Adapting to MS and Discovering Mobility Aids Lead to Freedom
I was diagnosed with relapsing remitting-multiple sclerosis (RRMS) in January 2017. I was 35, and I managed a base of cabin crew in Scotland and operated as a senior crew member once a week. In terms of work, I miss the fun and banter with colleagues and passengers.
It started with pins and needles in both hands, arms, legs and feet, and numbness from the chest down. I also had the occasional fall, whereby it felt like I was a deflating balloon. I would simply end up on floor, thankfully not injuring myself.
As the pins and needles in my hands made it extremely painful to use the keyboard. I made my line manager and HR aware. I continued to experience pins and needles in both sides of my body (and still do). In March 2016, my general practitioner ordered multiple blood tests for me, which all came back normal.
Next step was referral to a neurologist, followed by MRI scans, follow up appointments and more MRIs. I took the decision to step down from my position temporarily because of the pain in my hands.
In October 2016, I was officially diagnosed. I was simply given a booklet of disease-modifying treatments I could choose from and told I could still walk relatively well despite the multiple number of lesions on my spine and brain. Determined to still live my life, I was eager to get back to work.
I had planned a vacation before returning to work, as I am lucky that my parents have a place abroad in Spain. I had made plans with friends to visit a new hip venue in Spain on the Saturday night. I woke up on the Saturday morning feeling very vulnerable. Up until this point if I made plans, I would always attend no matter how I felt. This time, I had to cancel my plans. The next day I woke up and decided I would visit a large shopping center. Suddenly, I could barely place one foot in front of the other.
This was the start of a major relapse.
I flew back to Belfast for what was supposed to be a weekend break before returning to Scotland and getting back to work. But instead, I was admitted to hospital for 3 weeks, unable to walk and in a wheelchair. Never being the type of person to give up or think negatively, I was thinking of when I could return to sun and warmer climates.
I was transferred to a neurology rehabilitation hospital for another 3 weeks of intense physio. I immersed myself in exercise. I just wanted to walk unaided. I spoke with one of the MS consultants, asking for an open and honest reply: would or could I improve? Would I be able to walk unaided again? The response was “no,” however, I appreciated her honesty. Deep down, I knew I wouldn’t be able to manage without an aid. We are extremely lucky here in the UK to have the NHS. I appreciate all the scans, treatments and ongoing assistance. I could not afford to pay privately.
After my hospital stay, I was still not 100% on my feet, even with crutches. Through sheer determination, ongoing physio and training, I pushed myself to stand with my mobility aid.
I stayed with my parents to recover; however, I was desperate to get away and deal with how my life had changed so quickly. Returning to Scotland was not an option, as where I lived there was situated on top of a hill – MS clinics were nearly an hour’s travel. I had a lot of thinking to do, and I wanted to be alone for a few days.
I booked flights and traveled solo to my parents’ place in Spain. I rented my first mobility scooter for duration of my stay. My legs still were not able to function properly, and I realized they never would.
I was always fascinated about mobility scooters, as so many people use them day to day. With them, I tasted freedom and a real sense of independence. It did take time to get used to especially having to maneuver in unfamiliar small spaces.
Yes, I get people staring at me and have overhead some talking rather loudly, “he is very young to use a mobility scooter.” Anyone with MS will understand questions you get asked when using a mobility aid. No, I have not been in a fight or an accident, thanks I hope I get better soon, too, but I will never fully recover. MS is for life; I didn’t choose to have this disease. However, it will not stop me from living (OK, I no longer party until the small hours of the morning). I still manage to shop without my scooter, sometimes using crutches and try to travel when I can.
Every day is a special occasion, cherish your family and friends. This disease will not stop you from living your life, you just need to find a way to adapt. As I write this, I am staring out to the ocean. Unfortunately, the sea breeze will not let all my worries drift out to sea. But at no point shall I ever stop fighting MS. As time passes, my condition has progressed, but at the same time, I always find a way to continue keeping a positive outlook. I fall regularly, and it takes time to get up. I recently fell in my bedroom and had to be taken to the emergency department, requiring staples to the head. As soon as the staples were removed, I travelled by plane. No matter what, this diagnosis is scary – but it’s scarier if you don’t continue picking yourself up and doing activities you love.
It’s not easy, but you will manage and find your rhythm. Life is a rollercoaster do not be afraid to enjoy the ride.
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