Being a Parent With MS
I was diagnosed with RRMS eight years ago. As my mobility has gradually declined over the years, and the “RR” has mysteriously morphed into “SP,” I've had to re-evaluate my parenting skills and take stock.
At times I've mourned in despair for the mother I wanted to be. I always imagined I'd be strong and energetic, going for long walks in the woods and coming home to bake cakes and messily decorate them with my kids. The reality is more like struggling from one task to another, praying to the 'God of MS' to be kind to me and keep fatigue at bay for a few more hours while I finish bathing the little one.
I do cope though, and some days I can hold my head up and be proud of my parenting skills. Other days, while I'm hollering at the top of my voice as its too far to hobble up the corridor, I wonder if I'm doing a good enough job.
It's the physical stuff I struggle with. My balance is bad so I use two sticks, which makes most household jobs virtually impossible. I can't carry things, so cooking and cleaning up can be a challenge.
My husband is amazing and works so hard for us all. He does the cooking, shopping, washing and most of the school runs. He has to work too, and we're lucky that he works part-time hours for a full-time salary, but this means there are times when I'm on my own with the children for whole weekends.
1. Plan Ahead
We get around this by planning our lives down to the last detail. We sit with our diaries and see when he has to work and what I'll need to do on my own as a result. I can then elicit help from other family members if necessary; my mum picks my son up from school to give me a break sometimes.
Another thing we have to plan in advance is meals. I have to cook sitting down and can't carry food to the table once it's made. My son helps a lot with this as he's seven now, and fairly sensible when he wants to be. The heat in the kitchen does bad things to my fatigue though, so we have to think about the meals I can manage.
We make huge batches of macaroni and cheese or tuna pasta bakes, which can be easily defrosted and put in the oven. I also have handy microwave bags that cook broccoli in two minutes! My husband also prepares fish with vegetables in parcels that cook in 20 minutes so its possible to cook nutritious meals as long as you plan in advance.
2. Be Creative
I also think of creative ways I can make the best out of a difficult situation. For example, I had to take my son to ninjutsu today, and it's a difficult walk near a busy road with loads of steps at the end. I had my daughter with me too, and I worry about the road when I'm struggling along at a snail's pace, concentrating on every step!
I drove instead, watched my son go in from the car, and then my daughter and I had a “car picnic” while we waited for his class to finish. She enjoyed her packed dinner and we watched the world go by, wondering where people were off to. This saved me so much energy and stress and we all got home safely an hour later.
3. Make Play Dates
Play dates are another wonderful invention. When I have the children on my own all weekend I feel like dropping to my knees in relief when someone agrees to come around with their children. I can then sit back without doing too much while they're occupied all afternoon.
4. Look After Yourself
I have to factor in rest, too. Often I bow out of going to the park or visiting relatives just so I can rest. I went on a fatigue management course recently, which emphasized the importance of cognitive rest as well as physical. This means putting my phone down and closing my eyes for an hour, and it's amazing what a restorative effect it has.
I eat really well too and have learned that MS and alcohol don't mix well, so I drink once a week these days. It sounds boring, but this lifestyle change has greatly improved my fatigue and mood, making me a better person to be around and a better parent.
5. Say Goodbye to Guilt
Perhaps the most important thing I've learned about parenting with MS is to not feel guilty. I struggled with this for years but now I realize there's so much I can do to be a good parent despite my MS, and my kids love me and need me regardless.
Sometimes I can't do everything, but as my daughter pointed out recently: “Mommy gives the best cuddles of all!” That about sums it up!