Back in February, I did a post about Parenting with a Disability. This was about disability in general, not MS specific. Today, I will be revisiting this post and expand on some of its ideas while focusing on my personal experience of parenting with MS.
This isn’t meant to be taken as advice or “what should be done,” but an insight into how someone deals with their MS and what works for them. If you are a parent with MS or newly diagnosed, remember to be gentle with yourself and don’t compare yourself to others. You are doing the best you can and what works for you and that’s the most important thing.
Parenting through the Fog
Two of the biggest issues I face with my MS is fatigue and mental fog.
Every day I wake up feeling like I did not get a full night’s sleep, even if I did. The best way to describe it: I feel like I am walking around in a thick, goopy mud that makes me work extra hard to get through each step. The idea of going up and down the stairs to grab one item is extremely overwhelming on my worse days.
Says the person who gets up 3 days a week to run a couple of miles and just completed a half marathon yesterday.
But that is the issue with MS.
There are days when I have enough energy to do something strenuous and then incapable of doing anything for the rest of the day. Then there are other days where I do practically nothing and its still near impossible to get through the day without crawling back into bed.
And still, other days where I do something strenuous and I am able to do anything and everything all day with little-to-no consequences.
I find the inconsistency extremely frustrating. I am a person who loves to know what to expect and when to expect it. MS forces me to be patient with myself and I don’t like that.
Additionally, I struggle to remember things. The mental fog is infuriating because I can be looking at an object and pointing at it and be completely incapable of getting my mind to recall the object’s name. When I have these moments, I have to slow myself down and try to do what I can to work through the recall in a slower manner.
I know this day is coming and I am trying to prepare myself for when it happens, but Jai is going to mimic my ritual for recall and it’s going to break my heart when it happens. I can’t fault him because he will be doing it from a place of love and innocence, but it’s going to hurt to see a reflection of what I have to do to recall something through the mental fog.
Limitations in Parenting
It is very clear that I have some limitations with my parenting. There are days where I struggle to keep up with Jai and Ash has to help me out or I have a slower day where we sit in and I watch Jai as he plays a game by himself.
I really wish I could be more interactive in my time with him all the time, but I cannot. I wish I could remember certain things that Jai does, but I cannot. I feel like I am working with a severe handicap (and to a certain extent, I am). Some days I feel like if I will it hard enough I can shake myself into normalcy. I am just not trying hard enough to be more normal.
But that’s not how that works. Which is infuriating for a perfectionist like me.
I recognize these limitations and I try to do what I can with them. Wednesday will talk about learning to be at peace with my imperfections and Friday will be about how I’ve had to adapt my parenting after making peace with myself.
What sort of limitations have you found MS has brought to your parenting? Comment with your experiences below.
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