Thursday, February 18, 2016

Adjust your attitude about my attitude

Oftentimes I have a headache or a head pain.  That's how it always starts.  That's everyday almost.  It makes just sitting around looking out of pain impossible.  This is one of the things that annoys me greatly.  See, I sit with a frown on my face ...which is called a grimace...but most people don't know that. Especially family and even spouse.  So ten minutes after I've been asked what's wrong and I've said headache....I'm asked again. It's probably because my facial expressions are all over the place.

I'm often misread.  I don't know why, but it's hard to explain to people that pain causes you to be grumpy or non perky.  I put on a happy face but then it looks weird. You can see the pain in my eyes. That's why I love that song "Sunglasses At Night".

My neck is probably crooked because I been cussin. Gotta stop. Medical terminology says it's spasticity.  Even so,  I don't like cussin anyway because it sounds ignorant to me after going into the cuss zone. I miss the vibe of the Holy House but love the mountain scenery.  

Today's gonna be a good day and no more cussin, even if provoked. This hurts. So glad it wasn't hurting when we had friends in town.  SPIRIT is awesome.  I'll bare the agony of this darn pain but best believe I will be on meds today til I get whatever else I need.  This lady told us about Groupon having a special on chiropractor. Even though our chiropractor is in Atlanta,  I may try to go here. Gotta do some coin earning now. I have ad space available and we get commission off ad sales so guess who's going to do sales? Me! And take naps because we are in today. I'm so appreciative. Had a great time with fam week and didn't have much pain and also got to help on Broadway and didn't have muscle pain, so I'm just thankful that the timing is  how it is. This is peace. <3

I love my MS Facebook groups. I vented about this sane issue and lots of the people understood and could relate. So many fellow ms'ers experienced being accused of being in bad moods or being upset at stuff when in fact they were just in pain. My favorite group, WE'Re NOT DRUNK, WE HAVE MS had a lot to say about my frustration when I posted there.  I posted "Does anyone get accused of having a bad attitude when you are just simply grimacing from pain?  How long does it take people to understand?  I find myself isolating myself so I won't be misunderstood and it won't lead to stress.  Anyone else?", and the responses started pouring in.  People could relate.  Finally people who understood!  Some of the MS'ers use humor to play it off, and other's don't care if people understand them or not.  WE, and I feel comfortable in saying WE because they totally get WE feel like it's a rhetorical question.  Of course we're not alright.  We may be a little alright or so far from alright that it's not funny, but none of us are alright.  We have to overstand this.  And we have to live with it.  Most of us are past the point of, as one MSer put it, "frustration, anger, sadness, and disappointment in humanities poor attempt to understand". If it sounds sad, that's okay.  It is sad.  Just remember how Des couldn't hold it together anymore.  The quality of life with so much pain and dysfunction is very dim no matter what it looks like on the outside.

The MS'ers know it's frustrating.  One of them said "those who care don't mind and those who mind don't matter.  Be yourself."  I like that saying, but what if those who mind do matter?  What if those who matter do mind and those who can't understand matter very much to me?  What then?  I get that most MS'ers know that they probably only feel normal in the home alone. That's what they tell me and I can sooooo relate.  I mean, personally I hate this.  I don't know how to smile when I wanna bang my head against a wall to knock myself out because the pain hurts so bad.  I'm happy, but I hurt.  But it looks like I have an attitude or like I'm never in a good mood, or nobody can just have fun with me.  I mean, if I had a gunshot wound would I be smiling?  No.  And I can't continue to smile through this just to appease everyone else.  Who can smile through this severe neck, arm, and shoulder and back cramp pain?  I'm praying for the best because I do not want to believe the statistics, that MS patients are just destined to be alone because nobody will understand and accept us.  Those who knew me before this MSMonster know a different me than the ones that have known me post MS. I'm worth loving despite this nutty disease

As if the panic and anxiety attacks are not enough, I have to defend chronic pain.  Sadly, many MS'ers experience not being understood every day.  EVERY SINGLE DAY.  No letup, typically. People always think we are in a bad mood and then they tell us it's our body language.  We cannot help our body language as we frown, pout, cry, whimper, or bit someone's head off, etc. because this hurts to the core.  Asking us several times a day isn't going to do anything but aggravate the pain and our situation.  At some point, we won't be responsible for how we handle that.  And yet we are attacked and accused when all we want to do is to lay down somewhere and get relief or die...we just want the pain gone.  Smiles shouldn't have to be required.  Especially if we are happy otherwise.  People..just let us not have to smile all the time.  We could be happy as a lark but with constant questioning on if we are okay and telling us we aren't is going to put us in a bad mood, for real.  It sucks to be forced into a bad mood. If we don't laugh when you are laughing it should be okay.  We are dealing with something and still trying to be there with you.  Stop complaining.

It sucks that our children have to see us like this.  It's a constant problem and they miss us even when we are there.  We are not trying to be mean or unloving, we just require solitude at times to get through everything.  It's not us pushing people away so much as it's us getting to an environment that will perhaps turn our situation around.  We are not trying to be mean. We are not trying to be impatient.  It is taking everything we have to give to give to get through the pain. So if we don't talk much or we give short answers, it's because we have used all of our spoons and we are fighting to say alive.  This is the truth. I'm trying to pull myself out of this.  I try to stay active and as positive as possible.  Having a full range of motion does help keep the pain away., but once it hits, it hits hard.  When my muscles do lock up, and they are at the point of spasms, there's a hard know in the muscle that either I or someone else can put pressure on and try to rub it out.  If not, I try soothing herbal teas that calm, and if it gets worst I have muscle relaxer pharmaceuticals and pain relievers.   But first, I'll rest.  I'm on the radio again today, ya'll.  GOt an interview coming up thanks to one of the publicists on my team at On The Rise Magazine/Celeb Status PR, Mr. Daood Obaid.  It's on Victorious Radio (follow them).  Their facebook is .  I'm gonna take more meds and a nap so I can be prepared.  We go live at 5pm/Denver time which is mountain time.  Wish me luck!  I'll be discussing my story/my family, On The Rise Mag & Radio, my team, and my MS Awareness Campaign, Write 4 MS Awareness, and why we all need to be involved. I'm giving shout-outs so please comment below if you want one.  I'll do my best to remember and please tune in!  I will continue to push for a cure.


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