When I lost you, I lost part of myself and my whole world changed in a blink of an eye…

Hi everyone 🧡 My name is Ellie, I’m 27 years old and I’m from Lincolnshire. I have worked for Lincolnshire County Council since I was 16 and have had a range of roles working in administration for various departments, specifically within Children’s Services.
For the last 5 years I have worked as a Senior Business Support Assistant within a multi agency setting, primarily addressing child exploitation and missing children.

From the moment I turned 21, my whole life changed. It was the year 2016; I met my soul mate and we were at the beginning of our relationship, I just celebrated my 21st birthday with my family, friends and boyfriend. Little did I know, that it would be the last birthday I would celebrate with my older and only sister, Katie. I had a big American themed birthday party as I was shortly about to embark on a summer doing Camp America. My sister played a huge part in organising the party. As a graphic designer, she custom made my American themed invites.
For context my birthday is the 1st April; fast forward to the 29th May 2016, I went out for my farewell meal with my boyfriend, parents and my sister… I waved goodbye as my sister drove off as I was leaving for 9 weeks. Little did I know, that was the last time I would see her alive. On the 30th May I flew to Florida, USA. On the 31st May my sister had a fatal car accident and was rushed to hospital by air ambulance. She had 2 major surgeries; 1 to repair the main artery to her heart and the other 1 was to correct the damage to her lower intestines. Both of which she would have survived… on the 01/06/2016 having only had 1 full day and 2 nights, I got a call to inform me of the accident and it was my mum on the phone telling me I needed to come home. It was a moment that will haunt me forever. That same day I flew home, it was the longest flight of my life. I got home the following morning, it was a Thursday… my boyfriend picked me up from Gatwick and we went straight to Nottingham, QMC. I remember walking in, Katie’s bed was the furthest one at the end of the room… I had to walk past some truly devastating scenes, but the worst was yet to come, and that was of my sister. I was heart broken. My sister was in an induced coma, the damage to her brain was so extensive that the doctors warned us early on that it was highly likely she wouldn’t make it and even if she did, she would never be Katie again. As the weeks went on, the hope that she would wake up faded away.

Katie died on Thursday 16th June 2016.

The reason I’m sharing my story is because I truly believe this is what ignited the flame inside of me and what set the ball in motion for my MS. In the weeks that followed from my sisters passing, I remember being in the supermarket and I remember feeling so overcome with grief that it felt like the room and everything around me was spinning. Looking back on it now… could this have been a sign?
In December that same year, I had 2 falls days apart… both involving stairs and both of which I landed on my right hand/arm. In the days that followed, I experienced pins and needles / numbness. By the time I got a doctors appointment (3 weeks later… and it was now January 2017)… the pins and needles was in both arms/hands and it was chronic. Little did I know then that this was my first relapse.
I guess I was lucky that from the initial doctors appointment, the GP identified that it was likely to be neurological and referred me to a neurologist. To cut a really long diagnoses story short… (that’s another blog in itself!) I was diagnosed with RRMS on Thursday 14th June 2018 (2 days prior to the anniversary of my sisters death).
My journey to my diagnosis was a traumatic one, not only to have lost my only sister but to be diagnosed with an incurable disease. I truly believe that my life followed a series of ‘unfortunate events’ which fundamentally lead to my diagnoses. In the years prior to my sister passing, it wasn’t smooth sailing and from the research I’ve done, I’ve drawn a conclusion to why I ended up on this path. (Please note this is solely my own opinion and at this time there is no concrete evidence to suggest why a person gets an autoimmune disease).

Trauma might not be the case in everyone’s MS diagnosis but it certainly played a huge part in mine.

I had the Epstein Bar virus (Glandular Fever) when I was 15 years old; I remember being very ill! History of neurological disorders within my family; my grandfather had Parkinson’s (Yes I’m fully aware that it’s not hereditary). Finally, my sisters passing.
I do truly believe, having spoke to multiple people with MS, that trauma is what set my MS in motion.

I didn’t write this blog for any sympathy, only to open up the discussion into MS being led by trauma. Trauma might not be the case in everyone’s MS diagnosis but it certainly played a huge part in mine.
I miss my sister everyday. I am now the age she was when she died, there was 6 1/2 years between us. It’s been so hard coming to terms with the fact that’s my sister is gone and I will never share any more moments with her. I try to live everyday for the both of us and I’m determined not to let MS get in the way of that! 🧡 when I was diagnosed, it was like I was grieving for the life lost that I should of had with my sister being part of it and also, I was grieving my health and my future prospects.

I am truly thankful for one special person who has stuck with me despite my whole world falling apart, he’s helped me to pick up the pieces and has truly been the best thing to have happened to me. It’s ironic that I met Daniel the same year that also happened to be the worst year of my life, somehow that same year was also the year I met person who would become the best thing that ever happened to me.

From the moment my sister passed away, I stopped believing in fate and the expressions that go with it such as; ‘if it’s meant to be it’ll be’ and ‘everything happens for a reason’ because I can’t fathom what reason can justify taking my sister away from me. I can’t fathom why I was struck with MS whilst grieving for my sister.
I’ve come to the realisation that we have no control what happens to us, we can only control how we respond to such traumas. If I can share any piece of wisdom, from all the dark places I’ve been in, it’s that I’ve always found the light from within to live out my life the way I know my sister would want me to. I’ve realised that tomorrow is not always guaranteed and whilst having MS truly sucks, it’s shaped me into the person I am today.

Remain positive, always! And I know there will be days where you get knocked back and trust me I have… since being diagnosed over 4 years ago, I haven’t had a stable MRI since… but I won’t let that break me.

Remember, you’re not facing this battle alone. Whilst our friends, family and loved ones don’t understand the pain and torment we feel, they are… battling alongside us and supporting us all the way.
Together we are stronger together 🧡