My life with Neuromyelitis Optica Q and A
My life with Neuromyelitis Optica Q&A
Find out more about how I live my life and what helps me cope.
How do people react to my story?
Some people get very curious and try to figure it all out in their head. I get a lot of sympathy, which can be annoying. I understand people are sad when they hear what I've been through and that's why they give me sympathy. There are also people who will treat me as if I’m a young child because they assume I need help when I’m quite independent, and they’ve seen that side of me which can be frustrating.
What things do I struggle with on a daily basis?
I struggle with things everyone takes for granted like sitting up, walking up the stairs, reaching for something or even choosing which colour top I’d like to wear that day. I find the fact that I’m colour blind funny because I’ll say, “Is that pink?” and it’s usually something blue or even beige! Another problem I face is deciding when to stop and rest. I can say, “Oh yes I’ll come shopping,” at 9 am, and by 12pm I’ve changed my mind because it’s just not a good day.
How does NMO effect my mental health?
I feel frustrated and drained most of the time. I get frustrated because my health is deteriorating, or going well and then suddenly I’m really ill again. It’s draining because I feel obliged to try to do something each day, when on some days it’s just too much. I get annoyed with myself for letting people down even though I know they’ll understand. I suffer with anxiety because I have constant worries about my health and getting sick on unfamiliar situations. I see a psychologist and a school counsellor who have really helped me work on understanding why I feel certain things.
What things does my illness prevent me from doing?
I like to think it doesn’t prevent me from doing anything. I love to do things people tell me I can not do just to prove that I’m determined... It doesn’t always end well. For example walking up 4 flights of stairs to do an assessment I wanted to do
in school... I got to the top and was too tired to reach my full potential.
What helps me cope besides my medication?
Being around people who aren’t worrying or asking about my illness. I’m at my happiest when I’m with my best friend because she’s accepted everything about me from day one. I also findnd art really relaxing. I love to do my art in bright colours that I can see, and play about with the shades. I really find the online chronic illness community very helpful too. They may not have my illness but we all have aspects of each other's illnesse. I've developed a very close group of friends who help me get through each and every day.
How do I think my peers at school treat me?
School can be challenging because I’m not one of the ‘populars’ so nobody takes the time to get to know me and know more about my illness. I have some great friends who’ve known me since I rst got ill and to them I’m just Niamh because they’ve grown up with me. I’ve had a lot of hard situations but I always remember that I’ve had to grow up a lot quicker so my peers aren’t being immature they’re simply acting their age. I will be moving school in September 2016 to a modern more accessible school where I will be able to use my wheelchair and get a fresh start to begin my GCSEs.
How much pain do i feel?
I get pain everywhere because of the damage in my spinal cord. I take a lot of pain killers to try and help but it only makes me tolerate it, it never goes away... I have joint pain, muscular pain, neuropathic pain and bone pain. It makes it almost impossible to sleep. I suffer very bad period cramps so have got a Mirena IUD to try and help calm my periods. The less pain the better for everything. Sometimes I can be hurting so much I makes me throw up... It's joy nice.
What would I say to other people with NMO?
I would tell others fighting this illness to continue fighting. Staying inside and blocking everyone out isn’t making your life any better. You have to just accept it and remember that what they have now they may not have in a year’s time, so embrace it. Embrace the fact one eye still works a little or that you can move your arms and talk.
What would I say to anyone reading this who isn’t suffering with NMO?
Don’t assume everyone’s story is the same. Ask questions, do your research and take your time to understand before making any judgments. You may think people don’t want to talk about their illness but at some point they have to. You need to begin that path for them.
What would I say to a family member of someone fighting NMO?
Some days we may look like a normal healthy human and others we may look zombified and be irritable. Just sit down and take each moment as it comes. It will be hit as hard for you as it is for them don't be afraid to ask for help.
Do I think I have been treated well by my health services?
I think the help I’ve received has been amazing. I do think that as I’m a child I’ve been prioritised more, which is silly. They think about the future of a child more than a adult that’s how I feel. I’ve been given the best doctors you can get for FREE. There are so many people in other countries who cannot afford treatment so I appreciate the help I’m given.
Do you have anyone who inspires you?
I have many people who inspire me. It's mostly my online friends who are chronically ill. They make me want to be a better person. Because of them I appreciate what my body still does independently like breathe and let my heart beat normally. I do have some YouTubers like Molly Burk and Yesterday's wishes who truly inspire me. Both girls are visually impaired but still do YouTube videos and spread awareness across the world just like I want to do!
Find out more about how I live my life and what helps me cope.
How do people react to my story?
Some people get very curious and try to figure it all out in their head. I get a lot of sympathy, which can be annoying. I understand people are sad when they hear what I've been through and that's why they give me sympathy. There are also people who will treat me as if I’m a young child because they assume I need help when I’m quite independent, and they’ve seen that side of me which can be frustrating.
What things do I struggle with on a daily basis?
I struggle with things everyone takes for granted like sitting up, walking up the stairs, reaching for something or even choosing which colour top I’d like to wear that day. I find the fact that I’m colour blind funny because I’ll say, “Is that pink?” and it’s usually something blue or even beige! Another problem I face is deciding when to stop and rest. I can say, “Oh yes I’ll come shopping,” at 9 am, and by 12pm I’ve changed my mind because it’s just not a good day.
How does NMO effect my mental health?
I feel frustrated and drained most of the time. I get frustrated because my health is deteriorating, or going well and then suddenly I’m really ill again. It’s draining because I feel obliged to try to do something each day, when on some days it’s just too much. I get annoyed with myself for letting people down even though I know they’ll understand. I suffer with anxiety because I have constant worries about my health and getting sick on unfamiliar situations. I see a psychologist and a school counsellor who have really helped me work on understanding why I feel certain things.
What things does my illness prevent me from doing?
I like to think it doesn’t prevent me from doing anything. I love to do things people tell me I can not do just to prove that I’m determined... It doesn’t always end well. For example walking up 4 flights of stairs to do an assessment I wanted to do
in school... I got to the top and was too tired to reach my full potential.
What helps me cope besides my medication?
Being around people who aren’t worrying or asking about my illness. I’m at my happiest when I’m with my best friend because she’s accepted everything about me from day one. I also findnd art really relaxing. I love to do my art in bright colours that I can see, and play about with the shades. I really find the online chronic illness community very helpful too. They may not have my illness but we all have aspects of each other's illnesse. I've developed a very close group of friends who help me get through each and every day.
How do I think my peers at school treat me?
School can be challenging because I’m not one of the ‘populars’ so nobody takes the time to get to know me and know more about my illness. I have some great friends who’ve known me since I rst got ill and to them I’m just Niamh because they’ve grown up with me. I’ve had a lot of hard situations but I always remember that I’ve had to grow up a lot quicker so my peers aren’t being immature they’re simply acting their age. I will be moving school in September 2016 to a modern more accessible school where I will be able to use my wheelchair and get a fresh start to begin my GCSEs.
How much pain do i feel?
I get pain everywhere because of the damage in my spinal cord. I take a lot of pain killers to try and help but it only makes me tolerate it, it never goes away... I have joint pain, muscular pain, neuropathic pain and bone pain. It makes it almost impossible to sleep. I suffer very bad period cramps so have got a Mirena IUD to try and help calm my periods. The less pain the better for everything. Sometimes I can be hurting so much I makes me throw up... It's joy nice.
What would I say to other people with NMO?
I would tell others fighting this illness to continue fighting. Staying inside and blocking everyone out isn’t making your life any better. You have to just accept it and remember that what they have now they may not have in a year’s time, so embrace it. Embrace the fact one eye still works a little or that you can move your arms and talk.
What would I say to anyone reading this who isn’t suffering with NMO?
Don’t assume everyone’s story is the same. Ask questions, do your research and take your time to understand before making any judgments. You may think people don’t want to talk about their illness but at some point they have to. You need to begin that path for them.
What would I say to a family member of someone fighting NMO?
Some days we may look like a normal healthy human and others we may look zombified and be irritable. Just sit down and take each moment as it comes. It will be hit as hard for you as it is for them don't be afraid to ask for help.
Do I think I have been treated well by my health services?
I think the help I’ve received has been amazing. I do think that as I’m a child I’ve been prioritised more, which is silly. They think about the future of a child more than a adult that’s how I feel. I’ve been given the best doctors you can get for FREE. There are so many people in other countries who cannot afford treatment so I appreciate the help I’m given.
Do you have anyone who inspires you?
I have many people who inspire me. It's mostly my online friends who are chronically ill. They make me want to be a better person. Because of them I appreciate what my body still does independently like breathe and let my heart beat normally. I do have some YouTubers like Molly Burk and Yesterday's wishes who truly inspire me. Both girls are visually impaired but still do YouTube videos and spread awareness across the world just like I want to do!
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