personal journey with lyme disease

I am Kathi; I am not Late Stage Lyme December 9, 2011

Filed under: Uncategorized — iammorethanlyme @ 7:22 pm

So onto the next part – where to start, symptoms, how many doctors did it take to diagnose me, what has been taken away because of this disease, how hard it is to stay positive?  Well as Lyme makes it hard to focus on any one task at hand, I think I’ll write about what a normal day/night is like for me.

Ahh, morning – time to get up for good as I have already been up two or three times as it is very hard to stay asleep for more than two or three hours due to cramping, spasms, and general body pain.  The first trick is getting up!  Sounds simple; throw your covers back and swing your legs over the bed – piece of cake.  I wish…First I have to remember that I am in bed (which is up against the wall with my walker on the side where I get out of bed).  Then I have to get my limbs to remember where they are as there is something called “disconnection” with severe lyme where I believe my legs are crossed, but they are not even touching.  It happens with the arms, too.  Okay, I’ve got my bearings, but because of a reactive arthritis that affects my abdominal wall, sternum and ribs, I can’t just sit up.  I have to roll, scrunch, push and whatever else till I get to the edge of the bed.  Then I slowly slide my feet and legs down the side of the bed till I touch the floor and reach for my walker.  Now I have some sense of balance, now I am on my way!  (Out of the bedroom)

Once I have made a journey to the bathroom and put the dog out,  it’s time for the first round of pills.  Easy enough.  Next, I cheat and make coffee as that is the one treat I allow myself on a very strict biotoxin elimination diet I have been on which only allows corn for a starch.  While enjoying my coffee, I go online to check emails and Facebook.  This is how I stay in touch with many people and have made many friends through Lyme connections and then their friends.  It’s fun to say I have friends in Prague, Sweden, Portugal and yes, even New York!  Just kidding to my New York friends.

I try and keep it to an hour online which usually stretches to two!  Now I’m behind my own schedule of taking a shower.  Another long process.  Safety bars on the tub wall, a tub bench and the walker right outside the shower.  Everything seems to take so much longer. I have to remember how to take a shower!  I’m used to sitting now and that’s okay because if I’m standing and close my eyes, I fall backwards and that’s not a good thing.  After the shower and drying off, I need to lotion any rashes I may have at any given time.  Then it’s back to my room to dress and I’ve done it before 11 o’clock!  Sounds ridiculous doesn’t it?  Well it is.  Now I need to take more medication and eat something.  How many sandwiches can you make on a corn tortilla?  How many salads can I eat?  I guess I could have some corn pasta.  Well, it’s noon now.

Now I wait to talk to my sister, Donna, if she’s working and usually at least one of my daughters.  Could be I’m making physical therapy appointments, getting record releases for my next visit with a specialist or calling to get my hair cut and, of course, letting our senile dog in and out.  She’s as bad as me!  Wow it’s 1 o’clock and I haven’t done the dishes, put on a wash, tried to write an errand list or cleaned off the endless papers that magically appear on the kitchen table.  But I’m too tired to think straight.  So I need my nap.  I try to nap in the recliner as I don’t want to go back to bed as I get confused when I wake up and am not sure what time of day it is or if it is nighttime.  The recliner saves me that confusion.  I put on some music and fall asleep for 1-2 hours.  I let my body decide how much rest it needs.

Dave doesn’t get home from work till 3:45 pm so I try to get a whole bunch of little things done when I wake up so I feel like I haven’t wasted a whole day.  There is no pressure from Dave – I do it to myself – always have and always will.  If I have physical therapy, it’s back out the door for Dave as I don’t drive.  He drops me off at 4 and picks me up at 5.  Now I feel like I’ve almost made it through another day.  Just dinner and pills, then time with Dave watching TV or talking.  Dinner can be a hassle as I can read a box of instant rice four times just to make it. TV time –  I love sports luckily as I don’t have to think during them.  We watch movies at home as I can’t handle the extreme noise surrounding me in a theater.  The crowds don’t help either.  There are so many sensory issues.  I actually wear sunglasses 24/7 due to light sensitivity, so my guess is that 3-D movies would be a nightmare!

Occasionally we venture out to eat, which is a nice change of pace and there is always a salad or fish dinner I can eat.  But that’s usually enough of an outing and back home we go.  We might work on a crossword together as he knows I always loved doing them.  Sometimes he falls asleep on the couch which is to be expected with all he does for everyone – not just me.  Unfortunately the couch has also become his bed as I move too much and moan or talk in my sleep.  He knows there are nights where sheets hurt my body, so he doesn’t want to cause me any pain, but he also needs to sleep as he is the one working.  So it’s a very exciting life we lead!  I try to make it till 11 pm, put the dog out one more time and take my last set of pills for the day.  Now it’s off to bed where I hope to sleep and wake up to start the fun all over again!


One Response to “I am Kathi; I am not Late Stage Lyme”

  1. Wow Kathi, i, as your cousin, still don’t really know how much you go through on a daily basis. Please keep blogging so more and more people become aware of this horrible disease. I love you so much and am so proud of you!!!!!


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