By Jessie Ace

Going from perfectly healthy to DISabled in 3 days was pretty hard going, what would you do when your world suddenly turned upside down?

‘My arm has gone dead.’ Not the worst thing in the world you may think but for me, it meant my life changed forever. 

I was 22 and had been working non-stop day and night to complete my university degree. I’d also been working hard setting up a business in my second year because the promise of a job after seemed pretty slim.

I had huge plans for when I left university. I was going to start my brand new career as an illustrator! Designing anything that could hold a pattern or character. I had big dreams of everyone owning something with one of my designs on. I’d managed to get a book deal for when I left, an agent to represent me at major trade shows around the world and I even had my work already stocked in some boutique stores while I was still at university! I was so excited. 

All I needed to do was to finish university and start my new life I’d worked so hard for. Pretty easy right?

But life never quite goes as you expect it to, does it? 

The morning of my last day at university – typically the very LAST day – I didn’t quite feel ‘right’. I’d been working to exhaustion most days so the fact that the left side of my body had gone weak, numb and wobbly sort of made sense to me. I was just stressed, right? 

Wrong. 

It was still numb and weird after a week so I was begrudgingly dragged by my boyfriend to my GP’s office for an appointment. Nothing could be wrong though, I was 22. I was perfectly healthy and had never, ever gotten sick, I was just exhausted and stressed, that’s all. 

When the doctor announced she thought I’d had a hemiplegic migraine (which causes localised weakness and numbness) it made total sense.

“It’ll probably come back in a few weeks”, the doctor told me.

‘Told you there was nothing to worry about!’ I declared to my boyfriend.

Little did I know that an hour later that feeling–and the diagnosis for that matter–would completely change. 

My phone rang just as I’d gotten home. It was the doctor. She’d been talking with a colleague and together they came up with the idea I could have had a stroke.

She ordered me to go to Accident and Emergency at the Hospital, right now. 

‘Shit’. I reacted.

A stroke?! I thought she was crazy, but at the same time, I’d been working so hard that it kinda made sense, plus it meant it had already happened right? So it couldn’t possibly get worse from here. 

It got worse. 

After coming out of the hospital, a week later with a diagnosis of Multiple Sclerosis, (what the heck is that by the way?!) I thought my life was literally, truly, over. 

The illustration business I’d painstakingly built up over the last 2 years was taken away overnight due to the lack of strength in my hands and inability to hold a pencil. 

My university degree that I’d poured everything into for the last 3 years? That felt invalid. 

Everything I knew was gone. 

My life had gone. 

I was gone.  

It took a good few years to accept my diagnosis. A good few years of feeling sorry for myself, blaming myself for not looking after myself more. Constantly complaining, “Why me?!” or “What did I do to deserve this?” People that I was friends with no longer wanted to know me. They didn’t understand what MS was. Neither did I. 

“What do I do now?” I thought. 

I’ve got to turn MS into something good. 

I decided to use it to help others to understand the condition and to help inspire other people to know that their life is not over, in fact, I wanted to tell them it’s only just beginning. 

Firstly, I created the ENabled Warriors. An alternative, positive group, to help people who are young and newly diagnosed. I hated the way support groups online were full of horror stories and negative posts. I had a negative experience going to an MS group when I was first diagnosed and can understand why there are not more young people going to these.

I started blogging for the National MS Society, MS Society, and MS-UK who each encouraged me to get back into illustration – I was very hesitant in case losing my hands happened again. You can take  a look at my blogs and illustrations here: www.Jessieace.com

Most importantly, I wanted to bring people with chronic illnesses together to share their empowerment stories. I created the DISabled to ENabled podcast and have interviewed people such as CEOs, famous radio DJs, even Paralympians, and Ironmen! 

But it wasn’t easy to get to this stage. At the start, I had zero confidence. I couldn’t hold a conversation-I didn’t know how! For years I’d been quiet and un-confident with who I was. I didn’t want to live that way anymore, I wanted to be the confident person in the room, the one not afraid to speak to anyone. Over time I taught myself to be confident. I taught myself to manage my anxiety. I taught myself to manage my symptoms (without extra meds). I want to pass on what I’ve learned to others. 

I have far more of an appreciation for life now. I appreciate how good it feels to type with two hands when I can and to be able to take my dog for a long walk in the sunny woodland. Listening to the birds chirping in the trees and the cool air of early morning against my face. 

Life is truly amazing and I am grateful everyday for having Multiple Sclerosis. 

(*A few weeks after my initial diagnosis, I lost the use of my right hand too, leaving me unable to hold a pencil)

What was your diagnosis like? Let us know in the comments.


2 Comments

Trudy · June 17, 2020 at 8:32 am

Hi Jessie, amazing how similar your journey to diagnosis was to mine (haven’t heard anyone else with such a similar path), although I had one big surprise extra to yours – but with the common theme that MS can be a tricky one to diagnose. I had blotches in vision from my left eye and left side weakness. I googled and diagnosed myself with a dislocated retina lol – went to optometrist and they said “nope all good, go to dr”. Went to dr who diagnosed hemiplegic migraine. Went home and by that night I was so bad an ambulance took me to Emergency department as they thought I’d had a stroke. But here’s where my story veered onto a very scary path – the emergency dr looked at my MRI and diagnosed it as metastatic cancer! He said I likely had cancer which had metastasized to secondary cancer in my brain! So the next two days were a million scans and tests as a hunt for where the ‘primary cancer’ was – but nothing showed up. Then a radiologist went back to my brain scans and told my gp to get me to a neurologist as it might be MS. I got straight into a neurologist who told me I had 30-50 lesions and probably had MS for 20 years or more. I was thrilled it was MS (even though I didn’t really know what that was) because it wasn’t cancer. So, quite the ride towards diagnosis 3 years ago. I may have gotten away with being relatively ‘normal’ in health before my diagnosis but that massive relapse is one I haven’t bounced back from so well. Although as you know, we can still walk and talk and appear ‘normal’ with people not understanding what’s really going on (until fatigue makes my balance go then I use walking stick or scooter). The first support group I went to actually traumatised me more than the diagnosis. But time and my faith have helped me adjust. I’m on Tysabri and it’s doing a great job so far yay! Thanks for all your doing Jessie and I pray you continue to enjoy good health and stay ENabled!

    Jessie · June 17, 2020 at 9:31 am

    Sounds like you went through quite a journey Trudy! I am so grateful you are ok and hanging in there. I’m really glad my story has been able to help you 🙂 You are amazing! Stay #ENabled! Jess x

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