FATIGUE AS A PROCESS, PART 1

Fatigue can be measured in many ways.  Mostly, though, fatigue is a subjective experience, and such, is hard to measure in an objective analysis.  What I want to impart to you is the fact that, in many cases, fatigue is not an object to be measured at all, but a process that involves many facets of living.

I attended the Functional Capacity Evaluation (FCE) ordered by my insurance company in January 2011.  I found it very interesting, and educational.  My evaluator was very nice and patient with me, and explained that I was to do my best, but that I was to stop myself if I felt I could not do something safely.  I explained to him that it was not in my nature to stop myself if I felt I could go on.  I did try to really pay attention to how I was doing things and do each activity properly without too much pain.  It was harder than it looked! 

At the end of the evaluation, although I wanted to ask questions, I waited until I received the report from my doctor.  I found the report fascinating.  I was amazed at how weak I was, yet also surprised that we did not do more with the sedentary activities, as that was the final word on the evaluation.  The FCE focused only on my muscular abilities.  I have never said I cannot walk, although I do use a cane at times and like to try to keep active.  I have never said I cannot lift at times, or stand for a bit.  The FCE gave what I consider to be a very accurate, yet limited estimate of my abilities.

I say this is a limited estimate because there is so much more to fatigue than muscular activity.  If I sit, for example, at a desk with a computer, within 15 minutes, my shoulders start to hurt, the tendonitis in my wrists acts up, my lower-mid back begins to spasm, and my legs begin to stiffen.  If I sit for 30 minutes or more, I must get up very slowly, as straightening my legs and lower back can be very painful. 

I do sit for an hour or so in my recliner, sometimes, but there I can move my legs often and I usually adjust the way I am sitting every few minutes.

Fatigue of the muscles from moving is harder to measure when I move just to keep the muscle spasms and stiffness in check.  When I worked as a clerk, I could get up and move as needed and sit as needed.  It worked for me for years, and I loved my job.  I could take breaks when I needed, visit the restroom as often as necessary, eat or drink as needed, and still do my job.  In fact, I battled fatigue for years with medications and by altering my daily schedule to fit my needs.  Then I got sick.

When I stopped working, it was with absolute conviction that I would be back to my job in a few days.  I just had a viral sinus infection and a bacterial ear infection.  I had medication, and would be back in no time at all.  In my family, if you are not dying, you are fine.  I was fine.  I had just worn myself down enough that I could not get up, and these infections were the cause.

That is what we all thought.  Three weeks later, and against my doctor’s best judgment, I stumbled back to work part-time.  Trying to do a 40 hour a week job in just 20 hours a week, with little to no help, was stressful, but I was determined to knock myself back into shape and I kept going.  Four weeks later, I went back to my doctor.  She said that I was over my infections, but that I was to go home and go to bed.  I did not tell her that basically, that is what I had been doing for the last several months.  Instead, I said, “Ok, so I will work and sleep, and that is it.”  She said, “No. You go home, go to bed, and don’t go to work.”  That was the end of it.  She wrote another note to work saying that I was not released to work again until further notice.  

Colds and other speed bumps...

I know it has been a long time since last I wrote, but I have been so busy!  Not only am I still thinking about cleaning the big garage for a sale before the Walk MS put on by the National Multiple Sclerosis Society (I have a team called Motivation and we walk the Olympia, WA walk) but I am also thinking about cleaning the little garage so we can get people over here to finish insulating it.

Meanwhile, I have this Long Term Disability (LTD) claim that has been closed, and I am trying to get people to write letters, and I am trying to organize all my SSDI claim information and write a letter to the LTD people to appeal their decision to close my claim.

I also have to do my taxes, which are so different this year due to my change in work status.  And I have a cold.  I keep sneezing!  I don't know if I have ever sneezed this much in a whole year!  Wash the hands.  Wash the hands.  Wash the hands. I have been sneezing into my shoulder, so the shirt needs to be washed again, too.

I know that doesn't sound like much, and it would not be a lot to do for one person with no job, but in my case, there are times that getting out of bed and walking all the way to my recliner is tiring.  I have been going to new doctors and getting new opinions about my situation, and it is really quite interesting.  Each person has a different take on MS and what can be done to help alleviate symptoms, and some of the ideas work for me, at least for a while.  Next on my agenda, coming up in just two weeks, is an appointment with a neuro-opthomologist.  Now that is a mouthful!  Anyway, I am really looking forward to that.  My eyes don't always focus the way they should, and sometimes my left eye feels very "gummy."  It will be interesting to see what is MS related, and what might just be age!

Ok, it is bedtime now, so I guess I ought to get to it.  Feed the cats their bedtime snack, make my tea, shower... so much to do just to get ready for bed!

What's up with all the Paperwork??

Ok, so just yesterday I got a phone call from my long term disability claims rep.  He says my claim has been closed because some people I have never met looked at a report written by a guy who spent three hours with me one day, and they have decided I could, in fact, work at least part time at a sedentary job.  Well, I don't know about you folks, but sitting around on my rear end all day makes my rear end excruciatingly painful, and makes my legs jump like Mexican Jumping Beans.  Also, as you can see by my blog, I can't even do computer "work" like writing a blog every day.  Some days and some weeks are better than others, of course, but MS is not, by definition, a constant!  Especially when one has a worsening form of it.  Even relapsing-remitting (R/R) is defined by more relapsing and less remitting over time.  


So now that I have finished with months of paperwork to show Social Security I can't do months of paperwork, I have to start all over by appealing the long term disability claims-people's decision that I am, in fact, capable of work!  It seems this is very similar to trying to get a loan.  The best way to get a loan is to prove you don't need it, and if you can't show that you have enough money to "cover" the loan, they won't give you the loan!


Ok, so I have been sitting here for a little while now, and my derriere is starting to hurt, so I must get up on my wobbly legs and head for bed before my legs start jogging to China without me.  I hope all is well out there...


Good night.

 

New Tests and other things...

Hey folks!  Just thought I would quickly share that I am finally getting some testing done!  I went in for a Functional Capacity Evaluation a few months ago, and now I am scheduled for some sort of Cognitive testing and I have an appointment with a neuro-opthomologist.  I am really excited about all of this!

The Functional Capacity Evaluation (FCE) showed that I do really have excessive fatigue, but the guy doing the report was a little wishy-washy as to whether he thought I could work a 40-hour week.  Of course, I "completed" the 3-4 hour eval. in less than three hours, if you count the time it took to fill out the intake paperwork, and I wasn't good for anything the very next day, but hey, whatever!

The cognitive testing is very exciting to me because I feel I have lost some functionality in my brain.  I don't remember things like I used to.  I can't compute math problems in my head, and I used to be very good.  I have trouble finishing my own sentences.  (This blog helps that, as I can sit as long as I need to to find the word, or I can ask someone, and you don't know if I had trouble or not!)  Anyway, this will give me a baseline from which to work later on.

The neuro-optholmologist will look not so much at my ability to see, as what goes on between my eyes and my brain.  She (it is a she) will look at the physical realities of the eyeballs as well as the physical and operational properties of the optics and the nerves leading to the brain.  As you can see, I am not really up to speed, so to speak, on what is all done, but it will be fascinating.  This and the cognitive stuff don't happen until March, so it is a few months away, but I am still excited.  Stay tuned to see what comes of it all!

Days and Nights

Days and nights blend together when you don't work.  When you have little or no purpose in your life because you are too busy resting and being tired.

Wow, that sounds depressing.  I know it is true, too.  Days and nights do blend.

I have always been a night person.  I have always wanted a nap around three in the afternoon, and I usually feel like staying up until about three in the morning.  Ok, maybe just until one or two, but I have always been like this.  Thus, the days and nights really do blend together for me.

It is kind of strange because I feel guilty about sleeping so late and staying awake so late.  Now, here i am in a place in my life where it doesn't matter when I wake sleep.  Yet I do feel guilty.  My schedule, if I allow it to flow naturally, does not sync with anyone else in my life.  I wake up and cook dinner for my roommate when for me, it is breakfast time.  Weird.  Then I shower and get ready for bed when really, all I want to do is go clean the garage!  Yeah, who wants to clean the garage??  But it is true.  The only energy I ever have seems to show up between ten and midnight.  And it doesn't matter if I get up at eight or noon, or even after.  My only possible hope for a "normal day" is if I get to bed by eight pm.  And I don't do that very often, as my roommate does not get home until seven or eight.  And I cook the dinners!  That is my one and only "job" here right now.

So it is midnight, and I am up writing.  I need to find some way of bringing in some money, as I am responsible for more bills than I can pay right now, and if anyone has any suggestions, that would be great.
I think my calling is to work with animals and/or people in some sort of ... I wouldn't call it counseling... but I have a gift of sorts with animals and people.  I know things.  Animals seem to really understand me when I speak to them...  Now I am sure you think I am crazy!  Well, like I said, it is past midnight.  :)

Blending days means it is time to find purpose.  I have been working on that.  Right now, my purpose is to figure out insurance.  That has hardly seemed a purpose for getting out of bed!  Still, what must be done, must be done.  Does one go for State Health, DSHS (ugh), and Individual policy, or COBRA?  It is hard to focus on each and understand how each is similar and how each is different because they all seem to use different terms.

I also have a garage to clean so we can finish insulating it, a pole barn to clean so we can have a sale in it (for my National Multiple Sclerosis Society Walk team fundraiser), five acres of "yard" to clean, landscape, plant things, etc...  I have a whole life's worth of purpose!  And I get to cook Paleo Pizza tomorrow for dinner!  

Social Security Disability Insurance

That is not an easy road, getting approved for SSDI.  I did it, turning in my paperwork in November, and getting approved before the end of January.  WOW!  From what I have been told, that is almost unheard of.  In fact, statistics say I should have been denied at least once, most likely twice, before being approved.  I can't send enough thanks to advocates at the National Multiple Sclerosis Society for helping me.  They gave me more paperwork than I ever would have thought wise, let alone necessary, but after three months or more of carefully thinking about, writing out, and gathering information, here I sit with guaranteed income (however small, due to my relative youth) for the rest of my life, or at least as long as I am unable to work!

Well, today my housemate and friend who is somewhat of a caretaker, has told me I am to schedule some kind of exercise every day.  Wii Fit, stationary recumbant bicycle, of walk to the end of our 600+ foot driveway, every day.  I know it is a good assignment, but getting up at 1pm every day to rain makes my comforter look that much more inviting for the rest of the day!  Ok, if and when I do take all my meds, I do feel more like moving.  *sigh*  I guess I will just have to keep up with the meds.  I just hate taking pills, and I have a lot of pills to take!  That reminds me, time for shot... more later. :)

An Example of Generosity and Faith

Wow.  I went to a massage therapist yesterday.  I had been in a car collision - someone hit my truck on the driver's side and I had been thrown back and forth sideways.  Anyway, I go to this massage therapist to help with the last of my care, and my mind is on the fact that I don't have much money, I don't have Personal Injury Protection (PIP) coverage on my insurance, and this massage therapist will excuse me from paying until the other driver's insurance will pay (at the end of the claim period).  Well, going to my appointment, I find this therapist is working out of her home.  The home, as I come to it, is an older mobile home.  I walk in, and it is not fancy.  I go into the massage room and it is not a fancy massage bed set up in what looks like what should have been the master bedroom, but has been turned in to an office, with the massage table in the middle.  A bit deeper into the conversation, I learned she is unmarried at the time, unemployed, just restarting massage, just started taking insurance, has put herself through online school but cannot find an employment, and is supporting five children on nothing but child support.  She let me walk out, without paying.  She did not ask for payment based on her faith that things would all work out, that she would be paid in time.  I promised her more than once I would make good if the insurance company did not, but she kindly blew me off.


I wish the lesson she is teaching could reach us all.  Have faith in our fellow humans, and even more faith that no matter what, it will all work out.

Howdy folks!

Howdy folks!  This is my first ever try (ok, second, but I can't find the first!) at a blog.


I want to tell you that I am a person with Multiple Sclerosis.  I was diagnosed in 2003, and as of March 2010, I have been off work.  In May, I tried to work for a while part time, but it didn't work out. Since May 12, 2010, I have been living on nothing but disability.  It sucks.  Really. 


I don't understand people who choose to live on disability, or on welfare, or whatever.  I don't think most people actually CHOOSE to live on the government's dime (isn't that kind of what the government does anyway?  :)  Anyway, I could earn more if I was able to work, but I am not.  I grew up in a family that taught me right from wrong, pride in what you do, and most of all, if you're not dying, you are fine.  So why am I no longer working?  And most of all, why am I on disability??