…that’s draining me into a lump on the floor. Seriously, I am so tired and not normal tired, MS tired which is normal tired on either steroids or crack-your choice. I haven’t written in over a month now and I feel it mentally and emotionally. There is therapy in writing whether it be journaling, letter writing or blogging. I’ve missed this and I have chosen to blame the heat for its absence. I’ve never asked my doctor why the heat affects people with Multiple Sclerosis so greatly and why our fatigue is so bad. What is happening in our bodies that makes these so? I figure inflammation plays a part but what else? I need to remember to ask this next month. “Remember”…..that’s funny.
There are some awesome things and tricks I’ve learned the last few years that really do help with the heat: * Ice behind the neck (my personal favorite!) *Putting wrists under cold running water or against ice packs *After a shower allow hair to air-dry while laying on the bed with the ceiling fan on high *Freeze juice in ice-cube trays to munch on throughout the day *Tell yourself everyday that summer doesn’t last forever
I look at myself and think about a new character on Seinfeld. I’m constantly seeing everything wrong around me, complaining about it, making fun of it but, unlike the other characters, I’m not funny and no one is laughing. It’s not that there can’t be humor in my situation, I just can’t seem to see it or allow it. Maybe if I have an “Elaine dance” or I enter and leave a room like Kramer- I do have a natural clumsiness about me now. Is it too soon or am I falling into a pit of despair? MS does feel like the “Soup Nazi” always denying me, even when I wait, telling me no. I know that laughter and being able to laugh at yourself are good things, healthy and health stimulating even. I think I’ve done well benefitting from it until MS. MS feels like the “Soup Nazi” and while those of us watching got a good laugh, the character denied most certainly didn’t. All I hear is NO!, NOT FOR YOU! and ,if I’m lucky, BACK OF THE LINE! everyday. I want to find a way to laugh about this. There’s comedy in there somewhere, right? Is anyone laughing?
I know my goal for the new year was to be positive, see the silver lining, be grateful, believe in unicorns and wishes made on stars coming true….. Okay, I’m in a bad mood and I’m not feeling too great. My mood is probably what is making me feel bad physically but I have MS and I’m allowed to blame anything on it that I want, especially feeling like crap. Well, not really but today I dare anyone to tell me differently! I am so tired of my insurance company telling me that I’ve exceeded my benefit limit and asking me if I want to talk with a pharmacist to find a more cost-friendly solution, you know, because there is one!?$!# I’m tired of people telling me that my Copaxone is toxic and is only there to line the pockets of “Big Pharma” and the doctors paid to prescribe it. I’m tired of hearing about the recent Gilenya death and how there are surly others that have been covered up. I’m tired of being told that I have a “leaky gut” and that my diet is what caused my MS and changing it is the only way I’ll ever feel better. I’m tired of giving myself a shot. I’m tired of always having a ten thousand dollar balance on my credit card because Copaxone is so freaking expensive. I’m tired of the term “Big Pharma”. Mostly, I’m tired of being tired. It’s exhausting to me to think about the fact there is no cure for MS and that it’s a progressive disease. I want Gilenya to be an option for me both physically and financially. I want the days of jabbing myself with a needle to be over. I want to be able to enjoy fried pickles and a beer without the voices in my head telling me that Dr. Swank and Ann Boroch say these are both taboo. I’m sorry to the two people who read this because who wants to read such crap?! I hope you both are having a better day than I am and I promise to be more upbeat, or informative or at least not so annoying. Maybe I need a nap…..