25 Things to NEVER (EVER) say to a Person with Multiple Sclerosis

I have altered this list by adding answers (my immediate responses in thought) in parentheses'. My answers are what these little bits of wisdom and ignorance deserve. Most of us MSers keep our mouths shut because we feel we don't have the right to speak out about the gross misconceptions of our disease, or we just know it's a waste of our preciously hoarded energy.   

1. You don't look sick. (You don't look smart either, but I'm sure you are to some degree).

2. You shouldn't drink diet coke (or diet anything apparently) (SURPRISE! Diet drinks are NOT the root of all evil. Here's a tip: Reading stuff that isn't on Facebook, and IS backed by scientific study, is good)

3. OMG, this diet cures MS (There is no cure, shut your pie hole).

4. OMG, this vitamin will leave you symptom free. (Call the press, and all the MS neurologists, because apparently they don't know!)(Dumbass).

5. Aren't you gluten free? You should be.... (I'm mystified right now. A response is processing).

6. Try this herb; it helped my cousin's uncle's sister's friend who has MS. (Riiiight. If the herb isn't a medicinal strain of marijuana, then it isn't worth my time).

7. Well, aren't you taking your meds? (Why wouldn't I? Even though some of them outright hurt and make me feel even worse) Then why is your MS still bothering you? (Again, there is no cure)(Idiot).

8. Are you contagious? (Are you? Because I am starting to feel kind of fluffy headed).

9. You shouldn't eat meat. (Blinking in bewilderment at you, then walking away shaking my head).

10. What did you do to get MS? (Run. Right now. Or I'll punch you. In the face. With a piece of furniture).

11. If the heat bothers you...don't be in it, or move. (Oh well, okay. Thanks for that gem, I'll get right on that).

12. I heard a vaccine caused it. (Heard from...a reliable medical source immersed in the science of autoimmune diseases? No? Then fuck off).

13. Why are you dragging your feet (or foot)? (Because my brain is broken, does that not make sense?).

14. Why are you always so tired? It can't be that bad. (I'm loading my gun...you should probably run now).

15. Well if you are in remission, why are you on meds? (To stay in remission, you asshat).

16. That celebrity with MS seems just fine. Why aren't you? (Because I'm not rich and cannot afford every little thing that might help me to have a better quality of life. Like servants).

17. Are you sure it's MS? How can doctors be so sure? (Not dignifying this with an actual response).

18. Stop using MS as an excuse. You can't feel that way all the time. (Bitch, I will beat you in to oblivion. Turn and walk away right fucking now). (PS - Do you think we actually ENJOY living  this way?? Or that there are fucking perks? You are a moron).

19. Maybe you just need to try a little harder. (Not really sure how any of us would respond to this appropriately or even inappropriately. Its such a ruthless thing to say).

20. Why don't you try a different medication, that doesn't have so many side effects? (Thanks tips. If I could, don't you think I would?).

21. You seemed fine the other day. (That's be cause I'm one tough son of a bitch, good at hiding the constant pain and un-wellness. Unlike some people who whine over a runny nose).

22. You slept all night, how can you be so tired? (What part of 'my brain is broken', didn't you understand in #13?)

23. Oh trust me, I know exactly how you feel! (No. You don't. Don't ever say that again. You have no fucking idea how I feel. Now go away before I give in to the sudden need to set you on fire).

24. Oh you should just exercise more. (Wow, you're brilliant. Thank you. I'm cured).

25. It really can't be that bad. (Nah, it's not. I'm totally pretending. Now fuck off. Quickly).

The original list was compiled and published by Penelope of 'Living Positively with MS' https://www.facebook.com/PositiveLivingWithMs

**I would like to conclude with: Yes, I am aware that some people say these stupid things because they don't know how to deal with a loved ones plight. But some people also just say these things because they don't care to learn or understand more deeply. So, this is not aimed at the struggling loved ones. Unless you're a loved one who is being a selfish bastard when someone needs you the most. Then you can piss off***

Take your hope and shove it! (Part 2)

       
Those of us who progress on a steady slippery slope are the minority of MS patients. Some have a less aggressive Multiple Sclerosis and live mostly 'normal' (I use this term loosely), productive lives. But even the majority who live semi-normal lives have to consider their disease on a daily basis, and work around it to some degree.

       “There’s always hope!” they say. Say the doctors, neurologists, nurses…..who don’t have MS. I’m smiling patiently now, trying not to chuckle…or scream (or high five someone....with a  chair...to the face).

Of course there’s always hope…however....

       When you almost, or do, shit your pants on a regular basis (including in front of a customer where you are picking up some shifts at an easy very part time low impact job), hope is hard to come by. A sense of humor is hard to drag up too, because usually you’re crying because you made it to the toilet, but not ON it, before the inevitable happened, and now you’re cleaning yourself up.
      When you gobble meds for pain, or sleeplessness that never truly goes away, hope is faint. When you often can’t drive due to neurological symptoms, and can’t walk or do chores due to fatigue, hope is something of a smug smile in the background.
      When you look in to your dogs’ hopeful eyes on the second day of the third week of the second month they’ve been stuck in the house with you, without a walk or park outing, because the fatigue and or pain and or neurological handicaps have been too much, hope can pretty much kiss my ass.  
     When you have to save yourself, thus neglecting your dogs (MY kids) for the one or two days per week of work, you can manage so you can afford (ha ha, afford….funny) your one income household… well, hope seems distant.  
     When you have a mood swing that’s so beyond your control  you have the desperate compulsive need to cut your arm open and see bright red blood well up and spill over, and all you can do is cry, chanting in your head, ‘it will pass, it will pass, it will pass, work through it, work through it, it will pass’ while rocking back and forth...
    Yeah, how bout you get back to me on that hope stuff. Actually, no don't. I'll probably walk away.

       Sure, there’s always hope, for those of you without a debilitating disease that utterly changes every nuance of your life, and if you’re fortunate enough to have one, also your spouse’s life. But some of us are a little too busy with days like this to entertain hope. We’re trying to survive mentally and emotionally through this day, so we can face it all again the next.

       So, those of you who don’t actually have this (or a similar)disease, and know very little about it (lots of info out there)(just sayin', if it isn't on Google, it doesn't exist)(reading is a good thing, especially when someone you love would really appreciate you understanding them better)….
Well...
You and your, "There’s always hope," "Stay hopeful" "They’re so close to a cure" can immediately and vigorously...
SUUUUUUUUUCK IIIIIIIIIIIT!

 

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.    

Whassat? Caffiene you say?

Surprise surprise (not), I've been fatigued solidly day to day for a few weeks now. This means any scrap of energy I can muster and hoard away, goes to dishes, cleaning up after animals, adoring said animals, and spending time with hubby. And ma-a-aybe playing Fallout New Vegas or Fallout 3 (sly grin).

I promise, I'll post something pithy, explanatory, and meaningful soon. Until then...

Hooray for funny Facebook generated pictures and sayings that adequately sum up my life!

 

Replace 'keys' with 'imaginary balls to keep going?'

(Yep, there they are).

Let's get this started shall we?

 

                     

 Just a note/warning:

I don't feel the need to sensor myself, especially when it comes to my disease. So, there will be a great deal of expletives in my posts, possibly rude analogies, ponderings and meanderings of some magnitude, and a lot of humor. This blog is more for my catharsis than anything, but it's also to help educate the people out there who STILL don't know anything about MS (one of the most prevalent diseases plaguing us these days, come on people!).

Those of you who know nothing, let me edu-ma-cate you! Those who know a bit about it, feel free to just bask in the glare of my inane hysteria and daily struggle.  

 

Disclaimer: there will be a whole lot of grumbling, snorting, and unapologetic anger, disappointment, or frustration at any given time. Deal with it, it's my goddamned blog.

 

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