My Mum's got MS
"My Mum's got MS."
Hearing my five year old say these words to his Granny was one of the darkest moments of my diagnosis.
He really hadn’t a clue what it was, or what it entailed, only that it was making his Mum extremely poorly and unable to care for him.
She was unable to make his favourite lunchboxes and meals or take him to school.
My diagnosis came after a six month long, severe relapse. There were no warning signs that anything was wrong prior to this.
Waking up one day with ferocious vertigo, unable to walk within weeks proved a shocking and terrifying experience for us all.
We spoke to both the children (aged five and seven at the time) explaining that I was unwell and had a virus (which is what the GP first diagnosed). They seemed to grudgingly accept this, but with overwhelming unhappiness.
When the consultant first mentioned MS, we gently tried to explain that the doctor may have an idea what was wrong, and that I may have to stay in a wheelchair (which I first thought, due to a lack of education on the matter).
They seemed relieved at this idea initially, and said that as long as I wasn't going to die, they didn’t care about the wheelchair.
As time wore on, however, their behaviour started to decline. We had problems settling our youngest at school (which was always an issue, but seemed to be escalating rapidly).
Eventually, I plucked up the courage to look on the MS Society’s brilliant website. This led me to the forum, which offered the most invaluable help for a ‘newbie’.
A forum member who’d experienced similar issues with their children suggested contacting the school nurse to try a little counselling for the boys. The school was fantastic, offering the children ‘time out’ whenever they needed it.
They could ring home to check on me, which seemed our youngest son’s concern, as he had seen me fall quite often. Sometimes, they just needed a few minutes with a member of staff to share their anxieties.
The school nurse came for a home visit, gained all the background information necessary, spoke to us as a family, then offered to speak exclusively to the boys.
At this point they were quite nervous, and just listened to her ‘child friendly’ explanation of MS. She told them to write down any worries, so they could be discussed at the next visit.
The nurse returned, armed with literature and behaviour certificates that the children could ‘earn’ when doing a helpful task. She also brought them a ‘Worry Book’, printed with their own names and photos. They used these to write down their thoughts, either before bed or whenever they needed.
They were encouraged to show the books to us, the nurse, or a staff member at school, if it was something they didn’t want to worry us with.
Causing concern seemed a big problem for our eldest. He felt the need to bottle things up, to prevent adding to our worries. Little did he know how much that exacerbated our anxiety.
The nurse also brought along two fantastic publications by the MS Society, which were called My Mum’s Got MS (about a boy who wanted a puppy), and also My Dad’s Got MS (which was sporty and football orientated – perfect at the time for them!).
These books went into an understandable depth about how the illness attacks the Myelin and the consequent symptoms.
They also highlighted scenarios that I would imagine affect all, or most young families dealing with MS. They were a real blessing to us, as the children seemed to benefit hugely from them.
With continued help over the years from the school nurse services, our boys seem to have a comfortable understanding of MS. As much as they still worry, they hopefully know that they have a support network to turn to if needed.
My Mum's Got MS and My Dad's Got MS are no longer available, but the MS Society has a number of other resources for parents and their children:
- Our Dad makes the best boats
- Our Mum makes the best cakes
- Annie and Dan talk about MS
- MS explained for teenagers
There is also the Young MS website for kids and teenagers