Lost Time

What gets me is that once I have been sent on a tangent, it takes me longer to come down from it than the ones who initially sent me into it.  It’s not worth it, you’d think, but what about if your mind and emotion won’t shut it down.  That’s me, living in hell again and being the only one to suffer from the lost time, time that I can’t get back.

My trouble seems to be communication and depression mainly, as well as anxiety.  Really tired of going through it.  What is Progressive multiple sclerosis?   Things just seem to keep getting worst for me.  I try my best to be “ in the game” but at the same time I'm fully aware but I'm not able to be the same participant but I used to be and it's so stressful not being able to be the person that I am.

It's not that I'm lazy.   I'm far from that.  If anything I'm an overachiever.   The problem is that I underachieve on so many things since MS has gotten worst for me. Using the example of what if I did not have legs ( I can honestly say that because at one time my legs did not work and there is no guarantee that they always will work so when I say what if my legs did not work, I’m speaking from a familiar place)  but I am still expected to walk up the street. With me sitting on the side of the road being an indication of my “laziness”, is there any way that I could go and walk up the street for someone else if I did not have legs to even do so for myself? This is the problem that I'm in; this situation that I am I have no ability to do anything with and yet nobody seems to understand that. I feel like my time here is Lost Time because I can’t get it back and I can’t ever have it again; a chance to be accepted and understood.  MS sucks.

Distress Under Fire

I get overwhelmed very easily.   Once I'm in a frantic state of thinking, it's best for me just to walk away from whatever situation if it all I can when I feel like I can't get out of the situation. I understand that I just drift off into my mind into my mood space, into solitude I can prevent the worst from happening.  

This is typical, but I hate that it affects me so much. I’m trying to spread awareness, but when it happens to me it’s really hard for those around me to relate to the information provided:

Recognition and testing

Early recognition, assessment and treatment are important because cognitive changes — along with fatigue — can significantly affect a person’s quality of life and are the primary cause of early departure from the workforce. The first signs of cognitive dysfunction may be subtle — noticed first by the person with MS or by a family member or colleague.

• Difficulty finding the right words
• Trouble remembering what to do on the job or during daily routines at home
• Difficulty making decisions or showing poor judgment
• Difficulty keeping up with tasks or conversations

Talk to your physician if you are concerned about cognitive dysfunction. A specially trained health professional (neuropsychologist, speech/ language pathologist or occupational therapist) will administer a battery of tests and careful evaluation in order to determine the cause(s) of changes (since cognitive function can also be affected by aging or medications, as well as depression, anxiety, stress and fatigue). (info from http://www.nationalmssociety.org/Symptoms-Diagnosis/MS-Symptoms/Cognitive-Changes

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On this 9th day of my #45DayRawFoodDietChallenge, part of the difficulty for me has been remembering how to get the meals together. It’s easy, right?  No cooking involved?  WRONG.  IT’S VERY DIFFICULT AND CONFUSING FOR ANYONE, but for a MS patient it feels like the worst thing in the world. This “fog” makes me just not be able to do things, like even providing meals. I can just stick something in my mouth but for other people to depend on me, this is really difficult.  I can’t decide on things which means planning which means I can’t do it.  I can do it, but it’s taking me forever in between just having to zone out.  I want to succeed in this challenge and in life, it’s just that having people to depend on me is hard.  I’m not always reliable and that hurts.  It hurts to not possibly complete a task due to the stress of having to interact with others in order to do something. What have I signed up for?

"Not as sharp as you used to be? You’re not alone. An estimated 60% of people with MS experience some sort of cognitive dysfunction in their lifetime. It might become harder to remember things, to concentrate or to plan and organize. And just like physical symptoms in MS, no two people experience these cognitive dysfunctions the same way" http://www.nationalmssociety.org/NationalMSSociety/media/MSNationalFiles/Documents/Momentum_Memory-Loss.pdf

Well, see the issue is not being alone isn't helping my situation. How can I live in this world as an active member of society and in my family not being able to remember things, concentrate or plan and organize? OH, THE DISABILITY INCOME. Ha! That's a joke in itself. I don't want to hear "You're not trying hard enough" or "Oh, it's always something". If I had no legs and couldn't cross the street would it be "Oh, it's always something" or "You're not trying hard enough"? NO! It's because i have an invisible disability and because people can't see it, they assume I shouldn't be frustrated about it or not be frustrated at them for not acknowledging that's what's going on and to cut me slack and not make me feel like crap for not being able to do stuff out of whatever reason my mind won't focus on it. Day 10 should have come with all the answers, that's for sure, and it would have made my life so much easier.
Signed,
I'm hungry, tired, and scared but keeping on this challenge if I can.
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Completely Tired

I spent the greater part of the day trying to get some things accomplished. One of the things that I wanted to do was to put some shows together, and though I was able to schedule the shows on the proper dates and even book talent for three segments,  I was not able to go any further. This is actually quite common and that's one of the obstacles that I face on a daily basis. Just trying to get activities completed is a struggle.  I found that because I'm having such a difficult time completing things, if I start them advance time even if I only get some of it done, I will have enough time to ask for help some.

Im exhausted.  I dont really get good enough rest, not because I don't have the opportunity,  but it's mostly because my mind races all of the time with new ideas or new worries all at the same time. It's so exhausting. I Don't Want To Miss A Moment Of Life and taking a nap to me WILL take me out of the game; at least for that time too.

It's funny, but before I even began the Cannabis treatment I had a fog about me. It's quite frustrating to get stuck in a thought process and just not be able to get the idea or even the right words out. I might not be able to figure out what I was just thinking about or even what I'm  supposed to be thinking about or where I was going with an idea.  Being confused a lot is very frustrating throughout the day because it allows others to have control over me, and depending on how confused i am, paranoia makes me have to second-guess a lot of stuff because it just doesn't seem make sense. The cognitive issues has really put a damper on a lot of things I find myself not wanting to take a lot of the challenges just to not become overwhelmed. 

As we continue to work on the On The Rise projects , I do have more hope. I want to continue to get the word out about people with MS and I want people to continue to understand that multiple sclerosis affects so many people in so many different ways, but we still matter whether we are fully competent or whether we are fully handicapped.   These are my thoughts for the day. I'm tired and hoping I can bring some money in. I want to go to massage therapy at least six times next month.

Please support MS Awareness.

Stuck Like Chuck

I've experienced more cognitive issues in the last past years since 2013.  Different patients have different issues when it comes to cognitive issues. For me, I'm currently having difficulty with planning and problem-solving and tending to become overwhelmed and inflexible when a task is too complex. I don't have it in me to have flexibility to generate alternative solutions. I'm in a horrible and confusing "MS FOG". 

I'm glad that at an early age of five, I was tested with a high IQ of 142. Yes....me.  I suppose that’s why going through this isn't as hard because I understand fully what’s going on, even in my hazed mind. Some MS'ers are unaware of their difficulties and have problems monitoring their own behavior. Not me: as soon as I notice it I put my support system on full alert to know what’s going on and to stand in for me. Comprehension of the impact of their behavior on others may also be overlooked by some; by me I know it is hard on my tribe and my business family, but we are in this together.

I am a bit tired of having brilliant ideas that I can't execute. I need more assistants and interns to train in these life skills and wisdom/knowledge I want to pass down. It's hard because I do need a team to get things done for me. I want to do so much but can only do so much. I thank God that I'm able to be a mother to my children and be able to raise them in a multi parent household as opposed to a single parent one. In my family,  we are here together for life....life partners... a tribe dedicated to raising our young in the best environment ever. We are homeschooling, and despite my cognitive issues, I'm still able to contribute greatly to my children's education.  I've created a team that helps with academics. And I concentrated on their enrichment and cultural studies. With home figured out, I still need help with other things...living assistance. Like for instance I'm in a fog when planning meals, and that sucks because I have to waiting first others to prepare my meals.  I get ready time send off an email and it might take me all day or days even to get that done because I get "stuck".  As powerful as I am I feel helpless in my mind at times.  Even with this post, it's day three in the drafts.

 

I won't complain. I'm quite intelligent so when I'm in a fog relapse, I just take it as a vacation.  Playing gtaonline  ps3 is a great help and being a minister and volunteer life coach is easy for me to do...second nature even in the fog.    I can't let this MS beat me and fog or not, that high IQ is still there somewhere in the damaged myelin covering of my mind; just being utilized in a different way.  

http://www.gofundme.com/write-4msawareness