Nystagmus is a medical condition that many people haven’t heard of before. Nystagmus is an eye condition where the eyes move in a vertical, horizontal and sometimes circular pattern. There is no cure and it can impact someone’s life in many different ways. I was born with Nystagmus. I am not alone. I have met many people who have Nystagmus.
Over the past year I have learned one very important lesson. Nystagmus can be challenging, but I can live a full life despite having it.
Some of the challenges I have had are bullying. I can not drive. But I have learned there are other modes of public transportation that I can use to be successful. I use accessible technology to access the computer, printed materials, etc.
Nystagmus has made me more positive. It has given me the motivation to do well with my education. I received my regular rather than my special education diploma. I received it with honors too. In college I earned my degree in journalism. I feel passionate about helping parents, children and the general public better understand Nystagmus. That is why I decided to start my own business to help others learn about Nystagmus and how to live a full life despite this. I post information related to Nystagmus on my blog, Facebook page, and YouTube channel.
The public can also support the Nystagmus Network. This charity helps people with Nystagmus. They are also working with different networks to better improve the quality of life and we hope one day a cure.
I can clearly remember the pain that I felt before going into therapy. These symptoms were both physical and emotional. The physical signs I had were a rash on my belly, arm and behind my ear. I had tried all different kinds of over the counter creams and lotions. Some of the creams only helped a little bit. It never went away. I kept scratching which made the rash worse. I was under a lot of stress because my dog, Noodles, died in March. On top of that, I was in a temporary job that I did not care for because their was a lack of public transportation and accommodations.
I had wide spread body pain. I hurt all over my body. The only thing that helped some was a hot bath, which also made my rash hurt.
When it came to the emotional pain, I had waves of sadness and hopelessness. I had very little motivation, and I was crying a lot. Since I was having so many problems my family and friends encouraged me to see a doctor and to get a referral to see a therapist.
It took me a year to get the courage to make a doctor appointment. The reason I did not want to go was a fear of getting a bill that I could not afford. While I sat in the waiting room, I was shaking. I feared that my rash was uncurable. However, my biggest fear was the stigma that went along with getting help for mental health.
When I actually got into the exam room my anxiety went even higher. I felt like I was either going to throw up or start crying. When the nurse came in I started spilling out all of my problems from the pain from my rash to the pain I was having from the heartbreaking past I was feeling. The nurse was caring. She sat down and listened to me. She let me get all of my nervousness out of my system before she even did the exam.
She asked me some questions about my health and gave me a simple exam. Before I left her office, she gave me a prescription for my rash and a referral for counseling. She gave me some strategies to help me cope and to start feeling better on my own until my first appointment.
When I left the office, I felt good that I had reached out for help. I just had to wait a few days before I would be getting a phone call for my first appointment.
Author’s note: I am not a medical professional. I am just sharing my own personal experiences. If you are concerned about your physical or mental health please seek proper medical care.
I was very excited to bring back, by popular demand, another Amanda Gene tries video. I decided to try some more chocolate and crisps (potato chips) from the United Kingdom.
The first thing I ordered for this video was a pack of four Flake candy bars. I got them from Amazon for $4.58 with free shipping. I have tasted other candy by Cadbury before so my expectations were high. The taste of the chocolate was smooth and very sweet. I enjoyed it. The texture of the bar does live up to its name Flake. I highly recommend this candy bar to anyone looking to try something new. I will order more if I have the chance.
The next thing I ordered was a variety package of Walkers Classic Crisps. I ordered them from Amazon for $4.95 with free shipping. The flavors I bought were Ready Salted, Salt & Vinegar, and Cheese & Onion. The first flavor I tried was the ready salted. This flavor reminded me of the plain lays potato chips we have here in America. To me there was nothing special about them, however I did enjoy them. The next flavor I tried was salt & Vinegar. I think they were good; however, I would not want a steady diet of them because of the strong lingering taste of vinegar I had in my mouth once I finished them. The last flavor I tried was cheese & onion. This was my favorite flavor. For me this is a flavor that I cannot find here in the States. The cheese flavor really made an impact on the onion. I would definitely order the cheese & onion flavor again.
I enjoyed tasting these chips and chocolate from the United Kingdom. Let me know what other treats and from what country I should try next by leaving a comment down below.
Author’s note: The links provided in this blog post are nonaffiliated with me in any way. I provided them in case you want to order your own treats. 😊
May has certainly flown by. It has been a fast paced but fun month.
When it comes to movement, I certainly have been making some strides. I have slowly started getting my weight in the right direction and I am happy to report that I only need to lose three more pounds. I know with hard work and dedication I can lose the weight I need.
I have also completed my Hadley School for The Blind and Visually Impaired course “Going Places.” I even did a YouTube Series on the subject. Be sure to check my series out!
I have been published and paid for one of my works! You can read my article here.
This month my grandpa had his birthday. A good friend of ours organized a birthday party for him. I enjoyed helping my friend prep for the party by going grocery shopping and cooking some of the food. My grandpa enjoyed his birthday party. He enjoyed the lunch we served and chatting with our friends. All of our friends had a fun time at the party. The food was delicious.
When it comes to patience, I have learned that hard work does paid off. I am currently working on a special project for parents whose children have Nystagmus. I am excited to work through this project; I want it to be the best project it can be. Therefore, it is going to take time.
I have learned to be patient with myself when it comes to editing my videos because I am having some problems with the software. I believe that I have found a solution to the problem which is so easy. I enjoy making YouTube videos. Be sure to subscribe to my channel.
Lastly, I learned that being positive and having positivity makes all the difference in the world. I have been meeting my goals when it comes to my Facebook, YouTube and Blog subscriber count.
Remember to set your goals and achieve them. ! I believe in each and every one of you. 😊
Hi Everyone, this month I got the pleasure of interviewing my friend Hannah. Hannah is very active on Twitter. Please be sure to give her a follow as she tweets out interesting content. Many thanks to Hannah for being a guest. 🙂
What is your name?
2. Age? 28
3. Who has inspired you the most in life and your blogging?
In my life, there are so many inspirational people, but above all I’d have to say my granddad. He was born with extreme curvature of the spine, but never let it limit him. Even though it stopped him being eligible to fight in the war, he served in the home army. He also played cricket. Gosh, he loved that game. By the time I sprouted into his life, his eyesight was bad, he was nearly deaf, he needed oxygen at night because his health wasn’t great. Yet he never missed a moment playing with my brother and me.
He’d be the first chasing us around the ball pit, or taking us down slides, and he learned to swim at the age of 83 so he could take us to the baths.
His spirit was indomitable, and his curiosity, his insatiable desire to understand everything, inspired me as much as his love for life. We’d watch the Christmas lectures every year together, and he’d read to me all about dinosaurs and paleontology as a child, saving his National Geographic magazines to read to us as bed time stories.
He was quietly strong, he never complained, and he inspired me in so many ways to be a better person in the hopes I’d make him proud.
And when I was hospitalized, it was the memory of how well he handled adversity and physical weaknesses which gave me the strength to still smile.
Best man I ever knew.
4. Besides writing, what do you like to do in your spare time?
I love taking really long walks, and I’ve taken up indoor climbing with a friend. I’ve also become addicted to the gym because the cross trainer allows me to run, and I’d forgotten how wonderful that felt.
As well as that I love cooking. My Iranian family are currently teaching me some of the more tricky traditional dishes, although I’ll be honest, I could live on Tah diq forever, and we branched out to try a tagine the other week. It was lush.
I also do kids work, and while I’ve been too ill to do that for a while, now I’ve had my operation I’m hoping to return and pick up where I left off.
When I can, I also love to do any kind of water sports.
5. Name a bad habit that you have?
I love this question and I’m trying to think of a more interesting answer, but honestly my bad habit is probably just keeping chocolate under my bed and eating it before I go to sleep. I keep telling myself I’ll quit, but then more chocolate just appears 🤷
6. Name your best quality?
Interesting question here. I guess the quality I like most about myself (because it means life is never dull) is how I’m always daydreaming and imagining new things. I’m perfectly happy in my imagined worlds, and this means I’m never bored.
Which is fantastic for me, as it’s like having a cinema system on-tap in my head.
7. If you could interview anyone living or dead who would it be and why?
I’m a sucker for ancient Egypt, so the person I’d probably want to interview (as they just always capture my imagination, and lived through such a fascinating time in Egypt) is Nefertiti’s daughter, Ankhesenpaaten/ Ankhesenamun.
Her parents changed the face of Egypt, rearranged the religion to a monotheistic worship of the sun god, and then they died and everything they did was erased, but Ankhesenamun had to change her whole life to adapt to the traditional Egyptian worldview.
To be able to interview her on her honest opinions, her actual thoughts on her parents and on religion… well, that would be just fascinating.
7. What is your college major/Minor?
My Undergraduate degree was Japanese studies
8. What school (college or university) did you go to?
I went to the University of Sheffield
9. Where do you see yourself in five years?
In five years I see myself with a book published, working on more to sell, (this is my hope, at least!) in a home I’m not renting, with a pet dog and a cat and a degu.
I also see myself fostering children and fostering other animals. Lots of animals.
10. What is the name/cause of your visual impairment (or other disability that you may have)?
I had spinal surgery, which caused temporary paraplegia. My condition is steadily improving with physio, but so far I’ve been unable to walk unaided for over three years.
11. How does your visual impairment (or other disability that you may have) effect you on a daily basis?
Since I cannot walk unaided, I require a walking stick at all times.
From using crutches/a stick for so long, and putting a lot of weight through them, I’ve also developed tendonitis in both my arms.
I’ve had to have the house I live in fitted with grab rails.
And I’ve had to take time out of work and pay for weekly physio, and take time out of work for hospital appointments and tests.
Honestly, I’m used to this now, but when I was first discharged from hospital and my condition was far more severe, the daily effects of my condition weighed a lot more heavily on me.
My condition meant I wasn’t fit for work; I had to have carers in every day to help me with basic thing; for trips out of the house I had to have the wheelchair with me, which limited who I could hang out with as not everyone had a car, and even out of those that did, not many had cars big enough for my wheelchair; I was basically limited in ways I had never been before and it was very difficult.
Things have greatly improved since then, I’m pretty much able to do most things. I’m no longer socially isolated, and can hold down a job. Sometimes, until someone reminds me, I can even forget about the walking stick that is my extra limb.
12. What do other people feel about your visual impairment (or other disability that you may have)?
I’ve had various comments. My ex-boyfriend’s friends made some rather horrible comments, and a few people have given me funny looks, although those are the only two negative things. I’ve been extremely lucky. Some people barely even register it now. Some of the youth I volunteer with decorate my stick, and grab it when I’m not using it. They enjoy sitting there and clicking the little notch markers. My cousin’s cat has adopted my walking stick as her family and lies across it whenever I place it down, like a dragon guarding her hoard. The kids I look after love to play with it, one pretends he’s gandalf, another pretends it’s a sword.
My friend’s often ask for progress on how I’m doing with mobility, and are so supportive.
One of my youth pokes the muscles in my legs to see how they’re coming on and it has become our inside joke that she’s my unofficial physiotherapist.
Sometimes it upsets my family that I’m not walking yet. They know how I love being active (I used to adore karate, running, assault courses, mud runs etc) and they want that for me again.
So while I’ve had some bad comments from certain people, I’ve mostly been surrounded by support, curiosity, understanding, and love.
Sometimes, when I’m climbing and I balance my crutch against the wall as I grab onto the hand holds, I get curious questions, and lots of surprise and praise at the thought I’d be able to climb at all (I can only do the easy routes with very generous hand holds) which is kind of them to say, but it feels strange to elicit awe for doing something so basic (routes that require no skill)
I can see that I using a stick points to a physical limitation in such a loud way, so i understand the comments, it’s just sometimes I forget how others see me. And sometimes forgetting is nice.
13. If you had to give one piece of advice to others about having a visual impairment (or other disability that you may have) what would it be?
I’m coming from a position of my condition improving over time, so I’m not sure how helpful my insight can be as this isn’t the case for many, but I’d say the one piece of advice is give as it helped me so much is to find things you can do, and see yourself improving with, whether that’s a hobby/skill you already had, or something new you’ve never tried, and pour your energy and frustrations into that. Because there will be frustrations, and when things aren’t improving physically you’ll want something you can do which you feel a sense of achievement with.
For me that was writing. I had been saving up money to travel before I was hospitalised, and saw that I wouldn’t be able to do that in a hurry, so used the money I’d squirreled away to get a Chromebook and I started to write.
Now, three years on, I have something to show for this journey, and through my writing I’ve found a way to thrive, even when life was dark and felt hopeless.
Perhaps for you it could be art, knitting, learning a language, or trying a sport, but I’d say just (if you can) find something to pour your energy into. To excel at. To thrive in.
It helped me get through many dark times, and it’s not a fix-all solution, but it could just bring some light.
Where can other people find you on Social media (Please list and provide links)
I’m on Twitter if you want to connect @Hannah19168315
If you would like to be featured on my blog feel free to email me at: firstname.lastname@example.org
When people think of Memorial Day they often think of picnics, fireworks and the start of summer. For me, there will be no traveling or picnics. Maybe one of my neighbors will shoot off some fireworks that I will try to watch. I will either spend the day in two ways working or maybe spending the day relaxing. If I have to work I will. I am working to start my own business. With that comes working on all of my projects. From blogs to my top-secret project I have a lot I can work on. I know I will get their one day. When it comes to relaxing, I will probably listen to some music and read a book for my book club.
For those of you who do not know, my father was in the Military. My father retired from the Air Force. I personally want to thank all of those who have died and fought for our country and our freedom. Being able to write my own blogs and life an independent live is a great gift.
Mental health is important to me. I have learned through volunteering for SANE: Changing Mental Health for Good that Mental Health Awareness week is celebrated May 13 through May 19th. I feel passionate about mental health, and I decided to start a series on my blog and YouTube channel dedicated to mental health. I want to share some of my mental health journey with you. I hope that opening up about my health will get more people talking about their own mental health and about the resources that are available to help in healing and to sustain wellness. I have had a range of mental health issues such as low-grade depression, anxiety, panic attacks, stress, and Body Dysmorphic Disorder.
I learned through therapy that my self-esteem and wellbeing could improve through the use of different coping techniques and positive self-talk. It took a lot of hard work and time, however I am now a happier and much healthier person because of it.
I hope that you enjoy this series. I feel ready to be open on each topic I discuss. Together we can talk about these topics down in the comments and I hope that this helps others in their own journey.
I am no longer afraid or ashamed to talk about my mental health journey. I find it very beneficial and healing. Here’s to a new series and to Mental Health Awareness Week!