I was diagnosed with Multiple Sclerosis eight years ago. I’m now fifty-seven and I feel like I’m so much older physically. I’m pissed about this today. Most days my mind is filled with so much other nonsense that I just trod along like some old fat mare, chasing the carrot in front of my nose, and I just deal with all of the things going on in my body like it’s a third arm.

I deactivated my facebook today. Not for the normal reasons…political vomit, small town shenanigans, angry, militant people mad about everything , relentless targeted advertising….

No. I deactivated it because people in my personal life hurt my feelings. Not normal hurt-your-feelings, instead, things that suck out the minuscule amount of energy left in my MS riddled body and make you want to smash your Mac book against the dining room floor.

I’m going to complain and explain here. Again, move on if you’re looking for some sort of inspiration here. I mean, who knows, the Holy Spirit might grab my pen and change the direction of this little ditty, but so far He seems to be letting me alone to have a bit of a hissy fit.

Let’s start with my blog. I have five children. Four are left here with me, I lost one of my sons three years ago. Not one follows my blogging. Two have serious thoughts about writing, irony. My Mom? Nope. Doesn’t give a crap. Two daughters in law, best friends, husband? Nope. I’m choosing to look at this as a plus today, I can vent til my hand cramps up.

I have about 294 symptoms on a rotating basis. I have normal things going on, sort of. I’m tired. That’s normal. Sleeping twenty hours in one day and being absolutely unable to hold your eyes open during a conversation isn’t normal.

Charlie Horses? Normal. Daily, relentless muscle spasms that hit me like an F-5 tornado with no warning. Just BAM, the twister has ripped my roof off and I’m still trying to get the mattress on top of me in the tub. Not so normal.

I’ve been angry for several days. For so many reasons. This may be turning into a pity party, if you’d like to decline the invitation, move along in an orderly fashion.

Anxiety? Sure. I’m sort of pissed they haven’t come up with another name for what I’m feeling. I’m sick to Texas of hearing, “Oh yeah, I have anxiety too!” and it’s because you can’t decide on a lipstick.

I know so many people have anxiety. Tragic events mixed with our insane world would give anyone anxiety.

I have lesions, scars from the MS, buried all over my brain and spinal cord. I have several of them in the part of your brain that controls emotions. In other words, a boa constrictor has wrapped itself around my Amygdala and is throttling it all the time. Compressing, constricting, compacting my happy, my sad, my mad, my impulses and compulsions, my anxiety. I’ve gotten to be an Oscar winner at masking all of this. Meryl Streep hasn’t a thing on me. I can slap a smile on my face and hug your neck and ask about your kids and your momma, all the while wanting to sob or pinch you. I’m kidding, I won’t pinch you, but only because I’m such a people pleaser I wouldn’t be able to sleep if I thought you were upset or no longer liked me. That part isn’t lesion caused, I was just born like that way. I became so crippled by the fear of rejection that I’ll never do anything displeasing on purpose. Or accident.

People who ‘love’ me are mad when I can’t do the expected. If I’m too tired, they roll their eyes. (I should have knocked those out of their heads as threatened when they were still little enough I could do it.)

I digress…

I’m not tired like you. I can’t nap or have a good night sleep and feel better. My fatigue is so all encompassing that I can’t sit up anymore, can’t blink without just leaving my eyes closed. It makes me nauseous. I feel like someone slipped me something.

Speaking of nausea. Holy carp. I feel like I’ve been permanently pregnant for about six years even though it’s just air and cobwebs where that particular event would happen. My neurologist told me, yes, MS patients suffer from this but they don’t know why. I was actually tickled to finally have someone validate this for me.

I have a lesion that pushes on the bundle of nerves that sit at the top of your spine. This causes unbelievable pain in my right arm. There are days I think I’ll lose my mind it hurts so bad and so long.

Cramping and spasticity in my legs. It’s like a bad toothache in my legs.

Restless leg syndrome.

The notorious MS Hug which feels like Dewayne Johnson is giving you a bear hug. Not in the good, sexy way though. In the pre-Hollywood, wresting ring way. It feels like you have a super tight corset that makes you prop up straight whether you like it or not. Trying to take small, shallow breaths so you don’t make it worse.

My vision is severely impaired. I have no peripheral vision. The cost of that is no drivers license. I left the house a few days and as we drove towards town I was trying to calculate the last time I left the neighborhood. I think it was five weeks.

My body no longer regulates my temperature. I can be hotter than you’ve ever been in your life to freezing cold in a matter of a couple of minutes, then back again. Over and over. For hours. The first time this happened, it scared me so bad I went to the hospital and got a round of high dose steroids .

I did steroids for all flares in the beginning. Then I learned how terrible those made me feel. The side effects were a lot. I also found out the end result is the same with or without the steroids, they just slow it down a bit. I only seek treatment like that if things are really bad.

Migraines. Weird sensations. Seeing ‘lightening’ occasionally out of the corner of your eye. Food tasting like it’s rotten. Feeling as though you’ve got a mouth full of canker sores and there’s nothing there. Blinking feels like chewing on tin foil. Forgetfulness. Confusion. Forgetting words, thoughts, conversations, things that happened.

The bottom of my feet can feel like I’m standing on pavement on a scorching August afternoon. That can happen in February in the cold. Sensation issues. So many of them.

I’m sort of fine right now, manageable fine. However, I may wake up in just a couple of hours with any combination of these things. Or better yet, a whole box of new surprises.

I make plans, break them because I can’t, then be told how unreliable I am.

I push myself. All the time. I go. I go to my grandkids. I play hard and swallow the tears or bile. I square my shoulders and push myself relentlessly until I can’t go one more minute. They see me acting ‘normally’. I come home and crash. I lay on the couch for a week. I don’t bathe and brush my teeth, it’s too hard. Too much energy. I don’t clean or cook or do laundry. Everything gets completely out of control. Then I wake up one day and I’m better and the pushing begins again.

Oh, and did I forget to tell you? I’m three years into mourning my son’s suicide.

Another story, another time. Also, another layer of soul crushing heartbreak to wade through.

In all of this, I have to deal with ignorance. Uninformed options and outlandish expectations.

Empathy? Bahahaha

I’m so tired. From this disease, unrealistic expectations and just plain meanness based on things so completely out of my control it’s laughable.

I’m almost done. I want to sincerely say that even with all of this crap, I have it so much better than so many others. Im thankful for so much. I’m fully aware this could be so much worse. I know. I respect the blessings I’ve been showered with.

The hard thing is, I can still be so darn mad. I can recognize my good fortune and still be so pissed and worn out.

Funny random thought. I used to slip in an off colored word in my blogs occasionally and my Mother told me that’s why she wouldn’t read my writing. So I quit. For years! Shes never been here. Never read one post. That is crushing.

So now I can say ‘pissed’ again and not worry about it. Silver linings.

Okay, I’m done. I’ve gotten it all out of my system for a while. I’m going to paint that smile on and make myself stand up straight, minimize any limping, try not to fall asleep in the middle of a sentence and say ‘I’m good!’ and truly try to mean it.

I still think God is good every day and he is allowing all of this for a purpose. I HAVE to hold onto that. If all of this was for nothing, I’d be so much more than just pissy.

Get on Pinterest or Google and search for the hard things people who have disabilities, mental issues or autoimmune diseases have to deal with. Educate yourself and try not to be selfish about things that seem unfair. It’s unfair to them not you. Perspective man.