Emma, who lives with MS, writes about being mum to her two children, how she talks to them about her MS, and finding new ways to enjoy quality time together.
As Mother's Day approaches, I begin to prepare for what is a difficult day for me. I lost my mum 18 years ago, and there isn't a day goes by that I don't wish she was still here with us.
Seeing me being a mum to my two children - Josh who is 15 and Hannah almost 11, both of whom she never got to meet.
I suppose that losing my mum so young has made me appreciate you never know what's round the corner.
You need to make the most of the time you have with your family and friends. The current pandemic and lockdown has made us all appreciate that more than ever.
I suppose that losing my mum so young has made me appreciate that you never know what's round the corner.
Fighting the guilt
I have MS and it definitely poses its challenges. Frequently, I feel so tired that I can just about get through the working day and feed the family in an evening. Never mind having the energy left to spend some quality time with my children. All I really want is a nice warm, comfy bed to snuggle up in.
On days such as these, I have this overwhelming sense of guilt that I should be doing more with my children. What must they think of me always needing to go for a lie down in the middle of the day? What sort of example am I setting them? I feel there’s no way I would be winning a ‘super mum’ award any time soon.
Talking to my children about MS
Children can be incredibly susceptive to things going on around them. Those secretive conversations between grown-ups that happen. They know something is wrong. But without knowing what it is, they might start to make their own assumptions.
I explained to Josh and Hannah right from the very start what was happening to me and how having MS was just one of those things. Not something that could be fixed unfortunately, but could hopefully be managed.
I explained some of the symptoms that I might experience and why. And that, hopefully, there will be times when I will be ok.
This has made it much easier for me to explain when things aren't so good. It doesn't come as so much of a shock to them. They understand what I need to do to manage things. Whether that be going to bed to rest or doing some leg strengthening/stretching exercises, they are supportive.
Planning my time
Time is always one of those things that we all wish we had more of. But unfortunately there are restrictions. There are no more hours in the day and no more days in the week.
I find being disciplined with my time really important, to make sure I get the time I need to work, exercise and rest to be able to enjoy time with my family. My routine involves:
- exercising first thing before work when I have the most energy
- taking regular rest breaks during the working day (a lunchtime Nana nap isn’t unusual!)
- finishing work on time to give myself the time to unwind as I cook dinner
An unrested Emma is not a joy to be around - my kids would much rather go off and do their own thing!
Bad days doesn’t mean a bad mum
Despite having all the sleep in the world (or so it seems), it often doesn’t bring my energy back. This means I have had to find other ways to spend time with my children. Well, my daughter more so as teenage boys tend to spend more time in their bedrooms!
Quality time in these situations can include cooking together, with me perched on a high chair, observing and on oven duty. Or snuggling up on the sofa to watch a good movie together with a big bag of popcorn to share.
And it can just be showing an interest in one of their latest trends, such as taking funny photos of each other with different filters - or watching them play on one of their favourite computer games. And asking all those silly questions as I have absolutely no idea what's going on!
Kids just love having your full attention and knowing you’re in the room. That means phones down and brains tuned into the now. My MS luckily hasn't taken the ability to do that away from me. It's just every now and then I need reminding that it’s important.
MS might cause limitations, but I have found new ways to continue to be a super mum. Creating those little memories that my kids will remember fondly for years to come.
So a very Happy Mother's Day to all those super mums who do their very best each and every day to look after their families, while battling with this debilitating condition. You are super and you know it!