24 Hours with Lyme and Dystonia

A 24 hour log of day in my life with Dystonia and Lyme Disease.

I know people don't always want to hear what is going on for me halth wise. The truth is I don't always want to talk about it either. I get sick of hearig myself talk about it and tired of telling the same stories over and over. It's treing. Even so I feel that it's important for me to share unedited what goes on with my body and in my mind. If I don't tell it exactly like it is how can I ever expect people to understand or believe me.

And I do feel like some people don't believe me. I think some people think I'm exaggerating, that maybe I'm lazy, unmotivated, or trying to use my husband for some reason, or that I simply just don't want to go to work. These things are upsetting. Why on Earth would I choose to go from being super fit , active, outdoorsy, adventerous, outgoing, and having my first teaching job to faking an illness for years, sitting around the house alone doing almost nothing compared to before. It blows my mind when I get the feeling that people think it's not really that big of deal. Believe me I did not want to be this way. I would trade it in for a full time job, a social life, and the ability to ride my bike again, and have babies any day.

Part of the reason I think that people get this perspective is because I don't share everything that goes on in my body or mind with everyone. I have made what I think is an accurate assumption that people don't want to hear it all. So I wait for moments when people seem truely interested to give full disclosuer.

Another reason I think people don't "get it" is because people usually only see me when I'm having a good or at least better day. Every day , every week, is different for me. I often don't know how I'm going to feel from one day to the next and I stay home unless I'm felling pretty good for me. Or I visit with people who understand and don't expect me to feel and look good.

So if you only see me on days when I don't look sick, that's because I don't go out when I don't feel well. I sometimes don't have it in me to be social, or even get in the car to go somewhere. Other times I don't go when I'm feeling funky because it's ovbious when I don't feel good and I don't want to divert the fun getting together energy to talking about me being sick, again. I try to think of how my presence will effect the group and sometimes I just don't go so everyoe else can have more fun without the sick girl.

Anyway, this has been on my mind a lot lately as I'm feeling a bit misunderstood. I can see how and why that happens, but I also wish it didn't happen with so many people. So...I decided to write a log of what a random day is like for me. I've included as much as I could about what happens with my body and my mind. Maybe this will help people to "see" me.

Part of what can't be seen is the neurological issues I'm having. I deceide to leave this unedited so you can see how my brain is causing me to ytpe. I just can't seem to get my fingers to dowhat I want them to.

This is a 24 hour log of May 11, 2011

9:00am

• woke up in pain, used bathroom knowing that once I got up I wasn't going to be able to go back to sleep
• took meds
• tried to start dishes, but only got as far as soaking some in a dishpan of water before I needed to sit down
  
• checked email for messgaes from Dr. and to see if anyone signed up for helping me - nothing and sad about it - I had to cancel a dr apt because I can't get myself there and don't have a large enough community of supprt to be able to find a ride everytime I need one
  
• sat in office chair in pain and frustrated that the computer is slow and not working right
• Dr. called to reschedule apt that I canceled today because I couldn't find a ride, but I didn't answer the phone because I'm too tired to talk and I don't know when to reschedule because I don't have a way to get there
  
• mated the socks in the sock basket that have been sitting around for a week+ then had to rest
• sat on floor to sort laundry because standing and bending caused too much pain in my back
  
• had to pull myself up off the floor using the dresser, act of lifting basket of laundry exhausting
• while putting laundry into washer my head started shaking and moving uncontrollably
  

10:15

• hungry and ready for breakfast, but still recovering from the laundry, lay down on couch for a bit feeling overwhelmed and lonely, wondering why some people still don't believe that this is really happening to me
• even though I'm resting I feel like the insides of my body are shaking and moving and then my hea d doe sstart moving
• knees burning and feel swollen
• feeling naseaus so force eat breakfast of banana and GF toaster waffels baceuse I'm ttoo tired to make anything else remember 3 times that I need to take pills before I am able to remember long enough to go get them
• talk on phone with Dr about paperwork I need from him
  
• muscles across chest and shouldershurt and are tight from twitching
• put on more clothes because I'm having a hard time staying warm- wearing gloves in the house

11:00

• spent 20 minutes on the computer checking facebook and such before my brain got too tired to focus
• walked into living room and noticed I was short of breath and my heart was pounding checked my heart rrate apx. 100BPM no wonder I'm tired!

11:30

• went back to bed and read book for about 15 minutes then fell asleep in the pajamas I wore last night + socks, slippers, a robe and gloves and was just warm enough
  

1:30

• woken by sound of mail being delivered
• groggy, light headed, wobbly walking, and lower back pain in my spine
• replied to emails - forgot password and clicked wrong buttons several times
  

2:00

• made phone calls to Dr. offices
  

2:25

• made a sandwich for lunch - it took me 15 minutes to make a turey sandwich
• Jaw popping and face hurting from contorting in to weird shapes
  
• feeling light headed and slow
  

2:40

• finally got in the shower dor the day
• was standing in shower for at least 5 minutes before I realized I hadn't washed anything
• opened new bar of soap and smell was upsetting so I didn't use it

3:00

• shower made me so tired and worn out I went straigt to the couch and laid down in a towel for at least 40 miuntes with my eyes closed
• tried to hold a cup of water, but it was too heavy
  

4:00

• got up to get dressed and didn't have the strength to stand up had to get dressed laying down
• open window made me cold and I started twitching again
• mini melt down - worried that this twitching might never stop, feeling lonely, and like a burden on my community, especially my husband - wondering how long he's going to be able to handle this situation
  

4:45

• got up to pee and get snack, having hard time standing up straight, walking, and talking (I can think, but the words just don't want to come out)
  
• took about 5 minutes to get a snack from the kitchen
• contacted possible new Dr. who is local
  

5:00

• updated lotsa helping hands website with new dr apts.
• saton couch reclining and eating snacks
• finally put clothes into dryer
• made paking list for my stay over at my in-laws ( I need to get out of our house long enough to see if i feel better when I'm not in a moldy house and give my husband a break from taking care of me, he's tired) Had to make list or I will for sure foget something
  

6:00

• random paper work and computer stuff

7:00

• Make dinner - frozen trkey burgers and fresh veggies, had to sit sown and have my husband finish the last part
• Having a hard time getting words to come out my mouth and hsaking a lot

7:45

• Start packing the million things I'll need for staying away from home for a few days, it takes almost an hour with help to do this - leaving thie house is not something I can don on a whim, I ave to thinkabout food, water, meds, and my clothing everyth time I leave
  

8:40

• While trying to walk across the street, I'm simply to fatigued and my knees too weak so I just sit down in the road and wait till I get some stregth back and try again, but have a really ahrd tome with it and sit down again until my husbadn can hlep me get across the street - I feel ike an old lady
  

9:30

• At my in-laws wondeful home and really tired from unpacking the car and setteling in
• having a snack and then get ready for bed, but will probably read until my hands hurt too much

10:30

• ended up checking email, blogger, etsy, and facebook and seeing comments which lead me to watch James Durbin videos on you tube

11:30pm

• finally got ready for bed and did read for about 15 minutes until my arm hurt from holding the book

8:00am

• woke up with my arms, shoulders, and chest in pain
• tried desperatly for an hour to get comfortable and go back to sleep, but i couldn't get all my limbs supported properly to be comfortable enough

9:00

• finally just decided to get out of bed
• take meds
• sit on front porch in sunshine talking with father-in law, twitching and watching tiny yellow finches fly around
• will likely take a nap as I don't feel like I'm completly done sleeping

Even though yesterday was both hard physically and emotionally, I'm doing alright. I try to find humore and joy in what I'm doing and make the best of the situation. I'll be resting out at the ranch house for a few days sitting in the sun, watching the garden grow and playing with the kitties. Oh yeah and they have cable!

As always I welcome your questions and comments. Hope you are well.