Take your hope and shove it! (Part 1)

Damn, why is she so angry?

I can hear some of you asking yourselves this. I’m chuckling softly to myself. Sorry (not really) but it’s funny. You’re correct, I am angry. This is what prompted me finally to start writing this blog.

         Right now in this moment, I’m angry because I am feeling helpless. My brain is buzzing, flickering, shorting out, and causing mood swings I can’t control. This on top of the pain, physical and emotional, and neurological symptoms always bubbling under the surface every minute of every day. No, you probably can’t see them in the brief minute you took to appraise how sick I look.

        Oh, I’ve learned ways to cope with these things, and those measures usually help to a degree.

        But there simply is no getting away from the helplessness.

        I haven’t had the chance to communicate with a lot of my kind. The kind with Multiple Sclerosis that is. On some level I don’t need to, we all belong to the same club. A club that has no perks. Despite every person’s MS being unique to him or her, we still understand one another in a general sense as people with Multiple Sclerosis.  

        Only the people we depend on to take care of us every day, can understand on any level what kind of life we lead. Well, that is, for those of us who have someone willing to fit their head around this disease, accept its foibles, and stick around to understand. I’m one of the lucky ones in that department. I know of people with no support whatsoever, battling against the disbelief, anger, and judgment of the people who are supposed to love and support them. Never mind how they survive financially once forced to stop working. Many of us are, forced. It’s not voluntary in the correct sense of the word. We have no other options. Body no worky.

            Without my husband, I don’t know where I would be right now. Okay, I have a pretty good idea. The word is dead. The other word is suicide.

            Never once has my husband questioned the validity of how shitty I feel, how trapped I am in my body and mind or that something must be wrong beyond the Clinical Depression, Irritable Bowel Syndrome, and OCD tendencies. 'Right? Oh my god, right? Please tell me I’m not fucking crazy!' (I was sure it was all in my head and I was losing bits and pieces of my mind, slowly and surely).

        Because, really, who in their right goddamned mind would want to add to OCD, IBS, and Clinical Depression!

        And yet, oh so much more was to come.

           I don’t believe I would be alive today without my husband, Sean, and his gritty determination to understand, and to help me. I also attribute my current survival to my bevy of furry, fluffy, waggy and purring kids that get me up every morning, whether I want to or not. They are my therapy every day. Yep, I go back to bed to read and inevitably sleep more once the furry herd has been out for potty time anywhere from 5:30am-6:30am, but I'll never be a morning person. MSers tend to need a good 10-12 hours of sleep. I'm one of them. And getting TO sleep is a bitch. So, you see the dilemma.

 
I would also like to give a shout out to my mom, who remained devoted to understanding, even when she didn’t.

 Much to the dismay of those who don’t, and won’t understand our disease, those of us with MS tend to resign ourselves to our MS. Sometimes it's the only way to keep going. 

        Essentially, as my husband so eloquently put it, Multiple Sclerosis is a disease ‘without hope’. Why would he say such a thing? Because he understands his wife's disease, because he's been with me every step of the way and witnessed (almost) every ugly facet (thankfully he's never had to clean up after a very brown accident). No, there is no pretty with this disease.

         About here, the doctors and folks who accept MS but cannot ever understand it on the level of someone suffering from it, would bluster and disagree. They chatter about how close a cure is, how this drug is kicking butt, and how excited about this upcoming drug they are. Well, here’s the thing. MS is their life’s work, their bread and butter. Why would they want you to lose hope? You might stop buying the meds, doing the expensive therapies, and buying every gadget or substance that may possibly offer a smidgen of relief.
      (Cue the collective GASP). To which I respond:
     Are you really that naïve?
    And honestly, I like my neurologist. But I've caught him doing this.

       Besides this hope crap, people love to tell us what we should and shouldn't do to help ourselves, to make ourselves better. Even though they haven’t read one page of what this disease is, means, and does to us. I chuckle here (and maybe imagine strangling them a bit), because the things people come up with are ridiculous.

I don't know, maybe telling me what I shouldn't be doing (like I am causing all of this deliberately by eating everything 'poisonous' I can get my hands on) makes them feel like they’re doing something useful, but without having to put too much effort out. Preaching is easy. Eat this way, don't eat that way, avoid absorbing that, do this, do that, take this and that supplement….and above all.....think positively and have hope! (cue rising sun, fluffy clouds, rainbows, and fucking cherubs).
    
      Shit, I almost guffawed all over the place there. Anyone who thinks diet can any way affect an autoimmune or neurological disease that manifested when I was in my early teens, (before I ever touched aspartame thank you very much) needs to do some more reading.

Please.

Before I punch you.

And so help me if you tell me to chin or cheer up or turn that frown upside down...

I will indulge in a fantasy of beating you with soap on a rope.

       I AM FROWNING (or perhaps it’s a grimace of agony) BECAUSE I'M IN CONSTANT fucking PAIN AND MALFUNCTION!

      Here's a tidbit for you: I don't frown much, unless the sun is in my eyes, or someone was needlessly (it’s always needless btw) rude, to me or someone else. Nor do I get ‘grumpy’ or impatient easily. It takes a great deal to cause me to be intolerant, impatient, or disrespectful. To be blunt, you have to be one hell of an asshat for me to get any kind of uppity.

     So if I am a little abrupt, or less understanding, or a teensy less sensitive to your delicate needs…please…try to imagine…

The IMMENSITY of what I am physically, mentally, emotionally (messed wiring makes for some interesting mood swings) experiencing at that time!

Again, please. Before I punch you.

        And no, it IS NOT anything like YOUR malfunctions. There is no comparison!
        I did NOT have a choice to see a doctor years ago to prevent this. I did not have the option or choice to stop doing something to improve my disease (i.e.: stop smoking, drinking, shooting up etc...)I didn't DO anything wrong to cause this. I made no bad decisions that directly resulted in this disease. I am a 35-year-old woman, in the prime of her life who has to swallow that she does not get to live her life the way she wants to, for no particular reason. I have to take what I can get, do my best (with my trusty husband and pets by my side) to accommodate, work around, work with, find an alternate route around, or just plain wait until whatever is involuntarily happening peters off.
      I have to ‘hope’ or silently beg for it to turn in to something else. Something that's less painful. Or less humiliating. Or less problematic.

Oh, and all three of those are interchangeable at any time, and all three are always happening on any given day at any given time, to varying degrees.

      It's fucking exhausting in every way.

         
Think positively. I do actually, along with making
goals, and reaching for my dreams (which must be flexible at all times).
     Because I'm a fucking warrior.
       I'm not going to sacrifice the truth, and MY reality for other people's ideas of 'positivity', so it will make them feel better about my suffering.