Just three months after I met my future husband, I was diagnosed with Multiple Sclerosis (MS). Shocked and devastated, I had no idea what having MS would mean for my life. My mind instantly went to needing a cane by 40, a wheelchair by 45-50 and, worst of all, having a body that wouldn’t let me become a mum.
I met Matt at a chicken shop where I was buying lunch. I recognised him straight away as a guy I went to primary school with 27 years earlier. A text from him 90 minutes later developed into a slow but steady courtship and one that would be tested sooner than either of us realised.
At first I ignored my symptoms. Looking back it seems ridiculous that I waited six weeks before seeing a doctor, but I honestly didn’t think it was that big a deal. Given my inclination to get worked up about things, I thought that perhaps it was my mind more than the actual situation. The symptoms were never consistent. First I felt an intense vibration. I would scratch myself on the arm and feel a vibration right throughout my body. Following this I experienced numbness and weakness in my legs.
Some days I would be okay; that is I could walk normally and feel only heaviness and pain in some parts of my legs. Other days I would be crawling on the ground and unable to walk 10 metres. It wasn’t until I was walking down the street one day in 2007 that I realised I couldn’t feel my ankles or my feet and I looked down to see that my right foot had given way all together. I rang my dad and then my GP who got me an appointment with a leading neurologist the next day. Three weeks, two MRI’s, multiple blood tests and a lumbar puncher later I was diagnosed with Relapsing Remitting MS. Apparently I’d had it since 2005.
While getting tested, MS wasn’t even mentioned as a possibility to me, neither by my GP or my neurologist. Matt had been away for work during that time and I was at the airport picking him up when I said to him half jokingly, ‘Can you imagine if it is MS? My life would be ruined’. I’ll never forget his response ‘Mel, That is ridiculous. You can live with MS. It’s not ideal, I know, but a friend of mine has a friend who is managing her MS well’. I also remember exactly what I thought at the time, ‘Right, that’s easy for you to say, you’re not the one who can’t walk, who is a 34-year-old woman and who wants to have your children!’. Looking back. my greatest fear at the time was that he would leave me and that I would have to go through this alone. That was Sunday. The following Wednesday I got the diagnosis. That night I said to him, ‘If you want to go it’s okay, I understand but go now, because I have to get my shit together to MC my sister’s wedding next week and I’ve got a lot to work through’. He told me that he was there for Melinda, not MS and he’d like to stay. I said okay.
We got married in September 2009 and had the son I feared I’d be incapable of having – Harrison – in August 2010. For me there were many factors to consider when having a child. The choices I made were as much for my welfare as they were for my son. The decision to have an elective C-section to reduce trauma during and post childbirth was an easy choice to make as was the decision to not breastfeed so I could go straight back onto my MS treatment.
Do I miss having never tried breastfeeding? No. Do I feel I lost a closeness and connection to my son by not breastfeeding? No. Do I feel Harry’s health has been jeopardised because he wasn’t breastfeed? No. Did I feel pressure from society about not breastfeeding? Only from the media. I can honestly say that the birth and the next few months were the most beautiful days of my life and the happiest.
The decision to not have any more children now that Matt and I are 40 has been a harder one. I always thought I’d have one child but six months after Harry was born the feelings of wanting a sibling for him came on strong and in some ways are still with me now. It’s a tough one, because I feel in my gut that one child is right for our family given the risks of a severe MS attack post-natal and the added stress and pressure of another child on my mind and body. As a family, we will certainly look into fostering when Harry is older. Do I think Harry will wish he had a sibling? Yes. But the 12 cousins he has within a 10km radius of our home and our huge network of friends and family will probably mean that these thoughts don’t make him sad and lonely. He has two healthy parents who adore him and who adore each other. That’s got to stand for something.
What you need to know about MS
- MS affects everyone differently; no two people are the same;
- There are physiological issues related to MS because the fear of never knowing what might happen to your body is always there and constantly plays on your mind and your ability to plan and manage for the future;
- MS affects 1 in 5 more women than men;
- The treatments available for MS today are vast and highly effective so for many people living with MS there is high hope for a future without disability.
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Melinda has started a NFP storytelling community about living with an invisible illness. Join the My Invisible Life Facebook community here or visit the website at My Invisible Life to read a growing range of stories about all types of invisible illness.