Neil’s story

My diagnosis  

I was working and living in Edinburgh maintaining a healthy diet and regular exercise. One day, symptoms of numbness, pins and needles in both arms, feet, hands, and legs started. The GP immediately sent me to several tests, numerous times, all coming back with zero findings. Months later I attended my first neurologist appointment. The MRI came back with inflammation. After more MRIs and more tests, I wanted to know what caused the inflammation. I led a healthy lifestyle and had no medical conditions, so I had already narrowed it down to Multiple Sclerosis. I went to an MS clinic and was diagnosed with highly resolving remitting relapsing MS in January 2017. I was advised that despite the number of lesions on my brain and spine I would still be able to walk relatively well. The reality is that I couldn’t walk in a straight line and my walking was all over the place.  

I remember feeling alone when I was told. But it did not last very long as I knew I only had one life and I was in charge of how it would be led. There was no point feeling sorry for myself when there was, and there is not yet, a cure for MS. I decided immediately that giving up would never be an option.   

What helped me  

I discovered Overcoming MS through Instagram. I was eager to learn more about actual people living with MS. The website is a great tool for living your life with MS.  

What changed   

I was already living a very healthy life so not much has changed. I have always had a positive attitude and zest for life. The only thing that has changed is that I am now a full-time electric wheelchair user, and everything takes me much longer to do. However, life is not a race or competition.   

What still isn’t easy   

The most frustrating part is accessibility. It’s important to do in-depth research on access to anywhere you would like to visit. For example, for hotel accommodation I don’t rely solely on what is advertised or told on the phone, whether that be a travel agent or the hotel personnel. As I have learnt that what an agent says compared to the reality of the room is completely different. So many tour operators work from a tick sheet, therefore they have no real vision of what an accessible room actually looks like. Now I make sure to contact the provider by email stating exactly what I need to make my stay accessible.  

Life today   

It’s a constant struggle living with MS symptoms, every day and each hour, because is so unpredictable and the majority of the symptoms are invisible. As my MS has progressed from RRMS to SPMS it takes much longer to do everything. I had to admit asking for help in everyday tasks. This was extremely difficult as I am fiercely independent. However, life has been easier for me since I started asking for help.  

People see that you don’t look ill, therefore they automatically think you do not have a progressive chronic disease. You have no idea the amount of time I spend on the toilet as constantly feel the need to empty my bowels and bladder. As I do not want an accident to happen, I will frequently visit the bathroom, however, the majority of the time it’s a false alarm. But, I would rather be safe than sorry!  

It’s the little things in life that bring me the most joy, especially seeing my youngest niece and nephew grow.   

Music is essential at every moment -when I’m by myself it stimulates the mind and lifts your mood instantly.  

Nobody told me… you could still live your life fully in an electric wheelchair  

I was repeatedly told that I would not necessarily end up in a wheelchair. It was said as if I should end up in a wheelchair that my life would be over. As if I would not be able to leave the house.   

As a full-time electric wheelchair user, I do not leave my home often when I am at home in Belfast. However, when I get the chance to spend time in the sunshine I go outdoors. Just passing the seafront soothes the soul, and my energy is used wisely. I have learned to understand my limitations.   

I continue to complete physio exercises daily, even just a little when I know I cannot complete them all. Everyone is different with their MS, as no two people ever will experience the exact same symptoms. The majority of symptoms are invisible, so when we look good and happy, inside our bodies we are probably throwing internal fits.   

If you could watch someone with MS 24 hours a day, every day, for a year, then you would certainly see the rollercoaster of symptoms faced daily. One thing is for sure, we certainly did not ask or do anything to our bodies to cause the disease. We keep fighting and smiling.