You can’t control multiple sclerosis
Living with multiple sclerosis isn’t as easy as some people make it seem. It’s not like I can will my body into behaving or talk my muscles into working. Mine seem to have revolted all on their own. I don’t need anyone to pull me down with their words. MS is doing a pretty good job of that on its own.
I have days when I find myself dealing with physical symptoms like tremors, pain, weakness, numbness, vision problems, and muscle spasms. Enough to cause me difficulties but not enough to stop me from continuing on in my day. Then there are times when everything becomes so intense, when the pain and weakness grows so deep, that it bleeds over into every part of my life as it tries to get its grubby little hands on things like my thoughts and emotions.
One thing I have learned over time is that MS is not a disease you can control or keep to yourself. We try though…don’t we?! I know I do. I try to keep the effects of MS neatly contained in its own little space hoping to shield myself and those around me from its impending destruction, but it seems the more I try to contain it, the more it spills out. It’s kind of like trying to rake the leaves in my yard into a pile on a windy day. What a futile task. No matter how hard I try, they just won’t stay where I put them.
Regardless of what anyone thinks, we need people, especially when living with a chronic illness and even more so at this time of year. It’s a time when the weather is unforgiving. It has this sneaky way of causing our nerves and muscles to go a bit haywire as the hot temperatures creep into our lives limiting what we can accomplish on our own. Humidity is the worst.
As the summer progresses more and more cookouts take place. It’s amazing the things we have to consider when receiving an invitation to an outing. Is the location accessible? Will there be adequate air conditioning to keep me cool? Will my body play nice? Will I be able to manage the traffic? Will my finances be stretched too thin, above and beyond any past due medical bills? Will people understand my decision to stay at home or that I had to cancel plans last minute? Will they even invite me in the first place?
Real friends get it though. I was once told, “You can count your true friends on one hand and sometimes on one finger.” How true is that?
I know it’s not always easy to do, but be determined to fill the days ahead with the love of a few close friends. It really does brighten the dreaded summer days. If you can’t get out, invite someone over for a special movie night complete with pizza and popcorn or even have a Zoom meeting with people you haven’t seen in a while. Sometimes something as simple as a text message back and forth with someone you haven’t heard from in a long time can give you a smile that lasts for days.
From one friend to another: do your best to find joy in the steamy hot days and always remember just how absolutely, positively, incredibly amazing you are. I sure happen to think so.
1. Simplify your life.
Amazing words and so accurate. Friends? People that care and understand! Very few remain and I hope Karma hits them
So true… unfortunately no one gets it until they get it ….
Me too! Karma hits them right upside the head. 🙂
Lovely words and scarily close to how my life is. But I have good friends, a great family network and an amazing partner that puts up with me. She deserves a medal!!
So glad you have people to get your back. That’s so important! xoxo
Yes as others have said scarily And accurately description of my life. My hubby is my rock in this fight! Thanks for your continued positive vibes my friend