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.
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!
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
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 💜.
So with everything that’s going on at the moment I have been feeling more anxious. My routine for the week has changed and I’ve been finding that a bit challenging at times.
Recently I spoke on the phone to my care coordinator and we were discussing how I could create a new routine that I felt I could understand and build myself some structure as things are so unknown. Which can lead to me feeling like I don’t know where I’m coming or going.
I have also been working on creating a new routine I feel happy and comfortable with the help from my support worker. My support worker often reminds me that it doesn’t matter how big or small the things you are achieving are. As well as this she regularly reminds me that it’s all about the sense of achievement I get from doing something and not what others think. I am also trying not to be too judgemental on myself and be kinder to myself as I know I can be a bit to hard on myself at times.
Let’s get started
So to get started on setting out your day visually all you need is a notebook and a pen. I love to make mine colourful so you could use felt tips or gel pens. Or you could do this on a whiteboard and use a whiteboard marker and have this placed somewhere in your room so you can see it everyday when you wake up. Your day could look like this.
How to plan the day
1. First write the date at the top of the page or whiteboard.
2. Now list out the music, TV programme and exercised our want to do for the day.
MUSIC: My happy playlist on Spotify
EXERCISE: Walking the dog
TV PPROGRAMME: Sex Education
3. Next write down 3 things your grateful for, it can be anything!
4. Next you need to write down your MUST do list. This is different from your to do list as these are tasks you must do that day. For example clean the fish tank or send your friend a Happy Birthday message.
5. Now it’s time to think about how you want to feel for the day. For example I wanted to be calm, relaxed and happy on Sunday.
6. Now let’s write down 5 people your sending positivity thoughts and energy to for the day. It can be anyone!
7,. Lastly it’s time to write your to-do list. I like write down 5 things I need to do in the order of importance. Any tasks left to do that day I will add it to my To Do List for tomorrow.
I hope this helps you or gives you some ideas. I would love to know how your adjusting with everything right now. So please comment in the below!
Right now life is very strange for everyone across the world. From our daily routines changing to coping with the uncertainty and unknown. As someone who suffers from high levels of anxiety I thought I would share with you some of the things I am doing right now to help me manage my anxiety.
Social media plays a big role in modern day society . And now more than ever you might find your using your social media platforms even more because of social distancing. As you can’t go out and socialise with your group of friends. Social media can be a great tool to use in times like these. But remember if your chat starts to turn onto talking about topics you feel uncomfortable about for example Covid- 19 tell your friends that you feel uncomfortable this is nothing to be ashamed of. In fact the conversation will problem turn into story times and they won’t even realise you’ve changed topic so don’t feel guilty saying . Remember your family and friends care about you and the last thing they won’t is to make you feel uncomfortable or anxious!
Another tip I have is make sure you are following accounts on platforms such as Instagram that you find positive, inspirational and put a big smile on your face. If you are finding any accounts you follow hard to look at remember it is ok to unfollow. The last thing anyone wants is for you to have a negative impact from their account!
It’s great that we want to know more about the current situation and what’s going on around the world. However looking at the news all day can really start us to make us feel more tense and make your anxiety a lot higher . To help keep you less anxious but still know what’s going on you could restrict yourself to just turning on the news at a certain times everyday. For example 9am and 8pm . To help you do this you could turn off your news app notifications on all of your devices.
This one might seem a bit obvious but the better night sleep I have the better I feel the next day. An alarm in the morning could really help especially when we get that temptation to have a quick lie in. This could become much greater as we don’t have to get ready for the school run or work run.
Even though we are stuck at home their are lots of exercise classes you can do online for free and best thing is all the family can do it together!Checkout this blog post of mine for ideas of classes you could do. https://defeatingdisability.com/2020/04/14/things-to-do-in-isolation-part-1-classes-workshops/
Now guidelines are saying we can now go for short walk or do other type of exercise like running for about 30 minutes. I recommend just spending so time outdoors in the fresh air. This can really help to clear your mind and make sense of all of your thoughts. As well as this the fresh air can help you feel grounded in the here and now.
Right now you maybe finding it hard to go to the shops or struggling to afford ingredients. However making sure you eat everyday is very important especially breakfast it gives you energy for the day ahead. A great place I like to look for easy, affordable and health recipes is on Pinterest. Soon I will be showing you how to make some of my favourite recipes that I have found through Pinterest.
I hope some of these ideas helped you if you are experiencing anxiety at the moment. I would love to know any tips you have too. Please pop them in the comments below!
STAY HOME & STAY SAFE💜
We all have those days when we can feel so down, that doing things for our own self care can be at it’s hardest time ever and feel impossible . This is when it is the most important time we focus on ourselves. It’s ok to put yourself first!
Sometimes when I’m having a bad day and I know I need to spend some time just focusing on me, this is when I can find it the hardest and extremely overwhelming to think of things I enjoy doing for myself. My head goes like crazy, my thoughts and emotions are rushing around me so fast I find it hard to know what to do so I just freeze.
So I thought I would share with you some of my favourite things to do when I need to put myself first. As I know when your in the thick of it, it can be very hard to come up with things you could do that just focus on you. Without you feeling guilty because you’re put yourself first!
1. I like to listen to music to help me as I find that lyrics from a song can help me not to feel alone.The lyrics can really help me to describe and express how I am feeling. This helps me to understand my emotions . I like to make playlists so that when I feel down I can quickly get to my music on the go.
2. I like to go onto Pinterest and look at my quotes board to help me feel better. I also enjoy looking for new things to add to my boards. I like using Pinterest as it is very visual and this can help me a lot when I feel down as I don’t have to read through lots of text.
3. When I feel down it can be very hard to think of all the good things that have happened. To help me through the difficult time I like to look at my photos to remind me of some of the amazing memories I have with my family and friends. To make it easier I recommend putting your photos into albums on your phone so that you can access them on the go too.
4. Journaling can be a great way to release your thoughts and emotions onto paper. This helps me to feel less scared about any worries or concerns I may have that I didn’t even know I had before I started to write.
5. Treat yourself to a warm hot drink like a nice warm mug of hot chocolate!
It’s that time again after the summer break we’re we are buying new equipment and stationery ready for our new year of school, Sixth Form, College or maybe even University. I don’t know about you but living with anxiety can be hard to cope with when new chapters are starting. So I thought I would share with you some of my tips with coping with the new academic year when you’re feeling anxious.
If you are doing higher education at college or university chances are you probably had to go and have an interview with a tutor who teaches on the course you want to do to see if you have got a place on your wanted course. When you get an offer this can be very exciting however the day before you start you might have those ever so helpful doubting thoughts wizzing around your head like crazy. To help me to deal with these unhelpful thoughts I like to write down statements of what I am looking forward to doing or learning on the course for example going on trips or having guest speakers come in. By doing this it helps me to focus on the positives, you might want to write them on your phone or write them down in a notebook that you keep beside your bed or maybe on post it notes and put them around your house.
I would also go into your school, college or university before you start to talk about your concerns for example about your anxiety. I have found that if they know before hand they can support you in making sure you are alright and feel comfortable. I also found this useful as I was told about different departments that I could go to if I felt I wanted to go somewhere more quite or to get additional support for example I could talk to a student development officer.
When you start to pack your school bag make sure you’ve got all that you need. But to help with my anxiety I also like to add to my bag things like a stress ball or maybe even an emergency paper bag that I can use if I feel a panic attack coming on. I do this because it helps me to feel more prepared if something was to happened.
On The Day
When you arrive at your school, college or university for the first day it can sometimes hit you when you reach the entrance. This can make me feel very uncomfortable and worried. I think everyone is looking at me and talking about me. To help me with this I like to pick a letter at random and then try and find as many things as I can beginning with that letter.
My last tip would be don’t put pressure on yourself to talk to everyone or to get to know other students. What I like to do because I find it hard to talk to lots of people is give myself a target of talking to one of the other students and if I talk to more that’s great . I feel that if I put too much pressure on myself then my anxiety gets worse. So go at your own pace theirs no right or wrong answer.
I hope some of these will help you too, I would love to know some of your top tips!
I had an amazing time with my Shed family performing CapeAbility for the last time on this years Shed Tour. It’s been a crazy adventure full of fun and laughter. We have performed the show at local venues, Brighton Open Air Theatre and finally at this years Edinburgh Fringe.
It feels really strange knowing now that we are not performing CapeAbility again. I really enjoyed playing my character Flint who’s superpower is all about encouraging others. I loved exploring the themes of friendship throughout the production and being able to use my own experiences throughout the production as well as being able to express my feelings.
I loved performing the songs in the production. I loved the messages we were trying to show throughout the production by using lyrics, facial expressions and sign language.
I really enjoyed making the audience feel more involved in the show compared to other shows I have done with different companies.
All in all it has been incredible and I can’t wait until our next Tour in 2021!
If you would like to find out more about this amazing inclusive theatre charity please visit https://thetheatreshed.co.uk