Please note that every person may feel differently about this and their is no right or wrong way. These are just things that helped me personally. I am not a medical professional and cannot give medical advice!
Getting a new diagnosis can come with many mixed feelings and questions. It can make you feel relieved or nervous about your future. Also when your finally told you might not feel like you imagined you would feel like when getting the news. And this is totally normal and ok!
Don’t feel you need to rush back to “normal life”give yourself time to process this important news. You might need time to let you make adjustments like getting home aid equipment to help you round your home when doing tasks such as cooking.
I decided I wanted to write this so that I could share with you some tips and to tell you about the things that helped me when I was newly diagnosed.
This first step is very important to find a professional you trust and feel supported by. If you have already found a medical professional you feel you can trust this is great! Maybe the person who first diagnosed you is the right person. Or maybe you see a variety of several health care providers over the last few months or so and your trying to find out the next steps.
Sometimes when we are on the journey of being diagnosed with a condition we may see many different doctors and health care professionals. Getting referred to different doctors and having tests done. This can become very overwhelming, confusing and tiring tiring. Sometimes we can get diffrent opinions from all the medical professionals you see it can be really hard and frustrating to know who’s advice to follow and leave you feeling unsure and anxious.
My advice is :
- Find one doctor you really feel you can trust and feel supported by. Listen to your gut. This could be a doctor you’ve seen for years or a doctor who diagnosed as an example.
- When trying different therapies that could help you with your journeyto understand and know how to adapt to your “new normal” iris important thatthis person makes you feel comfortable so that you can ask any questions or raise any concerns you may have. As well as this it’s very important that they have an overall understanding and over view of your case.
When newly diagnosed with a conditions things may start to feel very overwhelming unlike before. You may start to feel that you are alone and no one understands you. Especially if your condition is rare. You may start to see a change in behaviour with becoming more isolated with the outside world. But know you are not alone.
Finding people who understand what your going through can be a huge help.
Not only can others offer you emotional support and help you feel less isolated they may be able to give you practical advice like coping skills. Of course when it comes to medical advice ,your doctor should be offering you advice.
Getting emotional support can be massively valuable. Dealing with a diagnosis and condition can be really diffcult and sometimes by talking to others who have the same or similar condition to you can feel like a weights been lifted as you are talking to others who know what’s it like to live with the condition first hand.
There are so many Facebook Groups out there, some are for specific ones for diffrent medical conditions. You may find some that are local to you but don’t worry if you can’t their are others that are open to everyone and you can live anywhere. If they are well-moderated as a member of the group you will hopefully find the group a safe place where you can interact, ask questions and support each other.
However please beware that sometimes these groups can be a little too much and overwhelming. You can put the group settings on “mute” so that you don’t constantly see it but you’re still stay part of the group. Remember you can also leave a group completely. Looking after your health and well-being comes first even when your on screen.
Instagram is also a really good platform to use when finding support. Their are so many pages/ group communities for chronic illnesses, disabilities both in general and condition specific. I follow some on my Instagram so be sure to check my Instagram @defeatingdisability to help you get started with funding pages and communities which offer support.
I’n the beginning everything will feel a bit confusing and overwhelming especially when you are working with your medical professional to find the best medication or treatments. When going to medical appointments it is very likely your doctor will want to know how you are reacting to treatments. This may look like an easy question to answer but it isn’t really. You may have a condition that is not easy to keep on track with remembering changing information as it fluctuatios.
This is where a journal may help it helps you to not only remember important information but also allows you to store this information in one place which helps you to access all the information you need quickly. You don’t have to do it perfectly know one is going to judge its simply a space which helps you to store relevant and important information with no judgment.
Keeping track of medication, symptoms and activities may help not only helpyou but your health care professional look for any patterns that maybe recordingand being able to manage and have a plan in place if other symptoms indicateother health issues you may have. By doing journaling can help youfigure out certain patterns that you may otherwise not be able to see. For example “ if I don’t have a glass of water or tea beforedoing my day jobs I find it harder to stay calm.Or when I feel scared and anxious a get a “blood metal”taste in my mouth.
My doctors gave my mum the task of writing down my sezuires. My mum wrote down the following: the date, the time, what I was doing before the sezuire, big, medium,small, any warning before and any other comments .Medical Professionals wanted us to do this to see if they could see a pattern and maybe be able to see what was causing my seizures. At college they now keep a record of my seizures which they get from my 1:1 support worker as she writes my seizures down.
On reflection journaling this information also helped me to understand my new condition more which is now really helpful because with support now I can still try and do every day things like my peers but my support worker and parents also make sure I’m safe. Alternatively if you find writing in a journal is not your thing their are apps you can use tostore this information which is brilliant when your on the go as you just get your phone out and store the relevant information quickly.
Now it’s time to think about what would help you?. Everybody is diffrent. While some things are helpful to one person this doesn’t mean it helpful to everyone. When it comes to health everyone’s journey is different and that is ok. Each one of us is individual and so is our health. You could use your journal to keep a record of things you felt were helpful. From this you could create an “action plan” with your professional and support team around you.
You have just been recently diagnosed so it is really important you focus on your well-being and mental health. You may now start to feel under a lot of pressure from the outside world to get better quickly. Know that it is ok to ask for help. If you struggle with this question ask yourself what would I say if someone I cared about asked me for help.
Through my own experiences I have found out who the realfriends in my life are. I found that my relationships with true friends grew to be stronger as well as showing me that not all relationships I had were as solid as I thought. Though this hurt at times I now have astrong supportive bubble that is growing as our relationships are growing stronger and stronger every day.
I’m not going to lie to you being newly diagnosed with a condition can be challenging. You may feel that your feeling up and down thousands of times in a day. With thoughts and emotions rushing constantly the fears you have. But know this it’s ok to take time out. You are loved, You are valuable, Your journey will make you stronger and help others feel less alone.
Recently I was having a chat with someone and they were surprised by how I spoke and portrayed myself as they were expecting me to be and act different because I have a disability. So I thought I’d share with you 5 things I want non-disabled people to know from myself as a disabled person.
This post is not meant to cause offence, it is simply done to share my thoughts. I know my thoughts, feelings and options do not relate to everyone in the disabled community. It’s important to remember that no one is the same regardless of if they have a disability or not.
I hope this post is informative and raises awareness of some misconceptions that can be surrounded by disability.
As a disabled person their have been times were I felt that the world was just not made for people with disabilities. Therefore I often face barriers in our everyday life that my peers don’t. This can make me feel excluded in certain aspects of society. It’s important to remember that making adjustments for disabled people is vital and can make a huge difference. These adjustments don’t always have to be “big” it can simply be needing extra time to get off a ride at the theme park.
There are many misconceptions surrounding the subject of disability. One of them being that having a disability can have a negative impact on someone’s life. Don’t get me wrong their have been times when I wished I wasn’t disabled and that I wished I was like everyone else. Maybe I wouldn’t have got extremely badly bullied. However having a disability has helped me think outside the box when problem solving. I wouldn’t have met some of the amazing people and animals I have in my life if I wasn’t disabled I can’t imagine a world without the charities Riding for the Disabled and The Theatre Shed. Also my disability has lead me to opportunities that I believe I would have if I wasn’t disabled for example starting this blog.
People sometimes tell me “ you don’t look disabled” and I know they mean it as a compliment but it doesn’t always come across like that. Sometimes it makes me have thoughts like “ what did you expect me to look like?”. My disability looks invisible so I also get people telling me that I’m “your so lucky your disability is invisible”. However having a disability that is invisible can be hard as people think your stupid and slow but that’s a blog post in its self so I’ll write about it in more depth in a future post.
We may not always share it but disabled people and their family and careers are usually fighting some sort of battle weather it’s to do with education, funding, transport or employment to name a few. We may need adaptations to help us but these don’t take away the barriers we face. Adaptations help us to carry out everyday tasks like everyone else. Funding for people to help us like support workers is also vital as this allows us to be more independent but still safe as we don’t always want to do activities with our parents supporting us 24/7. We want to grow and feel like our peers but with the extra support we may need from someone who is not related to us instead.
Just because someone is disabled that doesn’t mean that they don’t want to be happy, achieve things. having goals and ambitions. We may need to do things slightly differently , it might take a bit longer and we may need a bit more support along the way to do what we want to do. But that doesn’t mean we can’t, we will get where we want to be. If you can dream it you can achieve it!
Feeling The Feelings And The Mind Rushing
Medical appointments and anxiety have come hand in hand for me since I can remember before appointments I feel really anxious, worried and sick. I’ve had a lot of medical appointments in my life some to do with my disability and others to do with my mental health. Throw in the pandemic and having to wear a mask and then see others with face masks is something I find really scary. I’m not the best with needles either.
Growing up I noticed I would have more hospital appointments than my peers. I’d have to leave school early for appointments. I still do now even as a college student. At school I than began to realise I needed aids like a splint on my leg whereas my peers didn’t have these. I would often have to explain to other kids what it was and why I wear one.
Even know I still explain to peers what my conditions are. When I was first put on medication for my mental health it was in liquid form. However this then changed to tablet form. I found this really scary thoughts would rush around my head.
What if I can’t swallow it?
What if it gets stuck?
Will it make me sick?
Now I find taking tablets ok most of the time but I still get these questions running through my mind. I don’t think I’ll ever get used to incorporating medical appointments into my life as they still cause me stress in different ways but in a way it feels like a routine I just have to go with.
The past year however I have had my medical appointments on the phone and not in person due to the pandemic except for when I had my first vaccine for COVID. After my jab I had to lie down as the felt dizzy. Me and needles aren’t the best of friends.
As someone with anxiety I found doing appointments by phone call were actually better yes I still felt a bit anxious for the phone to ring. But I didn’t have to go through sitting in a waiting room waiting for my name to be called with about a million things going through my mind preparing myself into knowing I had to talk about things I’d rather not think about. I think it helped having appointments on the phone as I was in my safe place and I could do something straightway after my appointment like watch Netflix on the TV.
When I start to feel anxious before the appointment and in the waiting room my mum who takes me can see that I’m nervous. Sometimes I say that “ I can’t do it because my stomach is all in knots and I want it to be over before I even have to go”. This is when my mum will help me to do deep breathing and we do it together, I find doing it with someone else is very helpful as I feel not alone and that I’m not stupid for feeling this way and that’s completely normal and valid to feel how I feel.
One of the things I have to do now every week is a COVID test at college. I find these very worrying and scary to do and this can trigger my seizures. I think part of why I find it worrying is that you can’t read another persons face very well as the mask is preventing you from seeing things like a smile. The pandemic has made me realise how much as humans we gather information from each other just through facial expressions. I didn’t realise that a smile one small movement on your face could mean so much. That simple gesture conveys kindness and reassurance and a touch of empathy to another person. When seeing a needle is coming towards me and and I’m preparing for the sharp scratch it can be odd not to see a smile from the nurse or doctor who’s doing it not give that smile of reassurance that everything will be ok.
Doing Something Nice Afterwards
Before lockdown after appointments something my mum and I would do is to try and calm down my anxiety levels. By doing something completely different like going around looking at what yummy things we could buy in the supermarkets in the streets. It gave me a chance to clear my head and to breathe. Sometimes just taking a break feels like the right thing to do. As I feel if we just drove back home I may not want to have some chill time and end up doing more coursework or whatever I need to do.
Due to lockdown this way of helping myself calm down is not possible however we do different things for example before a phone call appointment we will organise something I want to do after the call for example taking my dog Mango on a walk or sitting down to watch a TV program. It’s all about doing the self care you can do at home from baking to having your favourite ice cream to making sure if you pamper yourself with a face mask and bubble bath.
If you feel anxious before appointments tell someone you trust, you don’t have to go through it alone!
As some of you may know it is International Day for the Elimination of Racial Discrimination . This inspired me to write this blog about diversity in the equestrian world.
When I tell people I enjoy going horse riding some are very surprised not just by the fact I ride and have a disability but also because of the colour of my skin. People sometimes tell me “ I didn’t realise people of your ethnicity took part in this sport”.
They get even more confused when they see me with my family. I am Indian but at 3 months old I was adopted by a English couple who lived in India. They then had a biological daughter so people get confused when I say “and this is my younger sister”. Over the years I’ve had people stare at me when I’m out with my family in public. Sometimes I forget that I’m a different ethnicity from my family to me it’s my normal!
The equestrian world is really lacking in diversity . I think a big aspect of why this is the cause is because of how low the awareness in this sport. People in the past have said and made comments that they thought this sport is not a sport for some like me which really isn’t the case.
We need more role models in the sport. We need someone who is relatable to people. If people see someone from the same background or similar they feel they can relate to that person. To help show how this sport isn’t just for one type of person we need to change perceptions.
I believe Riding for the Disabled challenges perceptions constantly because when I talk to people about the fact I ride with the RDA many people haven’t actually heard of this amazing charity. So I love telling them how special, valuable and life changing it is!
When people see someone like me. They can see that I can ride. I want to help encourage others to give this sport a try despite society’s labels and their are others like me taking part in the sport. This helps to break down the barriers this sport has.
One person breaking down these barriers now is Reece McCook, founder of online campaign Ride Out Racism.
Everyone should feel that it is possible for them to join and achieve great things in this sport. We need to inspire each other to join and participate in this sport and in our community. You never know who could be the top riders of our future let’s break down these barriers together, this sport is for everyone!
So with all this lockdown stuff my mood has been a bit of a up and down rollercoaster ride. Over the years, I’ve developed my “mental health toolkit.” When I notice things are going down hill here are some things that give me great comfort.
I enjoy going for walks with my dog Mango especially in the nice weather. With lockdown I have found that I’m on the screen for a much long time. However if I was at college I would be doing dance classes and moving around a lot more. I find taking Mango on walks helps me not only get exercise and fresh air but helps with clearing my head and staying grounded. Lockdown has really made me realise how doing exercise really does help me to lift my mood back up when I’m feeling low. Going on walks helps me cope with my anxiety I find if I’m not doing much exercise my worries can build up more causing me to worry and not wanting to do much.
Just Watching The Telly
When I’m feeling low I can find comfort in watching something. As much as I love watching new shows theirs nothing better than rewatching shows that you love. When I feel low I find my concentration levels are a bit all over the place and I can’t focus. When this happens I find it hard to read a book. Which is why watching a TV show I’ve watched before is so good. It’s like I can finally rest and let go giving my head time to breathe. Like self care and love for my head. Some of the TV shows I love watching repeatedly are:
- Once Upon A Time
- Downtown Abbey
- Fresh Meat
When my head feels all over the place one thing I like to do is write down and make a list of things I need to or want to do and achieve in the day. Writing it down helps me visual see what my head is trying to tell me at one hundred miles an hour.
When I’m feeling low self care is very important sometimes you don’t feel like doing lots of things. Here are some quick, simple and kind things you could do on a down day that don’t take very long.
- Put some of your favourite lipstick or lipgloss on
- Make yourself a nice hot drink for example a cup of tea or hot chocolate
- But some of your favourite body butter/ lotion on
- Put on some nice jewellery for example a pair of small shiny earrings .
When people say look forward it isn’t always about making your career plan for the next 5 years it can also be about daily, weekly things to look forward to. I try not to be hard on myself and but pressure on anything as things can change last minute! However having something positive to look forward to can really help me to try and stay in a more positive headspace. For example setting a day up to meet up with friends on FaceTime or House Party, Doing extra activities such a drama with my drama club on zoom, to buying something nice to eat that I can look forward to eating later in the week like a cheesecake.
What do you find helps your mental health?
After months of doing studying online due to Lockdown. The thought of returning to education which isn’t on a screen may feel a little daunting. Here are some of my top tips on how to make this transitioning a little bit smoother .
A New Routine
Many students all over the country will have to start doing COVID tests in school and colleges. As someone with anxiety I know that timetable changes to my day can set me off to feel extremely anxious and I may have panic attacks. To help you overcome this you could maybe write out your time table in a more visual way using lots of different colours and pictures. Or you could have a little notebook full of little affirmations you can look at whilst your waiting to do your test. Many schools and colleges have created videos to show students what the new process will be like. If they haven’t shown you don’t be afraid to ask your teacher as they may have other resources available for you to you which you might find useful.
This next tip might seem a bit silly but when you get up ready for the day make sure you have breakfast this could be some toast, a fruit smoothie or some cereal. If your stuck on what to have I recommend looking at Pinterest they have some really yummy, healthy, breakfast ideas to help kick start your day.
Did you know:
1. Eating breakfast can help you with your memory for the day and your attention span will be a lot better compared to days we’re you don’t have breakfast
2. Eating breakfast can help you have a more positive outlook on your day.
3. People who eat breakfast regularly are less likely to become obese. Their is still a lot of research going into why this may be. One idea is that eating breakfast helps to prevent large fluctuations in your blood glucose levels, helping you control your appetite.
Things To Have In Your Bag
Recently I was talking to one of my friends about returning to education and how they felt about it. They were feeling very worried and scared because their OCD has worsened through the pandemic and they are becoming more and more scared to touch anything or go out.
To help with returning to education they suggested always make sure you have a little bottle of hand sanitiser with you. As well as this they also have stress balls and fidget spinners with them to help them to control intrusive thoughts.
Another tip I have that may seem obvious is talk to someone. You never know you could be helping them too. They might feel the same and it’s nice to feel your not alone. You could speak to a family member, friend, teacher anymore who makes you feel safe.
Be Kind To Yourself
My final tip is remember to be kind to yourself. The transitioning from working from home on our screens to being back having to get ready to the day ahead , catching the bus so your not late for school. Our whole routine is changing. Make sure you do little things just for yourself and give yourself the attention you give to others. This could be watching your favourite TV show, reading a book, having a nice bubble bath. Give yourself breaks enjoy the outside. You could sit in the garden or go on a short walk with your dog. Ground yourself be in the moment. It doesn’t matter what you’re meant to do or shouldn’t have done. Just enjoy the here and now nothing else matters.
I hope some of this helped and I wish you all the very best of luck with going back to school. Sending all positive vibes. If you need any more support I have listed a couple of websites that you may find helpful.
Youn Minds: https://youngminds.org.uk
I am so excited to announce that I am now starting a whole new series on my YouTube Channel reading stories for children. I have decided to call it Bryony Goes Bananas With Bedtime Stories
As some of you may know I grew up with books and they are still a massive part of my life now.
This series will be available on my defeatingdisability YouTube Channel from tomorrow!
I came up with the idea to create this as over the past few months I have spoken to children and parents about how they can make the reading experience better for their children as they need more help with reading due to their disabilities. Many Parents told me that their kids wanted to read stories just like their friends could but they found this really hard and found it embarrassing to tell friends their parents still have to read for them.
So this is when I came up with the idea to create Bryony Goes Bananas With Bedtime Stories. In each video I will be reading a Children’s storybook with pictures so that you can follow along to and we can read together. In each video their will also be main words that come up to help children to communicate and learn words.
I am so excited to be starting this and to be growing into new areas to help children discover the enjoy that books give.
The books I will be reading may also be good to watch and listen if you are learning English too as an example.
My first ever episode for this series on my YouTube Channel will be up before 6pm tomorrow. The first book to kick off this amazing series is one of my all time favourites, The Gruffalo by Julia Donaldson.
If you’ve got the book I’d love for you to read along with me.
You can subscribe to my YouTube Channel here to be the first to get notifications when the first book of the series is posted along with any other videos I may post: https://www.youtube.com/channel/UCjLzWg0723lk8w5TeFlNPBA
Hopefully see you tomorrow!
And please let me know if you have any book requests
2020 was the year of change for everyone around the world. From students doing lessons online to having meetings on zoom calls and probably spending more time in lounge wear than we thought we would. The pandemic flipped our daily routines upside down and everything we thought we knew out the window.
I would say I like to have a routine as much as possible as this helps me to manage my anxiety better. The unknown can cause me to feel a lot more anxious, have more seizures and me feel scared of doing daily activities compared to before the pandemic. I might have taken simple tasks for granted for example being able to walk around college to get to class.
I do like doing things that aren’t planned as such but if I can plan it I feel more prepared and relaxed.
As plans changed daily with new lockdown rules. I had to learn to adapt and come up with coping strategies this was hard at times. To be honest it still is now after all of us living with the unknown for quite a few more months.
However from having to take each day as it comes I have learned more about being present being in the here and now. I have also been learning to embrace the little things that bring joy to me everyday . For example having cuddles with my cats or watching a film on Netflix with the family. Maybe without this whole lockdown COVID stuff I wouldn’t have seen or appreciated the small things that make me smile and help me to be positive on a daily basis.
Another thing 2020 taught me was to try and stop worrying about things that needed to be done with a longer time frame. For example I would want to get my college work handed in way before the deadline so I could tick it off my to do list. I like to do lists as it helps me to organise my thoughts. Once everything was done I could then go and do things I enjoy like messaging friends. I sometimes didn’t listen to my body and would fight it as I wanted to carry on but I was tired. Through the pandemic I have tried to not rush doing work as slow and steady wins the race. This has really helped me with my own self care as I am now able to feel comfortable and not guilt for taking a couple of breaks and I have then been able to do better work as a result and I feel calmer with knowing my due dates for assignments.
Due to the pandemic a lot of my after college activities have been online and through social media I have been able to find new projects and groups to get involved with which I may have not found if I didn’t have more time to look for new activities to do as my routine wouldn’t of had the time available. So 2020 definitely taught me about embracing new activities, trying new things and learning new skills.
All through last year was definitely a year no one could have predicted . We definitely saw more kindness and appreciation for one another from family, to friends and from strangers.
Happy New Year! May 2021 be the year of light , adventure and kindness 💜.