Living with MS is difficult. Not only do you have to deal with the challenges of everyday life, but you have to deal with these challenges while living with MS. In this article our four dedicated advisors share difficult periods in their lives and talk about how they overcame the adversity that they were presented with.
The start of your MS journey may not be easy, but it is a chance for a fresh start. I started to see it as if I was moving into an empty apartment. There are lots of opportunities to make yourself comfortable and feel at home with the situation. Every room needs paint, furniture, and other miscellaneous things to make life a little more comfortable. There is a room for information and decision making, another room is for the hobbies and another is for healthy living. Thinking like this helped me to think clearly about how I wanted my life with MS to be, and what I was going to do to facilitate that.
Losing three close family members - two of them unexpectedly - within the space of 18 months has been heart breaking and with the addition of a pandemic, it has felt almost insurmountable at times. Funerals during a pandemic are utterly soul destroying and the loss of ‘normal’ wakes and mourning has been cruel and isolating. Strict government guidelines have divided families when we have needed each other the most.
MS and stress are not a great combination and it was therefore understandable that after each death, I experienced a flare-up of symptoms. Just when I had to be strong, I felt weakened and diminished by the intensity of fatigue, neuropathic pain and muddled thoughts that MS brings.
Thankfully, my family and friends rallied around, whether in person - rules permitting - or at the end of a Zoom call or the telephone. After contacting my MS team, I was urged to attend for an emergency appointment and thoroughly assessed. Ultimately, my symptoms were flare-ups and not a relapse. Grief is grief, MS or not, it’s just that MS can make things that little bit harder.
The hardest thing I believe I have had to do is accept the fact that I need, and I am going to need for a wheelchair to move around.
I was never a huge sports person, although I used to walk quite a lot. But I guess you don’t miss something until you no longer have it. You realise that it is something you took for granted.
Even though I have been able to adapt, there are still some things I have had to accept that I can no longer do. I’m aware that, even though not everyone with MS experiences this, it is something I need to accept and learn to live with instead of fight against it.
Adapting to different level of ability is what I need to do to keep my life as normal as possible.
It can be hard having to adapt to a walking aid. But keeping in mind that it makes my life easier is enough to make help me come to peace with it. When I started using a wheelchair, I was almost at the end of my first year as a member of an amateur theatre group. It was June and the heat would not let me even stand. Even though it was hard to get used to it at first, it was a necessity in order to do what I really wanted to do. I did my part in a wheelchair, which meant some adapting and difficulty for me. But it made it easier for me because I could concentrate on what I was doing, instead of worrying about the fact that I could trip on something or fall.
MS and adversity has gone hand in hand for me since the beginning of my first symptoms. In my case, my MS started with numbness in my right leg and bladder dysfunction. At the time I thought it could be related to a urinary tract infection or an intervertebral disc hernia due to 11 years of karting practice. It was a problem that I kept hidden to those around me, particularly my wife. I didn’t want to disturb her or the rest of my family with these symptoms.
However, the time arrived when I couldn’t hide it anymore. My right leg was getting worse and everyone started to see my difficulty when I walked. Besides that, the number of restroom visits increased rapidly, and my mood felt down.
Fortunately, and from a friend’s suggestion, I decided to have a consultation with a neurologist, who sent me for an MRI scan to see what the problem was. The result was MS due to multiple lesions around my brain and spine.
As devastating as the news was, I took comfort in what my neurologist told me: “One day we all have to die. I can assure you that in your case you’ll not die because MS, you’ll die with MS”. This statement from my neurologist made me a different person and helped me to start focusing on my priorities. Undoubtably, this mantra has helped me to overcome adversity whilst living with MS.