I may earn money or products from the companies mentioned in this post.
So I’ve had MS for 7 years. I’ve been a mom for 4 years. My kids are my world, just like every parent out there. But it’s getting hard and I know it’s just a phase. I know once my kids understand more about this disease and can process this on their own, these feelings will pass. However, it’s so damn hard in the moment.
Backstory; I’ve been off medication since June because my disease is processing and my old meds weren’t working anymore. You can read more about that here, https://downthemamarabbithole.com/welp-this-blows/(opens in a new tab) However, I’ve had issues with my insurance and the cost of the new medication. Also scheduling the new meds since I have to have them via infusions. But since it’s been so long without meds (and my last mri showed active lesions without symptoms) my Neuro suggested a 3 day course of steroids to hold me over.
So I’m sitting here at the hospital doing those steroids via infusion. It’s the second day and it’s f*cking hard. I missed picking up my kids from school yesterday. I missed them waking up this morning. I missed our morning snuggles. And missing these moments makes me hate this disease so freaking much.
My kids are at the age where they can start to understand some of this. They ask why mommy has to go to the dr so much. Or why I get so many pokes (needles). But the one that hurt the most was when my daughter asked me “if mommas feet hurt too much to play with her.” Cue all the tears. It just pulls so hard on my heart strings. I never wanted them to have to feel this. I never wanted them to have to feel like their mom can’t play with them.
This is a new part of this journey for me and man does it hurt. I knew these days would come when I got pregnant. And I knew I’d have to someday explain this to them. But I didn’t expect it to be this hard and hurt this much. I always knew this day and time would come, but I thought it would be so much farther away. I thought my MS was under control and I would be able to tell them all about this in a more positive way. I’ve cried his this entire session. And the entire time I’ve been writing this post on my phone. The emotions from this process, this disease, and these damn meds suck so bad. I know this is just a season and I will get through it. I know kids will get through it. But it doesn’t make any of it easier.
* I wrote this yesterday, October 19th, 2021