Our weaknesses are not always visible, our scars are most certainly not always on the outside - but that does not mean people are not struggling, battling with things greater than we initially see.
The optimism that oozes out of this soul is inspiring on its own but it’s the way Sarah Chippindale has learnt to live with the invisible disease MS that has us screaming YOU GOT THIS GIRL!
I guarantee if you have ever had the pleasure of meeting Sarah, whether it be for twenty years or twenty seconds, you walked away feeling completely elated and more than likely laughing out loud, am I right? I thought so.
Beaming with love and endless smiles, this gal just always seems to make the best out of every situation. No, not every day is at level 10, but even though on the inside she is suffering, she is the kind of girl that will always make you laugh at the most inappropriate times, get you kicked out of hostels in Santorini and be a comforting shoulder to cry on whenever or wherever its needed - her heart is simply made of gold.
Fortunately for me, I have had the privilege of knowing Sarah throughout my childhood years and into the present. Not only have we shared crazy memories of traveling Europe together, copious weekend adventures, but also the journey of growing from young friends into adults. While throughout Sarah’s diagnosis and the later years I became more aware of MS, I felt what I knew was only scratching the surface, statistical kind of stuff. God knows she is the world’s most open person but some of the questions were just never raised. Was I too scared to ask? To know? Did I not want to push the boundary? Did she find it hard to talk about? Well, all of that changed and I went in deep, in the piece below Sarah shares with me the struggles and triumphs of living with the invisible illness MS. She is stronger than ever and deeper in love than she could have ever imagined, all while living with an illness that has no cure and no answers – she is simply amazing.
For the month of May 100% of all proceeds from the sale of our MBL Lipstick ‘RUBINE’ will go straight to MS Australia to help find a cause, a cure and most importantly support the people within Australia living with MS.
One thing to remember is, there could be 100 people with MS sitting in the same room and every single person has a different story to tell. Everyone’s symptoms are completely different.
For me personally, I woke up one morning when I was 19 (January 2010) and my legs felt numb. After a week of having little feeling in my legs, we went to the doctor. It took months to get to the bottom of it countless tests, scans and medical history reports.
After seeing multiple doctors, nurses and neurologists we finally had a diagnosis. They could trace back earlier symptoms from my childhood and it is said that when I was diagnosed, I may have had it for 3-6 years prior.
The first few months were really hard. I started treatment almost immediately - I was in and out of hospital getting steroids to try and stop the progression of the ‘episode’ I was having as well as giving myself injections everyday, however, after 4-5 months I had more tests to show that I was not overcoming the disease. My neuro team than gave me the option to choose between a few options, we went with a new drug called Tysabri which had many high-risk factors, some fatal, but fast forward 7 years on and I have been going extremely well on this treatment. I go to hospital every 4 weeks for an infusion which lasts a few hours and have not relapsed since being diagnosed.
Are the effects visible/silent?
For me personally, all of my symptoms are not visible. While this works in my favour 90% of the time, it makes it very hard for people to understand what I am going through. A lot of people do not understand how I can be sick, or suffer from extreme fatigue when I look so healthy? It can be frustrating and over the years I have learnt to try and keep it to myself as much as I can to save the awkwardness of having to explain the differences to your afternoon ‘nanna nap’ and how I am feeling. In my favour, I do look healthy!
What Is MS?
Multiple sclerosis (MS) is a condition of the central nervous system, interfering with nerve impulses within the brain, spinal cord and optic nerves.
The best way my neurologist explained what MS does, made it very easy for me to understand: Think of a phone charger and the outside rubber protecting the wires underneath. Basically, our nerves are covered by what is called Myelin which protects them. If the phone charger does not have the plastic on the outside, it will not work. This is the same with our nerves. My immune system basically attacks my body and for whatever reason, thinks that the myelin is bad and try’s to ‘cure it’ - which instead leaves the nerves without protection and can cause loss of mobility amongst other symptoms.
MS affects over 23,000 in Australia and more than two million diagnosed worldwide. Most people are diagnosed between the ages of 20-40. Unfortunately, there is no known cause or a cure.
How does MS affect your every day living?
Every day is different but the worst thing for me is the fatigue. I usually sleep anywhere between 12-18 hours a day. Fatigue with MS is not just the average tiredness one may experience. I physically and emotionally cannot get through my day without the sleep I require. At times, it is debilitating and people do not always understand it as I look healthy and well on the outside.
My legs also ache and over the years I have required copious amounts of pain killers to control the pain. This is a dangerous cycle within itself, as pain killers are not always the best/safest option, however at times I have had no other option. These pain killers can also become very addictive and coming off them requires a lot of strength, time and patience.
How does treatment work?
There are many different treatments for MS. Over time, there are more and more options available which is fantastic. Every 4 weeks I go down to the John Hunter Hospital and sit in an infusion lounge for a few hours while my drug is given to me through a drip line.
There are also oral medications available as well as injections. All have differing side effects and are supposed to help slow the progression of the disease down.
Can it be cured?
Without a known cause, there is no a cure. Hopefully in time this will change with the enhancements of technology and research.
What is it like to deal with MS emotionally?
I always find this question hard to answer because simply, I do not know the answer. I don’t know if I am still in denial and have not accepted it, therefore not dealing with it, or if I am genuinely okay with it.
To be honest, I do not feel hard done by. I have an amazing life and cannot say I have ever missed out on much. For some, they cannot walk, talk or care for themselves so perhaps if I was in a similar situation, emotionally I would be answering this differently.
The hardest part is seeing my family and friends suffer before me. My parents and sister initially suffered terribly. My mum would cry all the time, dad could not talk about it and my sister would block it out and pretend it was not happening. I have always said it is so much easier being the patient than seeing someone you love unwell.
Emotionally, apart from seeing my family suffer, falling in love was very hard. I felt I would be a burden on my partner for the rest of her life and that did not sit right with me. But I am more in love than ever before with my beautiful fiancé. She is a nurse and the thought of her going to work caring for people every day and then having to come home and do the same thing, scared the hell out of me. In the end love always wins and although some days it can be hard, having one another is the main thing.
Who is your biggest supporter?
Initially, I was so young and living at home so it was always my Mum, Dad and my Sister. They were there for the toughest times of this journey. During the diagnosis, Mum and Dad would take countless days of work and come to every appointment with me. They were there from the beginning and will be there until the end. My sister would have every date and time of every appointment in her diary and be in constant contact to ensure everything was going okay. I owe them my life.
I am now living out of home and have started the next chapter of this journey with my fiancé. Megan has/is helping me through this part of my illness, more than anyone in this world. The hardest thing for me, is knowing she watched her aunty pass from Multiple Sclerosis 3 years before we got together. I would be lying if I said it was easy for her to initially commit, however in 5 months we are getting married so it goes without saying, she is my biggest supporter and my deepest love.
I also have to make special mention to our first born, George. He is our four-legged little Staffy X French bulldog and no matter how terrible or painful my day is, coming home to him makes it all better.
Who keeps me going/motivated?
Megan. Always Megan. I want to be the best and healthiest version of myself for her. She has chosen to stand by me no matter what could happen so I owe it to her and our future. She knows that tomorrow I could wake up and never walk or talk again and is still invested into our love 110%. If I do not try and fight this with everything I have than I am letting down the best version of myself, which is her.
I do not know where I would be without her love and support. I am thankful every single day I wake up alive and well, that she is next to me and holding my hand through all of this. This fight would not be worth it without having her.
What is the greatest lesson you have learnt from living with MS?
Initially when being diagnosed, we were not sure if I had MS, or a brain tumour. For those few weeks, I knew what it felt like to feel as though tomorrow could be your last day. Honestly, it was the greatest thing I have learned throughout this journey. If everyone lived everyday as if it was their last, then I believe this world be perfect. We would all be happy and doing the things we love. As hard as it was, it has made me see the world very differently and I am one of the lucky ones to understand that.
I have also learnt that no matter what, every one of us have our own problems/journeys and not to judge anyone. I remember growing up and thinking, how is my life so perfect. I watched my best friend suffer a great loss when we were so young and always wondered why I got to have it so easy? I could not understand that at all? It was not until I got sick than I realised, we all have our own hardships, some great, some small but no matter what, be there for your family and friends, enjoy every day as if it is your last and do not whinge about the little things in life. If it is raining outside, don’t sook about it, go and dance in the rain.
What are the benefits of people being more aware of MS?
Do not ever judge a book by its cover – Being aware that even though someone may look ‘normal’ from the outside, they still may need assistance. I have a disability parking sticker and although I do not need it 90% of the time now, when first diagnosed I used it all the time. People use to judge me and make nasty comments all the time. Don’t ever judge a book by its cover. That is such a cliché comment, however very true when living with an invisible illness. Just because you may not be able to see something with our own eyes, does not mean it does not exist. Be tolerant of others and never judge anyone.
How does funding help people with MS research?
Funding helps people with MS in many different ways. For me, the heat is terrible and exasperates my symptoms even more than usual. MS Australia were able to provide me an air-conditioning unit which especially in summer, has helped me immensely get through m day to day life. Something that seems so small was gifted to me in order to keep pushing and pushing.
Not only does funding go towards families who need assistance, it also goes towards the science behind finding the cause of MS as well as testing to find a cure, and what more could we want than a cure?
As well as sending a million hugs and kisses to everyone, here at MBL Beauty, we wanted to do a little more! 100% of all profits from the sale of our signature ‘RUBINE’ Red during the month of May will be donated to MS Australia to support the research to finding a cure for MS.
So, grab yourself a little Rubine Red and KISS MS GOODBYE.