4 minutes, 10 seconds
I was diagnosed a year before falling pregnant with my little man, who is now a pre-schooler. When he was born, I was told to “savour every moment as they grow up so fast”. The similarity of being a Mother and having MS is to be prepared. To do this, I wanted to understand how to look after myself and a little one at the same time. I am no expert on mummy or MS stuff, but this is what I have learnt so far on coping:
Cry if you want to
If you want to cry, have a pity party, it’s normal. Just do it! Probably every parent has been there and most likely, every person living with MS. Don’t put pressure on yourself!
Life as an MS Mummy is unpredictable, the last thing you probably want is having a regimented life especially as nights are long and you are zapped of energy. A routine pays off. Mine is bathing my little man before bed, a signal for bedtime. All night feeding, whatever the time happened in his room, so my little man got used to his bedroom even when he was sleeping in our room. The transition from our room to his room was probably easier because of familiarity. Trying to stick to the same time each day helps. As a younger child, we still have that routine but now includes story time.
Reserve your energy
You want to work sleeping out, but every little person is different. My advice is do whatever works. We tried story reading at an early age and he is still a bookworm! In the early days to sooth my little man, we placed a tablet under the crib, which played nursery rhymes. My little man hated day sleeping in his cot, so he slept in the buggy which helped conserve my energy and now he sleeps on a toddler bed or sofa. I rest when my little man sleeps and when possible, organise family to take little man so I can rest.
Downstairs, there are always enough spare clothes, pants, vests and socks (or baby things when he was younger) medicines and food. My kitchen blackboard helps with reminders to help my brain fog.
Me, me, me!
It took me several months to realise after having my little man that I forgot about me. So, whether you get a haircut, buying something new or getting rest, it all helps on feeling better about yourself.
Rosalind Dorlen said, “handling chronic illness is about learning to live in balance”. I remind myself of this. Good days, you act like a super hero and on bad days, you feel like a rubbish parent for not having any energy to do anything. I still have the same challenges as any parent but MS puts another spin on things. As I said in my first tip, do not put the pressure on.
© Genzyme Europe B.V.
Date of approval: May 2018
Discover your MS Truth and Dare yourself to do things differently with the Truth or Dare card game.