Find Your Own Hope

How do we overcome things? How can we successfully make change in our lives?

I’m writing this piece because I’m continuously on this journey of making change and know how hard it can be. I feel like I need to it write about it to continue the fight and maybe it will help someone else too. This time of year can be stressful and overwhelming just remember we cannot always choose our circumstances BUT we can chose how we respond.

We often start by thinking about what we don’t want in life. We don’t want to be sick. We don’t want to be anxious etc.

But when you are told not to think of something and all you can do is think of that. So if you don’t want to be anxious you can’t think about how you don’t want to be anxious.

You have to learn to think about it in a different way. You have to train yourself to think about how you want to be, for example - confident.

Focus on the positive outcome not the negative - this can be really hard, and often feels almost impossible. It’s a constant battle I fight with myself but you have to be consistent.

I was wanting to link this to a quote I once heard and came across this article on conspire for change (there’s a link and more info on my blog - findyourownhope.blogspot.com)

An old Cherokee is teaching his grandson about life. “A fight is going on inside me,” he said to the boy.

“It is a terrible fight and it is between two wolves. One is evil – he is anger, envy, sorrow, regret, greed, arrogance, self-pity, guilt, resentment, inferiority, lies, false pride, superiority, and ego.” He continued, “The other is GOOD – he is joy, peace, love, hope, serenity, humility, kindness, benevolence, empathy, generosity, truth, compassion, and faith. The same fight is going on inside you – and inside every other person, too.”

The grandson thought about it for a minute and then asked his grandfather, “Which wolf will win?”

The old Cherokee simply replied, ❤️“The one you feed.”❤️

In a Psychology Matters article “The story of the two wolves: managing your thoughts, feelings and actions”, the tagline reads:

🙌“Knowing which wolf you feed is the first step towards recognizing you have control over your own self.”🙌

https://www.conspireforchange.org/?p=2522

Happy holidays. Lots of Love xx

My gofundme page - https://www.gofundme.com/7tnqm-hair-for-hope

I filmed my experience: https://www.youtube.com/watch?v=mX4qsfinWaI&t=1s

On November 20, I’m going to be donating 40cm of my hair for wigs whilst aiming to raise awareness and money for invisible illnesses. I would appreciate any support you can give. If you can’t donate money, please donate your time to reading my story.

Living with invisible chronic illnesses for most of my life has been hard and it’s something I rarely ever talk about it. But considering October is Dysautonomia Awareness Month, and my phone and computer still don’t recognise ‘Dysautonomia’ as an actual word I think it’s about time I started the conversation.

In June, CNN published an article covering several patient’s journeys with POTS titled “A doctor said it was all in her head, but it was ‘the most common condition you've never heard of’” The article explains how most doctors aren’t even familiar with the condition — this is something I am not a stranger to: as I often have to explain my condition and medication to health professionals. The condition is seriously debilitating and left me bed bound at 18 years old — “research … show[ing] that the quality of life in POTS patients is similar in what is seen in congestive heart failure, or chronic obstructive pulmonary disease”.

I especially want to raise awareness as I started experiencing symptoms when I was in pre-school yet didn’t receive a diagnosis until I was 18 and bed bound. I suffer from both Postural Orthostatic Tachychardia Syndrome (POTS a form of dysautonomia) and Myalgic Encephalomyelitis (also known as Chronic Fatigue Syndrome CFS/ME). Both conditions have no definitive ‘cure’ and limited treatment y

For as long as I can remember I always wanted long hair, but try as I might I could never grow it…then I got sick. I became so ill I spent weeks on end in bed. So naturally, I wasn't well enough to have my hair cut and overtime it grew. Coping with chronic illness is difficult and at times I would wonder ‘why is this happening to me?’ and ‘how can anything good possibly come from this?!’ Then, one day I went to a doctor and he noticed I had 'beau lines’ on my nails. These are lines that form because of severe illness and trauma resulting in the body stopping growth.

After a while I realised that my body had pretty much shut down growth, but I still had decent hair. I thought "maybe there is something I can do with this?" - so I researched donating my hair. Then began my hope. I decided to grow my hair as long as I could for the next 2 years and I’m now chopping it off in the hope it will make someone else who is struggling happy. My heart soars at the idea because when I was young I honestly dreamed of the day I would have long hair. Now the day has come and it means more to me than I could have ever imagined.

I have always made an effort to hide what I’m going through. One of the ways that I concealed how I felt, was by hiding behind my long hair. My long hair was a safety net that distracted people from signs I was struggling. I also saw it as a silver lining because it protected me from starting the conversation about illness: a conversation in which I would have to explain why I don’t work and I can’t go to university. I didn’t want to be pitied. Yes, I am sick, but I do make it through life happily. Becoming ill has been a blessing in many ways, it has taught me about the important things in life and how to find the positive in every situation.

But sometimes it takes time to find positives and hope. I was living through hell with my body but no one else could see it. Not even doctors. It was hard being told “nothing is wrong with you” - simply because my illness was invisible. All my life I was the 'sick kid’, the one who was always away. I wasn’t diagnosed for years and I only found out about my illness because my mum demanded further tests after I became bed-bound in 2016. I became so sick I couldn't walk alone in my house, I had to be fed and I couldn't shower myself. These are things that isolate you and don’t ‘usually’ happen to an 18 year old girl. It was a long process, but through this time I learnt to accept life and what it throws at me.

Please remember to be kind, as everyone is fighting their own battles. And remember to find your own hope, it will keep you going to the very end. It isn't always easy but find it, create it and cherish it - make it yours.

Thank you for reading this far, it means so much to me that you took time out of your day to do so.

If you want to read more about Dysautonomia here is the article I referenced -- https://edition.cnn.com/2018/06/26/health/pots-tori-nick-foles-dysautonomia/index.html

And if you want to watch my story and the process of getting my hair cut, check it out here: https://www.youtube.com/watch?v=mX4qsfinWaI&t=1s

And if you want to keep up to date on my posts follow my instagram @findyourownhope

Emotions are a part of life. They come and go - I guess that is the most important thing to remember. Your high of happiness won't always be (and that is a good thing - otherwise, how would we continue to appreciate it?). Just like your depressive low or an anxiety attack won't be around forever either.

I don't know why I am writing this, nor why I am writing this so soon after a panic attack. But last week I started shaking as I went to sleep. The shaking progressively got worse and so did the nausea. I haven't thrown up from an anxiety/pots attack in about a year but, after shaking for hours on end, the next morning I did. All night I kept being woken by my shaking body, thanks to my out of control nervous system. Having to sit up multiple times in the night because I thought I was going to be sick ... and then I finally was.

After I threw up my body calmed down, stopped thinking, stopped shaking and I was left feeling like an exhausted shell.

I wanted to share this I guess because I haven't had an attack like this in a good while. I haven't had that feeling of being locked inside my head and thoughts, unable to break out for months.

After the attack, I went to instagram to ask my fellow followers for help. After going through anxiety and pots attacks I still can’t really describe how horrible it feels - I have been through a lot with my health but nothing quite compares to it.

I have listed 32 of the responses I received. They are all tips from different people with different experiences on how to help and cope with anxiety attacks and what works for them.

Top Tips for Anxiety Attacks from Fellow Anxiety Sufferers

The most common responses were:

Don’t be alone while it is happening and if you are than call someone
Try some breathing techniques (some suggested included: square breathing, alternate nostril breathing)
Meditation, prayer or reciting poems and lyrics
Try grounding techniques and become aware of your senses - try tapping, feeling and focusing on things around you
Try figuring out what caused or triggered the attack.

The lovely people who stopped and took time out of their day to reply to my call for help said this (in no particular order):

1. “I use a poem or lyrics that mean something to me and recite them slowly to lower my heart rate”

@eddiehoward3

2. “Breathe, meditate, take five minutes to yourself to evaluate what set it off.”

@imaginationbycat

3. “For panic attacks something I have learnt from my therapist is to name it to tame it. So you say to yourself ‘this is anxiety I am ok or there is no danger’ take some deep belly breaths about ten. Then you need to force yourself to do something that will use the front part of your brain I do dishes or something like that. When you have a panic attack the front part of your brain the thinking part stops working. That’s why you feel like you can’t think and you want to just curl up in a ball. Keep repeating this process if you have to until it calms down. Meditation breathing work and yoga have helped a little too.”

@halee_dee86

4. “About an anxiety-attack; Focus on your breath. Put your hands on your lower back and breathe into it. Focus on the movement of your hands with every breath. Your breathing will slow down and you will start to feel better. I've been to an rehabilitation-clinic for 3 months, specialised in chronic pain/-illness/exhaustion. I've learned all these kind of tricks. Also something to 'ground' your feet. Because I was dizzy a lot and even fell a lot. But these exercises really work! Well, for me at least I hope the breathe-thing will help you too!”

@inkie_90

5. “Deep breathing, meditation or distraction”

@meemoface

6. “Focus on your breath, be aware of your environment and try to just be instead of rejecting.”

Anonymous

7. “Deep breaths have saved me many times. And grounding techniques!”

“Yoga, meditation and nature!”

@midvenna

8. “Working out what triggers them (if possible) can help”

@monasheeandme

9. “Try not to be on your own when it happens, even if it means calling someone you trust.”

@ohyeah_rachael

10. “Deep breathing!! Try any kind of breathing technique. Call someone or text someone. It can completely calm you down if its the right person. Rub your legs if you are shaking. Feel things around you; touch the grass, feel a fuzzy blanket. Use sensory things”

@happylittledandelion

11. “I like to use physical items such as a stress ball/fuzzy blanket”

Anonymous

12. “Meditate”

@palisadesparkmeditation

13. “Deep breathing, take your mind away from the problem, start doing what you enjoy like cooking, dancing, exercising. Whatever you like to get away from it.”

@photosbycris

14. “Breathing exercises.”

“Remember you have been through it before. You are safe. This will pass.”

@dansenindestorm - undec

15. “Take slow and deep breathing. Feel your sensations. Feel what you touch and describe it… describe and focus on one thing that you see… its color shape etc..close your eyes think on a good thing you really like... relax then your muscles by trying to shake it off. Muscles tense while having panic attacks.”

@gp_talks

16. “I usually hold my partner or ring him if he’s at work, his voice calms me down”

@han_evaward

17. “I find focussing on problem solving is best. I deal with my problems head on.”

“Or talking with someone as it’s happening may help. Like a big ol’ cry and blurting out your feelings”

@brittany.crabb

18. “A quick video on square breathing for anxiety: https://youtu.be/HAlTJscAuy8 “

@tksstories

19. “Pray, then count your breaths, wait for your mind to return to the present moment. Your mind will always return no matter how scary.”

@rose2wellness

20. “Prayer and meditation and medication”

@amberyesamber

21. “Taking a shower”

@joccelins

22. “Distractions!!”

“Grounding. Close your eyes and ask yourself what you smell, what you feel etc.”

“Breath in for 6 seconds until you feel yourself calming down”

@meg.weston

23. “Resume remedy, visulisation”

@mama_scrumpy

24. “I’ve found meditating helps a little”

@myfavesjournal

25. “It helps me to be with someone while it’s happening and imagine myself on the beach”

@christina.b.johnson

26. “Tapping is great and deep breathing with reassuring yourself”

@kathy.stoner

27. “Mindfulness videos on Youtube, just focusing on breathing (imagine that there are three chambers in your lungs)”

28. “Weighted blankets help a lot for me (or anything that puts gentle weight on you)”

29. “Grounding exercises (finding three things you can see, three things you can hear etc.”

Anonymous

30. “The happiness course at the art of living foundation. And Youtube meditations”

@namaste.eh

31. “Insight timer app has great panic attack meditation, I highly recommend it. Also alternate nostril breathing and EFT tapping”

@racheyg123

32. “Get a dog”

@susiegracee

I guess my tip is - always try to be present even though in the present it can feel so awful. Just focus on what is right in front of you - take life one step at a time.

Make yourself see there is no real threat. The future will come and the past has been. The only thing you can control is the NOW. It is not easy. It can be so difficult but just don't forget it. I try to remember to say “you will be safe and okay no matter what” to myself over and over in a calming tone.

Please leave a comment below if you have any recommendations that might help too! I hope this post was somewhat helpful xxx