My name is Simone and I live with my husband, Nikoma who has multiple sclerosis. We first many years ago when our families attended the same church, so we had a lot of mutual friends and had known each other for a long time before anything developed romantically.
Nikoma worked as a sound engineer and was on tour for work when he first developed symptoms in 2016, however, he didn’t tell me about what was happening initially. I travelled to America to meet him during a break in the tour and it was then he told me that he’d experienced some sight loss in one of his eyes but had seen a doctor and things were slowly getting better. Of course, I was very concerned about this, and I asked him why he hadn’t told me before. He said that he didn’t want to worry me. To be honest, I tried to push it to the back of my mind and just thought that it was an isolated incident and that he would be okay.
Over the next couple of years, he began experiencing other symptoms and needed numerous visits to the GP and hospital but even then, I tried to remain positive and hoped it wasn’t anything serious.
It wasn’t until two years later, in 2018, that he was diagnosed with MS. At the time of the diagnosis, I was pregnant with our daughter. I remember both of us sitting in the hospital and when the consultant said it was MS, I got really hot and said that I needed to leave the room. When I got up from the chair, I became nauseous and began throwing up in the sink in the doctor’s office. The consultant called a nurse who got me to lie down. I had all these thoughts racing through my mind: How did he get it? Will he die? Will our children have it? What is it??
From there I went into denial, I wouldn’t really talk about what was happening and I certainly didn’t tell anyone about the diagnosis. My way of coping was to ignore it and just take each day as it came.
After a long time of grieving, strain and bitterness on both sides, I learned that in order to be the best caregiver to Nik and the best mum to our daughter, I also had to take care of myself.
Since Nik’s diagnosis, life has changed dramatically. He is now unable to do a lot of the things he used to do. His balance issues and fatigue mean we must think carefully when planning family trips or even small things like visiting the supermarket. It’s also difficult as he can’t do as much as he would like with our daughter. Running around with her and other activities which are easy for others, are too physically demanding for Nikoma.
Due to vision issues, Nikoma no longer drives so I now do all the driving. I take care of all the day to day activities at home and take lead responsibility with bills and household finances due to Nikoma’s brain fog and cognitive issues.
I never want it to seem as though Nikoma is a burden, however living and caring for someone with MS is really difficult.
It's tough being a caregiver and although you are not the person with the illness, you are certainly living alongside it and being affected.
Being a caregiver takes its toll on every aspect of your life - mentally, financially, socially and so on. One of the hardest things about being a carer is that you love the person that you are caring for, but you also feel as though you are grieving for the person they once were and the life you once had.
It's been a long journey of self-discovery but along the way,
I realised that there were so many other unpaid family caregivers out there who were juggling employment, parenthood and everything else that life brings. They were suffering and feeling like they were the only person going through this experience - and so began my mission to help!
I am now a qualified coach and have recently rebranded my coaching business and now coach and support other family caregivers, more information can be found at www.coachsimonebell.com. I have done this because I want to be the support that I was unable to find for myself and using the skills gained through my lived experiences, I believe I am able to do just that.
Anyone that contacts me and quotes “MS Trust” will be given a complimentary coaching session.
Simone Bell
