Niamh's NMO

What is Spo onie Spotlight?  Spoonie Spotlight is a project ran by @youngpeople_chronicillnesses on Instagram. Our goal is to help shed some light on the stories of people living with chronic, invisible, physical, mental, terminal illnesses and disabilities. These topics are largely misunderstood and we want to help educate others, offer support and give people the chance to find answers. We have posted over 200 stories so far and receive around 5 stories a day, we try to post 2 a day and edit a few a week. As you can imagine that's a lot for our editors to handle so we take our time! Sharing stories is so powerful because it let's people know that they are NOT alone.    Here's how you or anyone you know can share their story. You're welcome to send your story whenever, this project is ongoing so there is no rush! Email it  youngpeople.chronicillnesses@gmail.com. Send us a photo of yourself or something medical related in your life. Include your Instagram na...

My name is Niamh, I'm 15, fromnthenUK and this is my story.  From the day I was born I had issues with my health. I was born with Choanal atresia,  a congenital disorder where the back of the nasal passage is blocked with abnormal tissue. I had it in both nostrils and it was preventing me from breathing. As soon as they realised I was then rushed into surgery for the first of 9 surgeries. By the time I was 3 my surgeries were complete but I still have issues to this day. I have to spray medication up my nostrils everyday to keep them from drying up, 8 can't blow my nose and when I sneeze it's like an explosion.  I spent the years of having surgery  with stents in my nose to keep the holes from closing up, which I didn't enjoy so I would pull them out and frustrate the doctors. Typical me. We thought that after such a "traumatic" start to life that this would be it for my health complications, wrong.  Have you ever thought what it would be like to wake up sic...

30 Day Chronic Illness Challenge 6/6 Day 26 What impact has this had on your friends, family, partner parents etc? It's just as hard for me as it is for them. They see me at my worst. It can be rather frightening to think about how unpredictable my future is and if I'll still be there to enjoy their milestones. It's hard for everyone I have the disease but they have me there for we come as a package deal buy me get NMO free.  Day 27 What's the most helpful advice you have had?  You can do anything you just have to do it differently  - my VI support 1-2-1 Listen to your body- my VI 1-2-1 Day 28  Name 5 things you have achieved despite your illness.  Looking like a normal, happy, healthy person  Getting good grades at school  Making friends STRENGTH BRAVERY  DAY 29 What has helped you cope with the stress of this life? Knowing I am not alone in this.  I've turned it into a rather positive exper...

Laying around in bed and waiting for doctors appointments gives you a lot of time. For many young people with chronic illnesses this time is spent wondering about their future and trying to plan life around their health. People take being educated for granted but like a lot of other things once you loose that ability you realise how much you really wish you could do it. Finding ways to make it work while balancing all of your other priorities is a really daunting  thought for the person, staff and family.   I have asked my followers on Instagram @youngpeople_chronicillnesses for their advice on how to cope with education and health to enjoy a better quality of life.  @Niamh.S.Wedlake People are going to ask questions and you will be misunderstood, be open and honest about your health. Provide people with helpful links, booklets and your own knowledge. If you use any helping aids and people look at you weirdly just smile, it's curiosity.  Don't be afraid to ask...

30 Day Chronic Illness Challenge 4/6 Day 16 What's your favorite inspirational quote ? You are tougher  than life is! Be a voice not an echo. Day 17 How would things be different if you weren't ill? I can't even imagine that. I would not be who I am today nowhere near. Which is quite weird to be honest. I love who I'm becoming. Forever changing.  Day 18 Do you think you have become a better person through being ill? Explain. I really do I believe that this illness has  shaped who I am. I would not have empathy or any understanding of chronic illness without this. I've learnt to make sure people don't feel alone in their fight which I couldn't do without going through this. This is me and this is my life I wouldn't change anything.  Day 19 How do you feel about the future? Uneasy. I tend to take each hour as it comes.  I do try to plan things because I know there's a way to do everything you just have to do t...

30 Day Chronic Illness Challenge Made By CFS_Zombie Day 11 Why do you believe you have this illness? Bad luck or higher power or something else? Bad luck. There must've been some unbalanced chemicals that created the antibody. Things just happen.  Day 12 Briefly explain to a healthy person  what it is like to live with this illness ? Life with any illness is difficult but for me the hardest part is the chronic pain and fatigue. I miss out on a lot of things because of my body being silly. The chronic illness not only has a physical effect but all of the complications and worries bring psychological issues.  Day 13 Has your physical illness had any effect on your mental health? Explain . My physical illness has had drastic effects on my mental health. Weight gain from the steroids was one really hard battle I fought. I now love my body because I believe it looks healthy.  I get really upset when I get new symptoms because I hate having...

Having your independence taken away is truly one of the worst parts of having a chronic illness for me. Even though I'm registered blind I use to go out with friends have fun, cope without using my cane because I had learnt all the routes by landmarks, sounds and the floor texture. I would be fine you couldn't even tell I was blind unless there's were steps of course.  Even when I was on crutches all those times that my legs were fatigued from NMO I still manages to travel around with my friends and family. Last year that all changed when my body was not physically capable of being pushed further to its limits. We rented a wheelchair while on holiday and I realised how much easier it was. Although I hated being visibly sick and the stares of curiosity I would receive it was easier.  When we arrived once I had finally admitted that I needed HELP! We got in touch with physiotherapy who then ordered me a chair. A year later and I'm still in the chair unless I'm walki...