“My arm feels dead"
Not the worse thing in the world you would think.
But what that meant, changed our world forever...
One thing that not a lot of people know about us is...
Around 3 years ago we went through a very personal struggle together, we had the kind of struggle that can make or break a relationship. I want to share this with you in the hope that it will inspire you.
I was in the final project of my design crafts degree at university at the time and my boyfriend Paul was singing for a living. I’d been at university for 3 years and had done 1 foundation year. I had ambitions and dreams of becoming a famous designer and taking the world by storm. I wanted my designs on everything, in every household; everyone would have my designs on their plates, cups, scarves, dresses, doormats, books, dogs, everything!
I remember waking up that morning of the last day of my degree and my left arm felt dead and my left leg was strangely numb. My partner and I assumed that I had just slept on it funny and it would wear off throughout the day.
It didn’t, days went by and it didn't get any better...
I was starting to worry about it now. I'd handed in the last project of my degree and booked a doctors appointment the following day.
What the doctor said to me changed our world forever.
�The Doctor said that she thought I had, had a stroke! That was crazy I was only 22 years old!
Paul and I were told to go to the hospital where I had a number of tests done and a couple of overnight stays.
What we learned was even worse and came as more of a shock...
5 doctors came into my hospital cubicle one afternoon and stood around my bed, all with clipboards in hand and white coats on. They looked concerned. It made me nervous.
The tallest, oldest looking one explained that I had not had a stroke...
'Ok great,’ I said, ‘then… what is it?' He said, "Well, unfortunately you have multiple sclerosis (MS)”. My heart sank.
I thought my world had ended. It sounds a little dramatic now, but at the time I had lost the use of the left side of my body and shortly after leaving hospital I lost the use of my right hand too.
I had technically just left university and had been setting up a business as an illustrator during my second and third year. I’d had galleries and boutique stores wanting my work, an agent who wanted to sign me and even a book deal ready for when I left.
Trouble was I now couldn’t hold a pencil let alone draw. I also had the added pressure of being engaged and planning our wedding. ‘Would I be able to even walk down the aisle?’ I kept asking myself prodding at my one numb leg. I was so worried and so scared, soon everything went from bad to worse.
The next year was one of the toughest of our lives. When you get news like that it rocks your world and your relationships get seriously challenged. A lot of my friends stopped speaking to me.
Can I ask you a question?
Have you ever had to purposely inflict pain on your partner?
My husband Paul has...
3 Times a week he had to inject me with what felt like acid to stop the MS getting worse. It came out worse than a bee sting each and every time I had them and it was into bruises that couldn't heal quickly enough before the next injection. It was like a scene from Rocky. I was becoming progressively more bruised, sore, scared of the new symptoms I had to deal with and more depressed. I felt like I had no one around me that understood.
My phone was constantly crying out to my MS nurse for help to be told she could still do nothing. I was on a waiting list at the hospital to go onto Tecfidera (A new drug treatment). Everyday I woke I hoped and prayed today would be the day I got the call. It felt like it never came.
I managed to get a job as a graphic designer in fashion as that just involved moving a mouse and clicking – something I learnt to do well with my dodgy hands. I didn’t tell them I currently couldn’t feel my hand; I felt they didn’t need to know; MS was my secret that I was not willing to share with anyone.
When Paul and I moved from Leicester back home to Swadlincote in Derbyshire the commute became unbearable and I had to eventually leave my job and work as a freelance designer, which is extremely hard but a lot easier on my body.
Now however, MS isn’t a secret, in fact I tell anyone that will listen. What changed? Me. Instead of being in my depressive cycle I CHOSE to come out of it. I CHOSE to change my mindset and change my circumstances. I took up The Miracle Morning and created myself a morning routine of exercise, meditation, affirmations, visualization, reading and journal writing. I love it.
One day, thankfully, the call came.
As soon as the pharmacist rang me and said to come in and pick the tablets up I bust into tears. It was the biggest relief I had ever felt.
Now that things have settled down for me and I've finally got my head around my diagnosis I feel able to be present and helpful towards others.
It is now my mission to help others come to terms with their illness (particularly young people) and to use my design and writing skills to raise awareness of invisible illnesses.
I want to recruit you to join my fellow warriors and I on Facebook where I share funny MS/Invisible illness anecdotes, recipes and tips, click here: https://www.facebook.com/iiwarriorssupport/
Want to spread the word and do your bit for the MS society? Click here: https://teespring.com/stores/invisible-illness-warriors