For me, most of my MS symptoms are relatively invisible, especially since I was treated for CCSVI and my visible symptoms disappeared. I definitely felt like I had 10 years prior. However, at that time I had already been diagnosed for fifteen years, with symptoms dating back at least 3-4 years before that. So since the symptoms they could see were gone, they assumed I was miraculously cured! And although some days I felt like this, I still required almost daily naps in the afternoon. I still couldn’t walk long distances without resting. My sleep was terrible and although my nerve pain had lessened it was still there, especially if on one of these glorious days I ‘forgot’ I had MS and ran around doing things all day. So for this reason most people have no idea what a day in my life looks like. So when I’ve been far too exhausted to put on makeup, this leads to questions like, “Is the MS back?”
Half of me wants to laugh because of how well I must be hiding how I really feel. While the other half is screaming some curse filled diatribe about how chronic illness don’t usually just go away. Really what does it matter what they think? Why do I try so hard to pretend to be great? I figure no one really wants to hear about my health problems. They are there, but we all have problems. Everyone’s going through something. Unless things are really bad I’d rather not bore or bum out the people around me. So I keep it to myself. I guess I’m sharing here as an outlet, so I don’t have to drag down my friends.
Since I can remember, I have always had trouble regulating my temperature. So the two extreme seasons, winter and summer, cause me the most trouble. Since I live in Southern Ontario, these are really the only 2 seasons we have. Two days ago I shed all my layers (tank top, t-shirt, long sleeve t-shirt, one or 2 sweaters, long johns, knee socks and pants) for my summer attire (dresses containing the least amount of fabric I can still pull off at thirty-nine).
At a doctor’s appointment this winter I needed pull up my shirt and down my pants to show her a rash on my thigh. She proceeded to tell me I was dressed like I was going skiing. This is my everyday attire in the winter. If I don’t wear it I am freezing all day long. Chilled to the bone. Where it is impossible to get warm. This is when the spasticity in my neck upper back and chest are the worst. I also struggle with Raynaud’s Syndrome in my hands, feet, nose and ears. The cold also aggravates the nerve pain in my legs and arms. So I am happy to see it go and am hoping I can soon put away my winter wardrobe and maybe this MS hug that is slowly crushing me.
Out come the sundresses and following closely behind neurogenic bladder. For anyone who hasn’t heard this term before, it means that I do not have any bladder urgency. What I do have is trouble emptying my bladder. This leads to bladder infections, leaks and becoming a contortionist in a valiant effort to void my bladder. Oh, and since most of the time I don’t fully empty I leak all the time and don’t know it’s happening until I notice I’m wet! Which hasn’t yet, but will probably lead to some embarrassing situation at sometime in the future.
Summer brings the heat and humidity. Both of these things are incredibly bothersome to me. I have an incredibly low heat tolerance. So if the temperature is between 28° C and 30° C I am hiding in the air conditioning. If I need to leave the house I carry Ice Packs and a small cooler that I can put my feet in, to cool down fast. If I overheat, my legs get weak triggering some sort of leg tremors. I get extremely fatigued, to the point of becoming listless and sleepy. I get terrible brain fog making me a dreadful conversationalist. On one occasion my husband found me on the floor because I had gotten down to plug something in and couldn’t move to get up. My husband picked me up off the floor and carried me over to lay in front of the air conditioner and then cover me ice packs. As soon as I cool back down, I feel slightly drained but otherwise ‘normal.’
I love the sunshine and sometimes I miss things because it’s just too damn hot! I especially have to be vigilant with my ice packs when venturing out on my own in the heat since it has the power to totally incapacitate me. So although I love Summer, my body doesn’t agree.
Thanks for taking the time to read this. It has been incredibly cathartic. If any of this resonates with you please share your story. I would love to read it!