“Now, you’re going to have to dig deep, relive some of your most painful memories”, the psychiatrist said as she handed me a sheet of paper. She had given some ‘homework’ throughout my compulsory psychology sessions.
Her hands sat lightly in her lap, everything about her pose denoted grace (fitting, given her name – Grace). She had a calm and unaffected position as reflected by her gentle eyes as she looked at me. “This is a safe space, Camille,” she said. “Ok, I’ll do it”, I said. That was months ago, and now as I sit on my laptop to do my ‘homework’ that has now evolved into this book. I hope you can learn something along my journey. Whether it’s for yourself, or a loved one, know that you too are not alone…
Who’s talking?
Hi, my name’s Camille. I’m now 30 and last year I had a bilateral pontine stroke when I was 27 (a few months before I turned 28) and another few at 30 (last month actually). Yep, you read that right. People of all ages can get a stroke. It just happened to me at this age. I am the definition of a young stroke survivor. But that’s not the only thing ‘interesting’ about my story you’ll soon find out.
Purpose
When I was younger, I like to think that I would’ve loved to have a book like this. When you grow up with a chronic illness (a rare autoimmune disease to be a little specific) called Polyarteritis Nodosa, can make you feel very lonely, and misunderstood – and you have puberty to worry about on top of that. This is my memoir and I hope it will inspire you to live your best life now. There are a lot of stories and tips packed-in here and if you are a patient or a carer, some may say ‘learn from my lessons’ (I won’t say mistakes, as every decision I made helped me to learn something new).
Will you be a reader?
Personally, I find the best stories are the ones that make you think; question who you are; change you for the better; and, encourage you to improve on the experience of others before you. So that’s my highly ambitious expectation of the book that I hope that you will get to hold in your hands and even better, take into your heart…
A few weeks ago I joined some groups such as “genyus”, whom of which have greatly helped my adjustment after the stroke and coping daily with others who understood. Inspired by groups like them, I wanted to talk about some of the challenges young stroke survivors that people born between the early 1980s to the early 00s might relate to.
We’re not kids but we also probably haven’t had some major life experiences as our more mature young stroke survivors (giving birth…yet etc). We also love technology! Oh, and we are super energetic (well, we try to be lol) Ok, this is being super stereotypical but seriously wanted to talk about others like me even though all of us are certainly different we are also alike.
This is written for 25 to 30 something-year-olds but if you’re a bit older and can relate I would love it if these tips helped you too 🙂 Here are some things I’ve learned from my own experience:
Sleep
Most young stroke survivors find it hard to sleep. Even though we fatigued easily during the day and feel tired…weird huh? I love this Calm app that I found Android and found that it really helps. I listen to “meditative sleep stories”..
Exercise
Again, something I use on my android phone (you can even go a step further and get a fit bit something like that). I use google fit, it automatically counts my steps throughout the day and I add my exercises. I currently do 4km in 12 minutes on the cross trainer (starting the intensity at level 1 for the first 3 minutes, then level 2 at 3 to 6 minutes, level 3 at 6-9minutes and finally, at level 4 9 to 12minutes); 10 minutes on the treadmill (about 800m) and 5-6 minutes on the rowing machine (or equivalent to at least 500m).
I set the goal of at least 30 minutes of exercise every day if I can. Then I add a few minutes every day doing some balance exercises on a balance mat. I guess the theme for me surrounds complacency – do not get complacent!
Diet
Before the stroke I had relatively healthy habits, even bordering on vegan, but since the stroke and being put on warfarin I cannot any green, leafy vegetable or anything high in vitamin K. As usual diet restrictions note, everything in moderation but definitely NO soft drinks, alcohol or overly processed foods (bye maccas/McDonalds!).
Mental workout
Every day I do a day of challenges set by the android app Elevateand read a lot, here are some great,inspiring books (I haven’t read all of them…yet).
Pregnancy
Like many young women at our age, also known as birthing age, pregnancy is a big question on my mind and while I don’t have all the answers and probably no one does know everything, joining a group really helps to alleviate fears and ask questions. Try joining groups like I did for example: Folks with strokes (Mothers).
Work
Getting back to work is certainly a challenge, not just mentally but physically too. Having a supportive team, boss and partner can definitely help the transition. I have been back now for about month. I have noticed that although I am much slower, I can do it. The physios and psychologists recommended me to go back but with limited expectations.
Where I could write 4 blogs a morning for other companies, I can now only write one in the morning as I find it hard to focus after and I get fatigued/tired easier. So I only work half days at the moment. They also suggested that every hour I take a few minutes to rest and do something else, like walk around, do some squats, stretches and re-focus my eyes (being a copywriter my eyes are always on a screen).
I have an international license but they drive on the other side of the road in the Philippines than in Australia. So you can imagine that is confusing even without having a stroke. I don’t have any tips around this but I have been told after a stroke you are not to drive for several weeks after.
Getting Around
Just like with my autoimmune condition, I always think of the “Spoon theory”. You have limited spoons now, no more unlimited spoons like before, so pick and choose your battles or outings.
Heading out tonight? It might mean skipping that afternoon run. If you’re planning to go to a party tomorrow night, make sure you rest up before then to conserve energy.
Use your phone reminders – I always seem to forget to take medicine on time, so make sure you have a regular alarm to remind you.
Remember safety first and go slowly! If you are on warfarin too, avoid accidents like cutting yourself or falling down. The first few weeks getting out of rehab, my hubby helped me to walk everywhere (he was the ultimate spotter) but when I am by myself, I am extra careful and cautious of where I am. No rushing! That train or bus can wait or you can catch the next one, do not risk falling over! Not only do you now bleed easier but you also have uncoordinated movements that unexpected falls could make you severely dizzy or worse, cause another stroke! Heaven forbid!
Music
I absolutely love music and it certainly helps in the path towards recovery. Check out my Spotify playlist and you can add your own tunes too >
Challenges
Each month I set a goal to work towards. Next month I am joining a 5km fun “run” (or walk in my case).
Diary
Instead of comparing to what you looked/acted like before the stroke, compare yourself just after the stroke. I could hardly walk or talk, so when I look at it this way, I’ve come a long way!
Sure, if I compare to before there is a big difference, I am a lot slower and unsteady now but I am slowly improving every day, even if it is the subtlest of changes.
Also keeping a diary is super therapeutic, you need to face your feelings not hide from them. Observe them! If you’re angry, why? Go through the motions and express them in your diary, this can be a good log for looking back and also you can see if your handwriting improved too (mine was terrible just after the stroke, well still is haha).
Remember “the more you do, the more you are”. So, don’t let yourself forget how to write, you need to write! It might look super messy in the beginning but after constant practice, it gets better. Even if you didn’t have a stroke, if you didn’t write for a long time, you would find it hard to write neatly again.
Finding your voice
Just after my stroke I lost my voice, literally, at first it was really hard to make sounds, then the words were mixed up, and then I just ended up really husky and breathy like I just had a cough or something.
Before the stroke, I loved to sing so you can imagine losing my voice was definitely a challenge! With a series of vocal exercises (such as a bottle filled with a little water and straw) I have slowly built my voice back and this coming Monday I will see an ENT to do a vocal clinic test to see how the stroke impacted on my vocal chords. I have done previously, but it was not to the extent of my ability to sing.
Currently, I can hum a tune, which is a huge deal! But I can’t hit higher notes or access my mid-range which I see as a part of my voice is paralyzed, or frozen, it feels tighter than usual. I have come across a couple of sites in the meantime: Dysarthria and Singing.
Why not me?
The doctors believe thrombosis caused by my autoimmune disease caused the stroke. But why? I thought to myself. It’s rare I found out. In a video I once posted on my personal social media, I told the story of one night at like 3am I looked in the mirror and I was angry. I kept asking “why me?” but the question I then changed it to was “why not me?”. It is a powerful thing to look in the mirror and ask why not, instead of placing blame on someone else or something else, it’s on me, which leads me to the “real” why question, the “why” that I could control. “Why did you survive?” and it’s up to us to answer that, we are survivors for a reason, hold onto that and keep going!
Emotional Rollercoaster
It may seem that I am not that bad, well let me just start by saying thank you, I work hard at appearing “normal”. Sure I have my days, ups and downs, challenges just like any other stroke survivor, what keeps me going is the love of my family – especially my hubby. I know it can be super hard dealing with emotions but make sure to show appreciation to your loved ones! If you ever need a friend to vent to or share your accomplishments, I totally have your back too! 🙂
I hope you find these tips helpful, what about you? Any tips to share for your stroke recovery?
Are you a young stroke survivor? Beat depression and feeling the blues with these catchy tunes.
The Requirements
A catchy beat
A strong, positive message
Examples
These songs I feel are great for the young stroke survivor, I listen to them while working out and doing rehab exercises:
– “What are you afraid of?” by Kerrie Roberts – “Overcomer” by Mandisa – “Fight song” by Rachel Platten – “Fighter” by Christina Aguilera – “Alive” by Sia – “Never give up” by Sia – “I am” by Mickey Shiloh – “Stronger” by Kelly Clarkson – “There’s nothing holding me back” by Shawn Mendes – “Lose Yourself” by Eminem – “Confident” by Demi Lovato – “Monsters” by Katie Sky – “Who you are” by Jessie J – “Champion” by Chris Brown – “Invincible” by Kelly Clarkson – “Try” by Mandy Harvey – “The Greatest” by Sia – “Reaper” by Sia – “Survivor” by Destiny’s Child – “Roar” by Katy Perry – “I Dare You to Move” by Switchfoot – “I believe I can fly” by R. Kelly – “Hero” by Mariah Carey – “Give it a go” by Timbaland – ” Am I wrong” by Nico & Vinz – “I’m still standing” by Elton John – “Dear Life” by Delta Goodrem – “Rise Up” by Andra Day – “Not alone” by McFly – “Move (If You Wanna) by MiMS
Hi, my name is Camille and at 26 I had my first TIA stroke, yes that was just the beginning of my story. My most major and final (well that’s what I am telling myself) ischaemic stroke happened recently, I was 27. It’s a bit unusual but I’m a survivor. So many people told me this is my chance and they’re right – this is my chance to be everything I can be. In this story, almost fable-like, I hope you don’t have to go through my young stroke experience to learn my lessons. Love and light, Cami xo
Vacation Intentions
Bali. The ultimate vacation destination. To say I was excited is an understatement. Not only to see Bali for the first time but my family who lived overseas for the first time in months.
On the second day in Bali and I could tell something wasn’t quite right. Exhausted and irritable, I put it down to being jetlagged, I needed to rest. My second day was uneventful (seemingly) and I had a migraine (unsurprisingly) I’ve had one almost every night for 7 years.
In the middle of the night
The second evening comes, it was 2 am and I was beginning to panic. I had no strength on my left side. I grew worried because breathing was getting hard. My sister was sleeping in the bedroom next door with her hubby and two little girls. I decided to try and wait it out till 8 am. 15minutes passed by and I was starting to truly panic. It was hard to even take a sip of water. I was going downhill fast and I felt desperate. I called my sister “Gala!” (her name is actually Gisella), “Please take me hospital!” I cried. I left a few voice messages on Facebook messenger to my hubby telling him about my plans. He’s a cluey one, that guy. He had booked a flight to Bali first thing in the morning, despite me telling him not to.
I WHAT?!
Thank goodness he did. After heading to an international hospital, several hours later (and injections) I got CT-scan results. I told them I’ve had a migraine before. Then they turn to me and say I haven’t got a migraine, I’ve had a stroke. If ever there was a wtf moment this was it. I was 27, on holiday in a foreign country, this couldn’t be happening right? So, that’s the beginning of my tale.
I literally woke up to a nightmare, only this was very real and truly happening. I had a major ischaemic stroke caused by thrombosis which can happen, but rarely, in those who have polyarteritis nodosa. It would take me at least 8 months to walk, talk, swallow (eat & drink) properly.
In the next blog posts, I’ll be tackling each “lesson” head on that I encountered on my journey. Thanks for tuning in 😉
Having an autoimmune disease makes it hard to stay focused. A way to practice the goodness inside of us and remember why we do what we do is theme days. Days where we consciously have an intention. Go about each day as usual with the added theme. Not sure what I’m talking about? Have a read below for some ideas:
THEME DAYS –
Motivational Monday
Keyword: INSPIRE
Quotes to set the tone for the week start this day off.
Meditate for 5-10mins today, if not everyday!
Create a music playlist for the week to get you pumping
Set out business goals and schedule for the week
Find and watch a video of an inspirational person
Transformation Tuesday
Keyword: PROGRESS
What are images to inspire you to do and be better yourself?
If you were asked what’s a lesson you need to learn in this lifetime, what would it be? Could you do something today towards learning this lesson?
This day will take a bit of time for introspection. Look at yourself from the outside, what’s something you know as a weakness and how can you make it your power?
Select a workout to follow for the rest of the week til next time
Post workout selfies; wacky work out gear
Working Wednesday
Keyword: FOCUS
What can you do right now for your career? So it’s not just about a new exercise activity, but literal work activity – and in my case, what can I do to further my writing career? Use this day as a reflection about your work.
What are things I need to do in my business to get to that next step forward, and if I don’t know what that is, what are my business/career goals?
Do at least 3 small things or 1 major thing on your business to-do list
Throwback Thursday
Keyword: GRATITUDE
Reminisce on the past things to learn from and also bring back e.g music videos, pics etc.
list down at least 5 things you are grateful for and write down why
What is something meaningful that happened to you in the past 24 hours?
Food for Thought Friday
Keyword: CONSCIOUS
This day is all about reflecting on food choices of the week as you can eat out on Fridays
Find and share favorite healthy recipes
Take a pic of your cheat meal
Try and share a new smoothie recipe
What are your favorite snacks and what are some healthy ones you can add?
Saturday Solutions
Keyword: DETERMINATION
Get things done that were missed during the week – e.g tidy & clean up
Today is project day – small fixes and DIY at home (e.g balcony garden) Check out Pinterest for must try projects
Soulmate Sunday
Keyword: PASSION
On this day, share a workout you could do together with your partner.
Think #Sundates – going out with the your soulmate!
Think of future plans – daydream together and my favourite, Sunday is the perfect day to make a #FelizDay (happy day) here you or your partner takes the reins for a full day where you eat, what you do, suprises galore!
If you’re single, don’t worry Soulmate Sunday is for you too. It’s a day to love yourself too, because if you can’t love yourself how can you love someone else? Do something for yourself, go out and get a manicure or a massage, go for a nice walk, practice being YOU, I know sounds weird but think, what makes you unique? Your sense of humor? Your sense of style? Whatever it may be, don’t keep all that goodness to yourself, get out there! Join a new meetup group, step outside your comfort zone to meet new people – you may discover something about yourself too.
I was looking through my photo albums on my computer last night when I stumbled on these pictures of me wearing a bright pink jumpsuit. Besides the fact that it’s hilarious looking back on my fashion choices at that age, I also felt happy being reminded of that particular day. Continue reading “The Pink Jumpsuit”→
The bed felt cold, lonely and I couldn’t wrap my head around the fact that I was in it. It scared me. They told me they would run a few more tests and that there wasn’t anything to be worried about. I closed my eyes, took a deep breath, and felt the gentle squeeze of my dad’s hand. It felt familiar, reassuring.
We had been traveling the country over the past few months to get answers. What was happening to me? I was 12 years old and I couldn’t recognize myself anymore. Black-bluish scars and other red blotches of raised red skin bombarded my legs. There were days when I woke up and couldn’t get out of bed. My knees so stiff my mum had to put a warm compress beneath them to help stretch them out (later I would find out this is what arthritis is).
I would get ready for class and get so frustrated for doing just simple tasks like trying to brush my hair. These skin disturbances or “lumps” as I always referred to them as were spreading all over my body, and it wasn’t just that they looked bad, they were painful to touch and restricted the mobility of the joint they inhabited.
These amongst a myriad of other symptoms were my taste of what an autoimmune condition could do to you.
It would take me 8 more years, 4 misdiagnoses, 8 hospitals, 12 specialists to get “officially” re-diagnosed with Polyarteritis Nodosa.
Beginning the journey
From neurologists to rheumatologists and otologists (ok you get the gist, no pun intended, ok maybe it was) and numerous GPs & ER teams, innumerable breakdowns and 8 major flare-ups, is how I got to the Polyarteritis nodosa diagnosis.
Looking back, I believe I have learned so much and I feel that my lessons could help a lot of people. Polyarteritis Nodosa (PAN) is one of the many rare autoimmune conditions that exist today.
An autoimmune disease in my own words, is when the body believes there is an “enemy” inside, even though there isn’t. It’s when our body’s tissues attack itself, instead of this so called enemy that the immune system is detecting.
An autoimmune condition can manifest in many ways. There are more than 80 different autoimmune diseases discovered so far. One problem with these conditions is that some of them mimic each other. It is always best to get the closest diagnosis you can. While a lot of other Autoimmune diseases are treated are similar, being diagnosed can change the whole course of your condition, especially if you are getting treated for symptoms you aren’t even experiencing.
Research shows that PAN occurs more frequently in males, and in the age groups of 50-60. However, obviously cases like mine exist.
Juvenile conditions
Looking back and having all the knowledge I have about conditions like mine, I realise the process started in me when I was already 12 years old. I feel strongly about educating people about this condition, while it is a serious illness, it can be treated and you can live a full life. Albeit a little bit different where you will need to make some changes, but never lose hope. There is a large network of people out there going through similar cases even if it isn’t exactly PAN.
In the next few blog entries, I would like to tackle other issues that those with PAN or autoimmune conditions face and help give some advice to get you through your dark days.
Having an autoimmune condition can be very frustrating, you may go through a lot of times when this “invisible” or faceless enemy inside you really tries your inner strength.
Trust me, I’ve been there. It can be a lonely, scary journey, but you need to keep your friends and close. While it will be hard for them to understand, know that they love you and will learn to cope, as you do as your condition progresses.
In the future of this blog, I also want to make information more readily available for you. Here you’ll find all the information related to PAN and some other similar autoimmune conditions.
One stop info hub
I personally found that it has been hard to get all the information in one place, and have been researching for answers on my own for years. I think it is good to educate yourself to understand what is going on in your body and why. But it is also best to talk to your doctor. Be open and honest with them. If you feel you aren’t getting the support you need, it is okay to get a second, or a third opinion, heck I got twelve of them. I’ve seen all kinds of doctors, and with each experience, you can take a little bit of wisdom with you.
At the end of each blog entry, there will be links to these informational sites, the blogs themselves, however, will be firsthand encounters and information from a patients point of view. I believe we need to equip ourselves with not only medical information but “emotional” information. Conditions like these don’t just affect our bodies, they can affect our emotional well being.
What is Polyarteritis Nodosa?
Here’s a short video that helps explain PAN briefly:
Polyarteritis nodosa is an autoimmune disease is a condition in which your body’s immune system mistakenly attacks your own body.
With Polyarteritis nodosa, small and medium-sized arteries (blood vessels that carry blood from the heart to the rest of the body) become inflamed and damaged. The inflammation of the arteries affects many different organs, including the skin, CNS, peripheral nerves, gastrointestinal tract, kidneys, heart, joints, ear, nose, throat and lungs. With cutaneous (or skin) PAN, leukocytoclastic vasculitis can be seen.
If you want any advice, would like me to write about a specific topic or would like to share your story here please feel free to contact me via email or on social media.
