There’s a show on TV called Hoarders and it’s about just that, people who keep so much crap in their house that they literally can’t get into rooms and sometimes even find dead animals buried beneath the plethora of….everything! I’ve been thinking a lot lately about hoarding. What do people keep and refuse to give up and why? While I am not a hoarder of things, I’ve recently realized that I am a hoarder of unnecessary emotions. There are too many things I care about that I really shouldn’t. I know that stress isn’t good for anyone and with MS you physically feel stress and that can actually be quite scary at times. I know this intellectually but the hoarder in me can’t help itself. I carry so many feelings of worry, doubt and frustration that’s doing nothing but making my face numb, my toes burn, my mouth forget how to say words and my legs wobble- equally embarrassing at times as frightening. Some of the emotions I’m hoarding have to do with my MS but most of them have to do with really ridiculous things and people. I really frustrate myself sometimes! So, I need to clean house so to speak and give myself room to feel better, sleep better and smile better. There are things worthy of keeping, some forever and others for only a period of time. There are also things that should never be allowed in your head and heart and some that only need to be there for a while. The first step is always recognizing the problem which I have. Now, I need to devise a plan to throw away a bunch of crap….for good.
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!
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?
When I think of my aunt I always think of the small suitcase she always travels with to carry all her pills. She seriously has a suitcase there are so many! It’s something that’s always bugged the crap out of my mom and has kept her from taking medication. She isn’t going to be as ridiculous as her sister even when her refusal to take certain medications is even more ridiculous. I can now see that her attitude has influenced my own. I feel like taking anything other than my Copaxone is excessive and would put me on the teetering edge of becoming a hypochondriac. I’ve already succumbed to the daily ritual of Dexilant because without it I can’t eat without the food either feeling like it’s trying to kill me with knives and fire or the food literally deciding to make its way out the way it came in. This has proven to not only be quite embarrassing at times, but totally sucking all the time. Dexilant is a little blue pill that makes me just as happy as that other blue pill makes many middle-aged to you’re-really-not-too-old-to-still-want-to-do-that-so-often? aged men. I’ve even given in to a daily fix of Lexapro because I was sure both my children were going to get MS too, my son wasn’t going to want to go to college and I didn’t feel like leaving my bed was all that important. Soon after, I had to add some Wellbutrin to the cocktail because even though I had anxiety and was clearly depressed, I was having side effects from the Lexapro that were not acceptable My fatigue had gotten worse and I was also hoping the Wellbutrin would help with my lack of energy. So, here I am without my food escaping or trying to kill me and my anxiety and depression have moved on. Still, fatigue is a common problem for people with MS and mine has become incapacitating at times. I also deal with “Restless Body Syndrome”. Restless Leg Syndrome…pshh, that’s nothing! When my body isn’t going all ADHD on me it often feels like there’s a knife at the base of my skull being twisted back and forth or a vice trying to break my head open. I know I sound overly dramatic but I’m writing this while in a lot of pain. I’ve picked the phone up so many times to make an appointment to see my doctor about these problems but the image of my aunt with her pill suitcase and the sound of my mother’s heavy sigh at seeing her makes me hang the phone up every time. I go back and forth between telling myself that I can manage these symptoms with lifestyle changes to screw your mother and your hypochondriac aunt, you can help yourself with as many pills as you’d like. Right now, I take one shot three prescription pills and eight vitamins a day. I’m feeling like that’s too much already but I have MS and MS has its own suitcase full of problems. Isn’t it okay for me to have my own suitcase and not be seen as a hypochondriac? I already feel like my MS and it’s symptoms are misunderstood to the people around me so I try to hide it as much as possible. It’s getting harder to do that and adding more pills to take throughout the day will only be harder to hide as well. It’s too late to call the doctor today and I’d like to say that tomorrow I’ll blow all the crap in my head off and help myself but I’m pretty sure I’ll hang the phone up again. I feel like I should apologize to anyone who reads this. I’m whining and for that I am sorry……again.
Is it ever not okay to use your disease to get people to back off? For the first time, I did just that. I haven’t been very vocal or even open about my disease but last week I was so angry and annoyed that I asked people to stop what they were doing because I was physically becoming numb from the stress of the situation. It was something that I never wanted to do and there I was doing it. I have to admit, it felt good. I know that if it weren’t true it would be wrong but if your symptoms are becoming worse because of stress is it okay to point that out to the people who are stressing you out?