This was about twenty years ago, in early 2003, when I was 31 years old. My arms and legs began to go numb. At the time, I was working in a sporting goods store, operating the cash register as the doors opened and closed. As a result, my hands and feet were very cold, even though I was wearing gloves and socks.
I bought some things you can find at camping stores to keep my hands and feet warm, so I put them in my gloves and socks. This went on for several months and then I talked to my mom about it, who talked to someone she knew. The next moment I went to the doctor.
I had to have an MRI pretty quickly and it showed that I had lesions on my brain and spine. And soon after that I was sent for a lumbar puncture. Of course, this also gave something. The next moment I walked up to one of the MS nurses who sat me down and told me it was MS.
At the time, I knew little about this condition. My impression of multiple sclerosis was that old people get it and end up in wheelchairs. That’s all I knew about it at that time. I didn’t know that young people could get multiple sclerosis.
I remember sitting in a small room when I was diagnosed. It wasn’t really a shock. I was just glad I knew what it was and that it wasn’t actually cancer. It was a relief that I finally understood what it was and that I could move on.
Nothing happened for a while because my father died just two weeks after my diagnosis. My body and mind put my MS on hold while I processed what had happened. But early the next year I had a major setback and that’s when it really hit me because I couldn’t walk properly.
I lost most of the feeling below my neck and felt paralyzed. I couldn’t eat or comb my hair. There were many things I couldn’t do. It all happened suddenly because one morning I woke up with a bandage on my chest and stomach. It felt like someone wrapped me in cling film and pulled it tight. I panicked, so I went back to the hospital and got a three-day course of steroids.
They put a packet in my arm and gave me the first dose, then came back over the next three days to give me more steroids. This just speeds up the healing process – the symptoms are still there, but you process them much faster. It was very scary because I couldn’t walk properly and I think it lasted for several months.
There wasn’t much support then. As my sister said, “I think I was in denial a lot. I just wanted to delve deeper into whatever it was. When I think back on it now, it all gets a little blurry. I just took each day as it came, taking pills for the pain, but when the pain subsided, I returned to normal work. And I loved my job. I had to take a few months off when I had relapses, some worse than others.
I have a new job at a travel agency and I don’t remember having any relapses or flare-ups recently. Time has passed. I broke up with my then partner of twenty years. It did not help. If anything, it was more of a relief.
In 2007, I had another relapse and moved to live with my mother. Where I live, I have to climb 24 steps to the front door. And I couldn’t get in or out of the house. I just lacked self-confidence.
I remember that I couldn’t sleep at all. My legs bothered me at night because I was very restless. I went through all this, but nothing much happened for ten years. It was only when I got a new job, which became very stressful, that everything changed.
Over the next three to four years I relapsed every year until I became housebound and it affected me – mentally, physically, everything.
In 2020 I started taking a new medication. As I experienced a relapse every year, my MS nurse referred me to Professor Helen Ford at Leeds University Hospitals NHS Trust, who introduced me to new treatments to see which I liked best. . Since I’m not particularly good at taking pills and remembering them, I decided to inject and now I inject something every two weeks. I haven’t had a relapse since 2020.
In 2021, Professor Ford asked me about the Ready for MS pilot program, to which I agreed. The NHS Trust has developed the Digital Resilience Program to help people with multiple sclerosis increase their belief in their ability to achieve goals, known as self-efficacy. It is based on acceptance and commitment therapy. It was developed with people with multiple sclerosis and tested in Leeds, London and Cardiff.
The study found that the program could lead to improvements in job instability in people with multiple sclerosis and associated psychological factors such as anxiety and self-efficacy. The program is currently being rolled out across ten sites as part of a wider study to see how it could be adopted by the NHS.
It helped me in three important areas. First: awareness and engagement of the senses to create a calm atmosphere. Second: acceptance, realizing that there are areas in my life that I cannot change, but which should not cause me increased stress and anxiety.
And third: resilience, to give yourself the strength to face seemingly insurmountable difficulties. I can honestly say that the program has changed my life for the better in many ways.
I take courses designed to engage all your senses so you can better perceive smells, sounds and touch as you walk. It was interesting because when the pandemic started and everyone started running, so did I, because I was put on leave for about a month. The program was difficult to get used to at first, but once I got the hang of it, I really enjoyed it.
I am now 51 years old and it has had a huge impact on my physical and mental health. I walk to work and home, which is about seven miles a day. I’m going to go for a longer walk this weekend. I’m just better at getting things done now. I still feel like I’m tearing my hair out sometimes, so I still struggle, but I think about things more clearly now. I think it’s more about acceptance than the ability to change something.
Next year I’m going on a desert trek across the Sahara in Morocco, which I can’t wait to do. Come November next year and I will have plenty of time to train. My goal is to walk 15 miles a day. At the moment it’s possible to do a big walk in one day, but I need time to recover from it, so doing big walks over multiple days will be a real challenge – it’s a five day hike. One hundred percent of my profits go to the Multiple Sclerosis charity in Calderdale, West Yorkshire.
I want to climb the huge sand dune we found. I’ve lost about a stone, so walking feels much better. Driving uphill is no longer as difficult as at the beginning of the journey. After trekking the Sahara, I would like to take on another challenge.
When my relapse was at its lowest point, I never in a million years thought I would reach this stage. I’m one of those people who prefers to take a bus or call a taxi rather than walk. Take the simple option.
Because MS is classified as an “invisible disease”, I still look good even at my worst, so people just think I’m not complaining about anything. It’s annoying. I don’t have a broken arm or a broken leg or anything like that. I don’t have a wheelchair, scooter or cane. This is the hardest part.
To support Jane on her charity walk, visit her Multiple Sclerosis Society page.
Source: I News
I’m Raymond Molina, a professional writer and journalist with over 5 years of experience in the media industry. I currently work for 24 News Reporters, where I write for the health section of their news website. In my role, I am responsible for researching and writing stories on current health trends and issues. My articles are often seen as thought-provoking pieces that provide valuable insight into the state of society’s wellbeing.