…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
The trial coordinator called and talked with me about a Gilenya trial. I excitedly said yes and so she added my name to her list. She told me that she didn’t see any reason I would be excluded. Of course, like always, my brain only faintly heard her words because of all the worrying thoughts that have set up camp in my head like those snot creatures you see in the Mucinex commercials. I know that before you start Gilenya you go through a series of tests to make sure everything is working right in your body, except excessive clumsiness, forgetfulness, numbness and bladder voiding. Well, I should say excessive attempts at bladder voiding because if you’re constantly going you’re not really voiding, you’re just going. Anyway, all of these things are a normal part of MS….yay team! The things they check for before starting Gilenya are heart, eye and lung problems. There may be more but this is all my brain is coming up with right now. I haven’t noticed any eye or breathing issues and my blood pressure is always low so I should be good to go. The trial should start in about six to eight weeks so, until then, I pretty much have everything crossed that can be crossed. I’m thinking positive thoughts and hoping really hard that this will happen, all while trying to kick those annoying snot creatures out of my way!
I wanted a perfect ending. Now I’ve learned, the hard way, that some poems don’t rhyme, and some stories don’t have a clear beginning, middle, and end. Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what’s going to happen next. Delicious Ambiguity. – Gilda Radner
Again, my life has decided to accelerate way too fast around a sharp turn and I’m suspended in that turn feeling dizzy from its brutal form. I thought things were going to go differently and that I could finally exhale slowly and effortlessly in this part of my life. I thought this was a part that I could control, even if only part of it. I was wrong and have been utterly surprised by life. I guess, to be fair, it is people or I should say persons that have me shocked and shaking my head. There are people out there who, driven by their want for success and financial aspirations, will lie, cheat and steal to get what they want. I’m bouncing between disbelief and anger and these emotions have me spinning, suspended in a place I don’t like. I know I will land safely and, although I may want to throw up for a while, I will be okay….well at least I better be. I’ve chosen to take what I see as control and try to join a clinical trial. This turn I speak of includes a definite insurance hurdle that I’ve had to jump too many times already and is the most stressful part of my situation. I don’t have the energy to go through it again! If I can get into a trial, I will have my medication and medical care with my neurologist. I am tired of someone behind a desk controlling a big part of my fate with MS. I want to feel like I have some control in this ride and right now I don’t and I’m spinning. I don’t know if this will happen because there is criteria that may exclude me. I also know that my MS can change at any time. Today, I can walk unassisted and see clearly. Tomorrow, both can be gone. So today, at this moment, I am feeling in control and it is liberating. I will hold on to this feeling until it is ripped from my grip. Here’s to today and to now! Oh, and karma…..please let there be karma!
There’s always something we want to do, have, change or be. It may be buying a new car, shedding unwanted pounds, writing a book or becoming a better version of yourself, whatever that might mean to you. I’ve never been a car person but I’ve wanted to lose weight, be a better wife, mother and friend and bringing myself to start this blog was a huge leap of faith for me! There are pressures that have been there for as long as I can remember that served as motivation for me. I want to look good in a bathing suit, I want my family to be nourished in every sense of the word, I want people to like me and want to be my friend and I want to put my thoughts into the universe in hopes that I might reach another soul who not only understands them but who can maybe even be changed by them. I’ve wanted all these things for a long time but now, while still wanting them the same and wanting the same outcomes, I’m motivated to accomplish all of them by something different-fear. I am scared that the day will come that I won’t be able to write, think clearly, cook, clean, do my daughter’s hair, watch lacrosse games, attend music performances, lift weights, run, walk, see. I am scared so I am now laying my foundation. I’m working out regularly, I’m almost always present at all the things my children do, I host parties for my children and their friends as well as mine and my husbands. I don’t want anyone to forget how I am now and how I have been present. I want my friends to still want to be my friend even if I’m not so much fun to hang around. I especially want my husband to feel like he’s had a good wife and my children to feel like they’ve had a good mother. If I push myself and stay committed to all the things I’m still able to do, I will have a better chance of these things. I also take the phrase “If you don’t use it, you’ll lose it.” to heart and task. I need to read, write and learn to exercise my brain just like I need to strengthen my body to give myself a better chance of beating the odds. I am too scared not to.
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?