Water Bill.

I received a notice from social security telling me that basically I can work no more than 80 hours per month and can  only earn under a thousand dollars a month.  Trial Work Period is what it's called.

 The problem with Trial Work Period is that Multiple Sclerosis is unpredictable at best. I cannot rely on my brain and body to do what it's supposed to do when it's supposed to do it or even begin to assume how any given day will be.  I encountered many problems when I worked outside of the home with my health being unstable.  Employers do not take kindly to a lot of call outs or having to leave early.  Even if it's for doctors appointments, the attendance policy that jobs have will not allow me to keep substantial or gainful employment. Even when thinking about working 20 hours, you have to take into account that I'll need frequent breaks, and my brain and body may not be up to par.  I've found that my social issues make it nearly impossible to keep a steady job.  Even in self employment, since my fatigue and cognitive issues are present, it'll be a definite losing situation to be at a job outside of home.  The symptoms I experience with MS make it hard to even work at home.  I can't concentrate enough to get tasks completed, which is why I have assistants to lend me assistance.

  Meanwhile, bills are still due.  If I can't work then I can't eat, right?  Thankfully, I'm married and I've learned how to work with my disease. We have to budget really well to stay afloat.  I know it takes more hands than just mine to get things done.  My husband stays home with me to ensure I'm well, physically and mentally.  I've come to trust him with my life, which was always hard for me to do.  I pray for him and continuously hope that he doesn't give up on me.  There are so many MS patients that don't have the support that I have.  Even when social security is confusing me (so many notices and in reading them, I can't fully understand what they mean), he's there to keep me calm and tell me not to worry.  And that helps.

  I can't help but to worry sometimes.  I'm a disabled American who doesn't have anything any more.  I've had to start over, and that has not been easy at all.  With so much of my memory gone, I'm so thankful for those who remember and know me so that they can fill in missing pieces of my life.  I'm  honored when people think highly of me.  I've always tried to be fair.  I'm all over the place with my thoughts right now are everywhere because that's how my brain works.  And again, with my brain being all over the place, I can't work outside of the home or even in the home on something as steady as a job.  I can do projects, and I can manage them to an extent.  I thank GOD for my imagination because it's gotten me far in life.  It gets me as far as I'm willing to let it take me.  

  My message to anyone living with MS is to fight and learn and share the information. Bills are there and they are due, so  I advise anyone with MS to find deep in themselves creative skills that they may be able to be hired for, and to never give up on their dreams.  

#randomthought And honestly, we all need to pray for water; that we will stop being charged for things that GOD provided for free.  

Support MS Awareness today. 

Typing with one hand and being super mommy

My left side is getting worst with my motor skills.  At this point it hurts to type with it.  I definitely need speech software but i'm afraid that if my speech slurs I won't be recognizable. These are today's stressors....well, some of them.

  I need people to know how to work with me.  From what I gather, it's best to let me talk and then for the person to do.  <sigh>...easier said than done. Its the "doing" that is becoming more and more challenging. The "doing" takes strength and eill power that I dont always have.

Having an invisible disease means you get invisible assistance, lol.  Meaning nobody is going to do for you what they believe you can do for yourself. It's hard to hear "You're just making it up in your head".  It would be different if I had a hired assistant that would just do these things for me because they were paid to do it. But sadly i'm one of the low income individuals that cannot affored hired help. And that's why I get sad.

I have had no sleep, really.  My body feels drained.  Nobody monitors my rest so I am trying to do so.  If I had a paid assistant they could monitor how much ( or how little ) I rest, especially sonce I have insomnia. My son takes meds every 4 hours and I'm the one to administer it to him.  He had surgery (a tonsillectomy) The other day, and so you can imagine his pain.  And because it's pain meds, I'm careful to be the only one giving it to him.  I'm his mother.  This is what mother's do.  My husband and girlfriend open the top of the child-proof bottles for me, but I do the rest.  That's a lot for me. And my son reminds me when I forget, especially when he's hurting again, so we are working together. I didn't realize how much pressure this is for me. My son helps me take care of him because thats how my children have always been since MS came into our lives, but with a little funding I could get someone to help me take care of me, too. http://www.gofundme.com/write-4msawareness

Despite the motor skills challenges, I carry on. I'm typing this with my right hand only when typing with the left hurts too much. I think once my stress goes, my motor skills will return.