I was in the prime of my life with two amazing young daughters, working all the hours I was able to under the sun. Then, one Monday morning after working a weekend shift, everything changed.
I went from feeling like I was doing the best I could in life to facing the overwhelming emotional turmoil of a devastating diagnosis of multiple sclerosis. Struggling with many relapses and having to take time off work was incredibly difficult, but I was determined to overcome the issues that tried to stop me.
My diagnosis
The first issue I had regarding the illness was waking up and having a numb sensation in my right hand, which quickly progressed up to my shoulder before the day was out. The next day it grew more severe, moving up over the right side of my face and head. It was a strange sensation that I’ve never felt before, a mix of numbness and tingling, paired with a slight loss of strength that was just hard to fathom.
After a brief hospital visit, I was told it was a pulled muscle in my shoulder and was sent away with physiotherapy. But months of physio, more ‘relapses’ (which we didn’t know were relapses at the beginning) which entailed vertigo, cognitive issues which came along with the extreme fatigue, weakness in my right leg, optic neuritis and the main issue… emptying of the bladder and bowel. Extensive tests finally brought the diagnosis of Multiple Sclerosis (MS).
What is Multiple Sclerosis?
In short, Multiple Sclerosis is an autoimmune condition where the body’s immune system attacks the nerves in the brain and spinal cord. Think of it like the insulation wearing away on an electrical wire; when that coating is damaged, the messages trying to get from your brain to your body get scrambled, delayed, or blocked entirely. It’s what causes the unpredictable ‘relapses’ or flare-ups that can completely disrupt daily life.
My experience of MS
Having to adapt to a different way of life and having to use a walking stick came easy to me in all honesty, it helped with my balance and the weakness in my right leg. The hardest relapse to comprehend was dealing with bladder and bowel issues. Having to self-catheterise and use an irrigation machine just to help live a normal day-to-day life was hard at first, but I managed to cope with it. Eventually, however, the irrigation machine stopped working for me as the necessary muscle function simply wasn’t there anymore.
This is the part where I started to hear the word stoma. Before that conversation, I hadn’t really known anything about it, but it seemed to be my only remaining option. The more I was looking into it and realising it will give me the freedom back that I needed was actually quite exciting.
What helped me on my journey
Four years on from my surgery, and I am absolutely over the moon that this was the outcome. Having a stoma hasn’t only made me more comfortable day-to-day, but it has actively allowed me to get back into work doing what I love. I no longer have to live in fear or worry about the constant pain and anguish of needing to find a toilet or being in pain for several days due to the damage it was doing when I needed to go, every single time.
Don’t let hearing that you may need a life-changing operation get to you. Take a step back, assess the situation, and try to come to the realisation that what is going to happen will actually make your life so much better.
Talking to your nearest and dearest will be a massive help. Having a strong support network around me at the time made the entire transition so much easier for me, and for those people, I will forever be grateful.
Don’t read into the horror stories you may have heard of that people have said has happened to a friends aunties cat, everybody adapts differently to every situation. Do healthy research, from people that have a stoma themselves or even stoma support groups.
