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".
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 http://www.blogtalkradio.com/victoriousradiocommunications (follow them). Their facebook is https://www.facebook.com/weloveoursisters4life/?fref=ts . 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.
Attica https://www.gofundme.com/write-4msawareness