round the table but I didn’t want to put up with the awkwardness. After all of that, mine was the only order she got wrong. Situations like that made me embarrassed of being in a wheelchair and it made me think that I was unapproachable. I had to remind myself that it’s got nothing to do with me, It’s because they don’t know any better. People I’m with get frustrated and angry, and I don’t blame them. It must be hard to watch. With everything in life you get the good with the bad. I’m always so grateful to the people who open doors and go out of there way to help me when I need it. I’m most thankful for the people who talk to me like the human I am, the people who see past the wheelchair. Those are the people who keep me smiling and make the biggest impact in my life. Being in a wheelchair has made me realise how much a stranger can impact someone’s day.

Self-Confidence.

Self-confidence ’The feeling of trust in one’s abilities, qualities, and judgement.’ I’ve always known that confidence is something you constantly need to work on. Maybe that’s why I’ve always struggled with self-confidence, even more so now that I’m in a wheelchair. For me, my wheelchair and I have a love/hate relationship. I love how it allows me to get out and about. I love that it makes me independent in my flat. That’s where the love ends, the dislikes on the other hand are endless. My biggest dislike is that it makes me feel insecure, which I know makes no sense. How can an inanimate object make you insecure? But for me I’m more confident and comfortable out of my wheelchair: Fact! Which isn’t good for someone who now spends around 10 hours a day in a wheelchair, there’s no wonder I lost my confidence. So I did the only thing that I could think of to stop me feeling insecure in my wheelchair. I embraced it. I stopped transferring out off it every opportunity I got. It took me a while but when I started working on me everything fell into place.

Working on me

Once I realised I’d lost my confidence I started working on me and who I was now. I started to find myself again, my only goal was to get happy and healthy. So I went back to basic’s, I started to concentrate on what made me the happiest. Many of you will know my biggest love…food. Ever since I can remember, I’ve loved cooking and eating food, especially eating it. I always enjoy food more, when my family, friends or I have made it. For me there’s something so satisfying about cooking and eating food you’ve made. At this point I knew three things, firstly I was moving out in the near future, secondly I was a vegetarian and lastly I wanted to be body confident. I began by concentrating on eating healthy by cooking healthy lunches. I started off by cooking a spicy lentil and tomato soup, what a lot of you don’t know is that I’m a bit of a spice freak. I’ll put chilli flakes on anything and everything from poached eggs at breakfast to vanilla ice cream. After I made a big batch of the soup, I started to get up in the morning excited for lunch. To some people this will seem silly, but I hadn’t cooked in over 3 years and something so simple as getting to eat the soup that I made for lunch made me so happy. It felt as if I’d achieved something big. Straight away I knew I was on the right track and started to make more spicy lunches.

A year on and I’m tracking my macronutrients, cooking all my meals from scratch and meal prepping like a pro. I know what agrees with my body and what doesn’t. Turns out meat doesn’t, which is why I’m a vegetarian. I’m so much happier knowing what’s going into my body. Now in my flat, meal prep and planning my food for the week is now one of my favourite things to do every week. It makes me so excited for the week ahead. It also saves me a lot of time and means I can do more.

The next love of my life is exercise. At the start of 2017, when I started going to the gym, it helped me get out of my head. I’d put my country music on and cycle my little legs off. When I started going to the gym, I thought that people would just know I didn’t belong. I soon realised that no one cared. They’re all the there to get fit and happy too. The more I went to the gym, the more confident I became at the gym, so I started weight lifting and fell in love with it. After a year I’d seen a huge change in the amount I was lifting and some of the machines that I couldn’t do a year ago I can do now. So in January I decided that I’d start pushing myself more at the gym. I went from spending most of my time doing cardio to spending all of my time weight lifting. I’m now able to lift more than my own body weight with my legs. For a girl who can’t walk unaided, it’s pretty impressive. I’m now able to lift a third of my body weight with my arms. My goal is to be able to lift twice my body weight with my legs and lift my body weight with my arms. I have no idea if it will be possible but I’m going to have lots of fun trying. The stronger I get in the gym the more empowered I feel outside. For me the gym is my happy place, on a bad day I go to the gym and if I can’t leave the gym feeling happier, I know that it’s a bed day. I’ll do everything I need to do and curl up in bed and watch movies. Before the gym I’d have a lot of bed days in a week, since moving out I’ve had one.

Moving out!

I began to see the biggest change in my confidence when I started the process to move out. I absolutely love my parents. They’ve spent the last 4 years taking care of me and driving me around the country. My mum used to take care of me all by herself, it now takes the equivalent of three people to do what she used to do. When I decided that I needed to move out, I started the paperwork and knowing that at anytime I could back out made it less scary. I knew I wouldn’t back out as this was my next adventure. A way to get my independence back. It was a way back to my parents independence too. A way for my parents to be my parents again. In February I got an email off my social worker telling me that she’d possibly found somewhere in Elgin for me. Later on that week I was offered the place. Four months later and I moved into my new place. When I moved into my flat, something clicked in me and everything changed. I had a future, for the first time in 4 years I was looking forward. I was excited about what the future has to hold for me. Don’t get me wrong, at the start I was a bit lost, I had no idea what to do and I found the weekends when I didn’t have Zeus (My dog) really hard. Once I got into a routine and found the most amazing dog walker, everything changed. I love my new place and everything that comes with it. I love having games night with my friends every Tuesday. Every morning I wake up excited, especially on a Monday! I must be one of the few people who loves Mondays. I get to plan my meals for the week and get to go food shopping. Every week day I get to go to the gym and get to take Zeus on his walks. I know I find the little things that many people take for granted so exciting and I’m okay with that. It’s probably because I don’t have a job to go to, but then again I’ve loved every job I’ve had. I love the freedom my own place gives me.

Reflecting!

Looking back now I can’t believe I lost my voice or my confidence, but I get it now. At the time I was so lost and unsure of who I was and what I wanted, that I had nothing to say. Working on me has allowed me to start believing in myself again, which has given me back my confidence and my voice. I even feel confident in my wheelchair something I never thought would happen. Don’t get me wrong it still makes me feel insecure in certain social situations but even then I can talk myself round. I have a new happier lifestyle where I keep fit, eat healthy and laugh with my friends in my new flat. You never know I might even start dating…

Smile more and laugh always!

Lucy x

No Comments Found

Leave a Reply