Having a chronic illness sucks. Being a parent with a chronic illness can suck more on certain days than others. It’s a different kind of suck, with a certain layer of guilt that only those with a chronic illness can understand. We are entering into a time of year that can be particularly difficult for those of us with Multiple Sclerosis: summer. I am going to share my survival tips for summer parenting with MS.
Guilt & Multiple Sclerosis
I want to touch on the guilt for a minute, because it is so hard to overcome. Every summer I have to take a moment and pep talk myself through the guilt. The guilt of being a parent with Multiple Sclerosis and that there are some days when Mommy can’t be as fun as she wants to be. The guilt is such bullshit (pardon my candor). Our kids will love us anyway. That doesn’t stop us from going down the “I wish I was a ‘normal’ parent” hole now does it?
The thing I finally realized this year, is that while Wildchild has an immensely hard time being patient or even understanding my limitations, he still thinks I am amazing. Plus, he is just so happy to even sit in the shade on a hot day. It doesn’t have to be crazy running around the backyard all day. Although, I did do a couple of cartwheels just to keep the fun Mom status going a bit lol.
We have a pretty exciting summer planned out, which you can read about here. Since we are still on Baby Step 2 we have been trying to plan things a bit in advance so that we can keep the costs low, and within our budget.
The plans that we have where I have to keep my diagnosis in mind would probably be our hiking trips. Since most of my symptoms seems to be centered around my legs and my vision, there are a few extra precautions I keep in mind. The biggest thing I have to watch out for is heat. Going hiking in the middle of a 90 degree day is probably not the wisest decision for most people, but it can be a huge pain for those of us with Multiple Sclerosis.
Personally, I have a tendency to get dizzy and my legs tingle. My feet also seem to have some weird issues as well. This makes navigating uneven terrain slightly risky. When we go hiking, we make sure to start when it’s relatively cool. Like any good hiker, we carry water with us. If it’s gonna be a warm day we carry a bit extra for me. Soaking bandanas in cool water and tying them around my neck help as well.
I haven’t been able to bring myself to try it out yet, but I do have a cooling vest system that I was able to get from the Multiple Sclerosis Association of America here. To me, it’s almost like admitting defeat to myself. Which is just so dumb, but I have it on hand if things get too hot. So far at home, I haven’t had to bring it out. Maybe I will finally try it this summer for a hike.
Since I have been dealing with this pain in the butt disease for a few years now, I have a few tricks up my sleeve for dealing with the heat. Lucky for me and Wildchild, a few of these can be made into family fun:
- Running through the sprinkler, or honestly just standing in it lol.
- Pools. I usually pull up a lawn chair and soak my feet while he plays.
- Water balloon or squirt gun fight.
- Popsicles and/or Ice Cream. Seriously, what kid doesn’t love these?
- Picnic in the shade, with lots of cool and hydrating foods.
- Living room picnic near the air conditioner.
- Nerf gun target practice in the basement.
- Popcorn movie time in the house.
One of the biggest things that has been helpful to me over the years is a long, cool shower. Something about just letting that cool water rush over me helps my symptoms tremendously. I usually try to take a quick, cool shower each night of the summer during the week and reserve the longer ones for the weekend. Just because we have so much going and I don’t want to wait any longer to start bedtime lol.
Do you have a chronic illness? What are some of the things you do to balance being a parent with being sick? If you are affected a bit more during the heat of summer, what are some things you do to survive? I would love to hear from you!