My daughter is 10 years old and has never known me without MS. I really don’t think she believes me when I say that I used to be a competitive swimmer in my teens.
Getting diagnosed and problems with walking
I was diagnosed with MS a couple of years before having my daughter but relapsed quite badly after giving birth.
One of my main problems is walking. I can’t walk unaided and I use a wheelchair or mobility scooter when out and about. I don’t know how my daughter feels about this because she just accepts it. If she is bothered by it, she never tells me.
But I know she gets anxiety when she’s away from me. I think she worries about me falling and hurting myself. Of course, there’s no guarantee that this won’t happen, no matter how much I reassure her.
Everything has to be planned
Plan, plan, plan. This is the way I manage, and probably how any mum manages.
I plan meals I can manage to cook. But I do get a little jealous when people tell me their husband is at home cooking a roast ready for their arrival home. I don’t have the luxury of having someone cook for us. The buck stops with me.
I try not to feel guilty. I just try to feel good about what I still can do.
Cooking is exhausting for me so I try and cook easy food that I know I can manage. Chicken dippers and potato waffles are a great easy oven meal that I can cook when I’m having ‘one of those days’.
I have to plan where we go and what we do. Spontaneity is not a word associated with MS. I need to think about parking, accessibility to buildings and what the weather is doing - rain is not my friend!
MS and mum guilt
Another huge problem is mum guilt. I’m sure this isn’t confined to people with MS, but I know we tend to feel it more. I do think this guilt is something that I get from being a lone parent as well as a disabled mum. I often have to cancel plans or say no to my daughter because I physically can’t do what she wants.
I try my best to manage my fatigue so I’m able to be a mum and take her to clubs and out for day trips in the holidays. But this isn’t always possible, as MS doesn’t always work with you.
If I can’t do something, I try not to feel guilty. I just try to feel good about what I still can do. I might not be a ‘normal’ mum who can walk and dance, but I make sure I do what I can to the best of my capabilities.
My daughter is my best friend and I know she loves me for me.