By Penelope Conway
Summer used to be my favorite time of year. A time to spend in the sun, taking a trip to the beach, going fishing at the local fishing hole, spending time swimming at the lake, enjoying concerts in the park, and so many other activities that just pop up and sound fun to do. For me, those things are no longer something I look forward to being a part of. My summer has become one more of staying inside with the air conditioner blasting and me hoping for cool days to come soon.
My multiple sclerosis body has a hard time dealing with the summer heat and humidity as much as with the winter freezing temps. My muscles tend to grow extraordinarily weak in the heat and seize up in the cold. I have always wished I could live somewhere where the temperature was stable all year around. I haven’t found that place yet but there’s always a possibility of some uncharted island somewhere in the world that has that kind of perfection. If I ever find it, I’m moving!
So far this year the heat outside has kicked my butt. I have tried all the normal tricks to remain cool and keep my core body temperature down using ice vests, carrying ice packs around and even wearing breathable clothing, but no matter what I do my body has continued to grow weaker as the summer progresses.
It’s crazy getting exhausted just going to the mailbox. That short of a trip and I’m ready for a nap. It can actually get quite frustrating.
Sometimes I will have my heart set on going somewhere then not have the energy to go and have to cancel plans. Or I have something that needs to get done but it doesn’t get done for days and days and days just because I can’t gather the needed strength to do it. If I could, I would hire a maid to clean for me, a cook to make my meals and a chauffeur to take me places. Now that would be the life. Include getting rid of MS in the mix and that would be my dream come true.
But as it is right now, I’m the one that has to do everything. It’s up to me to take care of the house, do the laundry, prepare my meals, bathe, vacuum, pay the bills, make the bed, put gas in the van, clean up my messes, and live with MS.
So, what do I do in the summer heat when things need to get done and my body refuses to cooperate? I do what I can and leave the rest for another day. I have had to learn to be okay with not getting everything done that I want or even need done. Taking care of me is way more important these days than taking out the trash or getting the mail. My well-being is more important than attending a ballgame in 100-degree weather and my health is of greater importance than going to a meeting when I’m having trouble lifting my arms.
Be good to yourself. Take care of you. No one else is going to do it for you. It’s okay to cancel plans, veg on the couch, sleep late, and more importantly to need help. There are several people in my life that I know would do anything for me if I asked. I try my best to not take advantage of their good nature and use the calling card sparingly. For me, I want to do as much as I can on my own while I can.
I have never met an MSer that wasn’t a strong and powerful fighter even on their weakest days. We push through some of the toughest battles. Things that other people never see or even know about because we simply keep going. We MSers are an amazing example of strength, persistence and determination. I’m cheering you on today and know that you have what it takes to get through the day today. Hang in there and remember that taking care of yourself is not being selfish. That’s called being human. Take a break if you need to. It’s really okay.
I have a hard time with not being able to do what I used to do. I just walked out to my mailbox also and by the time that I got back in the house, I felt like I was about to vomit. It really sucks that I have a 10 year old son and I feel so puny because I cannot stay out and do things with him.. That is what upsets me more than anything. I fight through how I physically feel, but it bothers me because I don’t know what he thinks about when I cannot do things with him. That’s the worst battle that I face everyday.
I,m always knackered , dont want to do anything but lay in bed, I’m happy there (sad) in bed typing this wish i had a more interesting ceiling lol .