Tuesday, November 23, 2010

How did get to be the end of November? Pain Level 7

I can't believe that it's been almost a month since I posted here.  It's been a month of ups and downs both emotionally and painwise.  (Is painwise even a word?)  The Nortriptyline seems to still be helping the neuropathy.  I'm having problems again with my right hand "going to sleep" but at least my legs don't feel on fire anymore.  My legs are still swelling to the point that they feel like they are going to explode so I'm trying to keep them elevated as much as I can.  Fatigue has kept me from doing many things I wanted to.  Pain I've learned to work through with medication but fatigue, there is no working through fatigue. I've fallen asleep sitting in a chair and even waiting in line at the grocery store.  (When I was still working, I'd be so tired coming home at night that I'd fall asleep at traffic lights.   The last time I went to Walmart alone, I paid for my purchase and then started walking off without my groceries.  It continues to get worse and I've learned to just stay home.  Now even when fatigue is not so bad, my cognitive problems leave me sometimes not remembering making turns that I know I had to make to get where I was going.  To be honest, I worry about getting lost and not being able to find my way home.

Bill had to take his vacation that was left before Thanksgiving so he took it the middle of the month. I tried to do the things that we normally would have done when he was off for an extended time.  I was able to do that for two days.  I couldn't do it longer than that and ended up in bed most of his time off because the pain and fatigue were so bad just from trying to be a "normal" for two days.

I did get to feeling better and was able to finish piecing a baby quilt I started this summer.  I love sewing because it's one thing that I still remember how to do since I learned how before the fibro brought the cognitive problems to my life.  It gives me a sense of accomplishment where most parts of my life are very disappointing to me.  The process is much slower than it was 10 years ago because I can't sit for as long as I use to without the pain in my upper body going crazy.  Most of the time I can't see where I've accomplished much doing housework or trying to organize our paperwork or work on a budget.  The housework, if I do enough to make a difference, costs me much more than it's worth in pain and fatigue.  Fibro fog slows me down trying to do the paperwork and I get so sidetracked that I never get anything really accomplished.

The budget, well, it has even more problems than me not being able to stay on task to get it figured out and to remember to pay the bills.  You have to have money to pay them and these days, we don't always have enough.  I feel so guilty because I can no longer function as a paralegal or a secretary so I cannot work.  Even if my body could make it through 8 hours of work, which it can't, I can't learn to do something new.  That was one of the problems that came up in my last job.  You can teach me that new task today but in two or three days not only will I not remember how to do it, I won't even remember you teaching me to do it.  Social Security Disability has turned me down twice now and I'm waiting for my hearing.  They tell me that I'm right, I can't function as a paralegal or a secretary anymore but that I can be a sales clerk.  Excuse me!! I can't sit at a desk for 8 hours and remember what my tasks are and how to do them but I'm supposed to learn an entirely new profession that would make me stand on my feet that swell so big I can't get shoes on sometimes just sitting around the house.  How much sense does that make? 

I am so frustrated.  I want to work.  I don't want to be a burden to my husband,  my children, my friends or the already over burden Social Security disability program.  I don't think anyone would choose to be in pain 24 hours a day, 7 days a week for the rest of their life.  I know I don't.  I don't choose to be so fatigued and tired that I can't keep my home clean or play with  my grandchildren. 

Life was looking so good.  I finally had a college degree and was looking forward to building a career in law.  I even had people telling me I should go to law school and not stop with being a paralegal.  I graduated in May of 2008.  By May of 2009, my body would no longer function. Fibromyalgia and Chronic Fatigue had stolen my life.  One year was all I was able to practice in the field that I had nearly killed myself to get the degree by working full time and taking a full load of night classes. January of 2009 brought many mornings of so much pain that it caused me to throw up as I was trying to get dressed.  The pain and fatigue were so bad that I could barely make it in the building and many times thought that I was going to have to sit down in the parking lot and rest to be able to make it in the building.  I would fall asleep at my desk while I was typing.

I hope that I get a chance to tell  my story at my hearing when I finally get one scheduled. I'm hoping that maybe they'll realize that I didn't choose to walk away from the best job I had ever had.  That I didn't choose to put us in a position where we don't have the money to pay our bills and I didn't choose to no be able to play with my grandchildren or hold my goddaughter.

Not only has almost a month gone by without me realizing but I also got way off topic. I think I needed to vent to someone who understands and I know many of you do.  I'm off to bed now.  I've got to waked Bill up so he can put Lidocain cream across my back where I'm hurting so bad to see if I can some relief.  Hopefully, then I can fall asleep.

Till next time,

October 28 - November 1, 2010: Pain level 7 - 9

Thursday  I went to the grocery for a few things and then drove to the other side of town to pick up a part for the washer.  Two errands shouldn't do me in but it did.  Total time gone from home: 4 hours; Pain level = 7.  Friday I worked on Bill's and my costumes.  It was hard to get going Friday morning but I pushed myself.  Bill needed his costume for work Saturday and I wanted mine for the Halloween party.  Big mistake pushing myself. Time gone from home: 0; Pain went up to an 8.  I was barely functioning.   Saturday came around and I took Bill to work so we could ride to the party together after work.  I ran by Hancocks looking for the gold elastic I needed to finish my costume.  They didn't have it so it was off to Hobby Lobby to see if I could get it there.  I found the elastic at Hobby Lobby so on the way home I stopped by Walmart to pick up chips and dip for the party.  While I was at Walmart, I got a phone call to meet the guys at the lodge to pick up chairs and tables they needed for the party.  I finally got home around 3 and had just enough time to put the elastic in my sleeves and change clothes.  I was determine to go to this party because last year my pain was too bad to go.  I picked up Bill after work and we went to the party and visited for about an hour.  I was so tired and in so much pain that I couldn't fake it any longer. I was forced to break down and tell Bill we needed to go home.  My pain was at a 9 and the fatigue was so bad I could barely get out of the car and into the bed. I really thought he was going to have to carry me.   I was out of the house for a total of 8 hours and it made me so that I couldn't  function due to the pain and fatigue.  Sunday, I had to go to church because Bill was scheduled to read the Old Testament scripture and he had to work.   Right after church, I met the guys back at the lodge to put the tables and chair back up. I was so tired and hurting so bad that I stopped by a friend's so that I could kick back in the recliner and take a nap so that I had the energy to get home.  It's great to have friends that are that understanding.  Total time gone from home: 4 hours; Pain Level 8 - 9.   All day today (Monday), I've been in bed except for getting up to go to the bathroom and to eat.

I don't understand why Social Security Disability keeps telling me that I can work as a sales clerk.   Why can't they see that I can't function for 8 hours outside of the house?  I can't even leave the house for 4 hours without my pain going up so much that I can't function.