Archive for Day in life of Lyme

Why Am Unable To Keep Plans When I’m Home Sick In Bed Doing Nothing? Read On…

// April 18th, 2011 // No Comments » // Day in life of Lyme, Eric's Blog

I know sometimes it’s hard for family and friends of chronically ill people to understand how we can’t make plans…or keep them, when we’re just sick at home. I did some pieces on LymeBites about a day in the life of Lyme, but have been discussing this more recently with people. Like one of my best friends said before reading my piece on LB, she just thought it was like being home sick in bed with the flu all day. But it’s not….it’s so much more than that.

As an example I’m using my medicine alarm that is on my iPhone. You may say “let’s go and do such and such at such and such a time”, but not realize how much goes into one day of just medicine for a Lyme patient.

I average about 63 pills a day, that is all dependent on my “as needed’ meds. In addition to the pills, I have 2 medications that are taken by dropper, both twice a day. I have one powdered supplement that has to be mixed with water and taken 3 times a day. I have cleanse and nutrition shakes that have to be mixed with water and taken at least twice a day (3 a day if I don’t eat food), as well as a magnesium tea that is made with boiling water, and a neurotoxin “binder” that has to be mixed with orange juice and taken twice a day, but you can’t take other medicines for 4-6 hours after taking this drink. That’s my basic, generic day. Not including pain, anxiety or nausea meds. This all doesn’t include the hour long intravenous infusions of 2 grams of super powerful antibiotics that are pumped into my heart 5 days a week. The other 2 days a week are spent keeping the line clear of blood clots, requiring saline and heparin flushes twice a day.

This is the schedule of my alarms in my med app, and I hope it helps people to understand “it’s not you, it’s me” when the timing is wrong, or I’m too tired to do something. It is a lot of work to keep up a protocol, and I’ve been making a very strong effort the past 2 months to follow the protocol as much as possible.

Daily Alarms:

10am – 13 pills, Morning meds on empty stomach, no food or drink for 1 hour after taking, or 2-3 hours before taking them.
10:30am – 20 drops of medicine from a dropper
10:30am – Powdered supplement mixed with water to be drank with 8 ounces of water
11am – A detox or nutrition shake, 2 scoops shaken with cold water
11am – 11 pills, Morning meds that are to be taken with food
12pm – 2 droppers full of medicine to be taken under my tongue and held there for 2 minutes
1pm – Powdered medicine mixed with orange juice
4pm – A detox or nutrition shake
2pm – 2 grams of IV medication infused over an hour
6pm – 6 pills to be taken 1 hour before eating or having a shake
6:10pm – Powdered supplement mixed with 8 ounces of water
7pm – detox or nutrition shake (or food on the rare occasion I have an appetite)
7pm – 1 pill to be taken with food
10pm – 2 droppers full of medicine to be taken under my tongue and held there for 2 minutes
11pm – 18 pills, Night meds
11:15pm – 20 drops of medicine from a dropper
11:15pm – one scoop of magnesium in boiling water for magnesium tea, to be taken 1 hour before bed for calm muscles during sleep
11:15pm – Powdered supplement mixed with 8 ounces of water
12:30am – Powdered medicine mixed with orange juice

All i all that is 18 alarms a day to keep me on schedule. And when you look at the times, you can see how it’s very hard for me to get away from the house for long without packig p beforehand, which can be very exhausting. Especially the mixed drinks that have to be made and carried in a cooler.

Just an educational email for those who understand, but don’t quite realize what the day is really like. Hope this opens up your eyes about me, and others with chronic illness so that you can be more understanding of those who are suffering.

Love and health to you all,
Eric

Day In Life Of Lyme

// December 10th, 2010 // No Comments » // Day in life of Lyme, Eric's Blog

I posted all 5 parts to my day in the life of Lyme.  Here they all are in order.

9am-Noon

Noon-3pm

3pm-6pm

6pm-9pm

9pm-Midnight

9pm-Midnight: Day In Life Of Lyme

// December 7th, 2010 // 1 Comment » // 9pm-Midnight, Day in life of Lyme, Eric's Blog

9:00pm-12:00am

The final portion of my day is usually the time of day I finally start to feel most like myself in many ways, but it’s also the time my body pays for the day I’ve put it through.  I’m by nature a night person and I’m at my best creatively after most people have gone to bed.  So in a way, when night time comes I begin to be torn in two directions.  Again a struggle against my own body.

At 9:30 I take my nighttime anxiety supplements, bringing me to 46 pills so far today.  After watching my shows from 9-10, I start to prepare for the night.  By 10 the palpitations are back and much stronger.  I have a full headache again, the whole head, not just in one area.  The bottom of my feet are burning and hurt, the burning goes up into my ankles where arthritis has taken over.  Even the tops of my feet hurt.  Sitting up makes the palpitations worse and causes some dizziness.

I spent 20 minutes writing in my journal, until the pain and numbness in my hands was too much (I’m old school, and still have a hand written journal).  Have to take a break from any writing or typing.

At 10:30 it’s time to take my night meds.  I take 20 more pills, vitamins and supplement.  3 more drops from the dropper bottle, 2 different powdered mixed drinks, one of which has to be made with boiling water.  In an hour I have to take a 3rd powdered drink mixed with juice.  It’s rough on my bladder having so many beverages with medicine in them to drink before bed.  After that I flush my PICC line again with saline and heparin.

By the time I finish all that, I’m back in bed and its 11 when my favorite show (Chelsea Lately) is on.  This is what I wait for all day, the 30 minutes to watch this show.  I’m physically exhausted, and sometimes have trouble paying attention to the show.  As the night meds kick in I begin to get sleepy.

When the show is over I sit up for a while to spend time on Facebook, which is a mistake as sitting up starts palpitations again, and the pain gets worse from sitting up at the laptop.  But I needed one more fix of the Facebook before sleep.

After that I climb into bed, and put on TV or put in a movie to watch.  I take a final physical inventory of the day as I get in bed.  What hurts now?  What is my current pain level?  By now everything hurts, pain levels are around a 5 thanks to pain relievers and medications.  Overall I am exhausted (not to be confused with sleepy).  I did a lot today, though it may not seem like it.  (After all I left the house for a whole hour.)  I’m anxious about my PICC line, knowing I have to get up early to call the Dr to see what he wants me to do.  I think of all the things I need to get done tomorrow, and get more anxious about not being able to do them if I have to spend the day at Dr’s and hospitals.  I have to focus on my breathing and make myself forget about all of that, and start to drift off mentally.  I finally stop thinking and just watch whatever rerun or movie I’ve seen a hundred times that I’ve put in.

Some nights sleep comes easily.  Some nights it doesn’t come at all.  Tonight I fall asleep at 1am, which is pretty good for me.

That ends my day, or all of it that I’m awake.  66 pills, several other forms of medication and mixes, 2 PICC line flushes, a PICC line dressing change, maintaining my symptom journal, keeping track of all my meds and checking off what I take, in addition to whatever “normal” life things I need to get done, and you have a glimmer of what a day is like for me, or someone with Lyme.  When one of my best friends read the draft for this she said it was an eye opener, that most people just assume it’s like being sick in bed with the flu.  People don’t realize all the additional work that goes into being sick.

Hopefully this will help give you a glimpse of what your loved one with Lyme goes through.  Help people to understand why we can be in bed all day and still not be able to make or keep plans.  It takes a village to recover from Lyme disease, and it takes a village worth’s of work to get through one day with Lyme.

To be taken to all 5 segments of my “Day In Life Of Lyme” visit http://lymebites.com/blog/category/day-in-life-of-lyme/.

6pm-9pm: Day In Life Of Lyme

// December 7th, 2010 // No Comments » // 6pm-9pm, Day in life of Lyme, Eric's Blog

6:00pm-9:00pm

After I’ve had some time to cool off from the exertion it took to take a shower, it’s time to start the dressing change.  As I said in my previous post, after 28 days my health insurance stopped paying for my IV medication and nursing care.  We now pay out of pocket, and do the dressing changes ourselves (with the help of the Dr’s office when needed).  It’s been a weekly ritual for almost 11 months now.  Mom and I get dressed up in our masks and gloves and get to work.

I dread doing this each week, but it always seems to go quick and isn’t a big deal once it’s over.  I begin by swabbing down the old dressing and area on my arm with an alcohol pad.  By this time we have prepared a sterile field on the kitchen table, with the supplies all around as needed.  Supplies include a dressing change kit (which includes alcohol swabs, a chloroprep wash, a new dressing, tape, gloves, mask and the sterile work area “cover”.

I then begin the process of taking the tape and the dressing off, trying not to pull on the stitches that keep my PICC line in place.  Once it’s off I notice the line has come out of my arm about an inch or an inch and half from where it has been the last 11 months.  I check with Mom to make sure I’m not seeing things, and she agrees.  My stress level goes up knowing I will have to spend tomorrow heading to the hospital to have it looked at and possibly fixed.  I try to refocus on the task at hand, and finish the dressing change.

I’m swabbed, washed and redressed in a matter of minutes, and return to my bed.  I lie down, pick up my symptom journal and this is what I write.  “Lower back – bad, visual hallucinations, heart palpitations when I sit up for more than a short period of time.”

I have to lay flat now because of how much my lower back hurts.  Its arthritis pain and today it’s throbbing and making the pain spread throughout my back and buttocks.  (I just love the word buttocks, I will look for any opportunity to use it.)

The visual hallucinations are like shadows in the corner of my eye.  I may think I see a bird in the corner of the room from the corner of my eye, but there is nothing there.  When I first became sick I used to always think I saw a rabbit shaped animal out of the corner of my eye.  But there was never one there.  With treatment, these minor visual hallucinations, as well as the many floaters I had, have all dissipated for the majority of the time.  Today is one of those days with no rhyme or reason that a random symptom appears.

The heart palpitations when sitting up for more than a certain period of time is something that seems to be new.  I’m just putting the pieces together today that when I lay flat, the palpitations seem to go away.  But after I’ve been up a while they return full force.  Every so many beats my heart skips and double beats, and with that it’s like having my breath taken away from me.  While my heart rate remains normal, the constant feeling of losing my breath becomes annoying very quickly.

After my dressing is changed and I’ve returned to bed, I take the 9 pills I take midday.  (Bringing the day’s total now to 44 pills.)

We have company after that, and I make an attempt to be social, but spend the rest of the time laying in bed checking email, trying to work on a couple of things for LymeBites and Lymenaide, and helping Mom with dinner while her guest is here.

By 7:30 we have eaten dinner, and I’m back to bed.  (Are you noticing a pattern here?)  The palpitations are really bad now, almost unbearable.  Not because of pain or serious problems, but because it is annoying and my tolerance for it decreases dramatically throughout the day.  My body has had enough of this day and the exertion I’ve put it through, so by now I have a general feeling of weakness and shakiness.  My pain levels are down by now thanks to the array of medications I’ve taken throughout the day.  I just don’t have any strength, so I lay in bed and rest.

At 8 I begin working on LymeBites, working on some posts and taking care of some stuff.  I do that, in between emails and Facebook, until 9 when my shows for the night come on.  The last hour wasn’t very productive, though I got some things done, but at this point in the day my attention span is very short, and I distract easily.  Sometimes all it takes is a random thought to take me on a 20 minute journey.  This is how I spend the last hour of this segment of my day.

By now I’m exhausted, my body feels a bit out of my control, my mind is starting to be easily distracted, as well as beginning to become irritable without much provocation.  This brings us to 9pm.  Next is the last period of my day, by now I hope you’re beginning to see what a Lyme patient goes through in a day.  This is just my day, so you can imagine how many other versions of this there are.  But you can be sure that every one of us has a day similar to this in trying to treat and survive this disease.

To be taken to all 5 segments of my “Day In Life Of Lyme” visit http://lymebites.com/blog/category/day-in-life-of-lyme/.  This is the 4th part, the final one will be posted in a few hours.

3pm-6pm: Day In Life Of Lyme

// December 7th, 2010 // 1 Comment » // 3pm-6pm, Day in life of Lyme, Eric's Blog

3:00pm-6:00pm

I finally leave the house with 3 errands to run, my weekly blood work to check my liver functions because of the IV medication I’m on, the post office to mail more disability paperwork, and the grocery store for a handful of things.

Within minutes of leaving the house the heart palpitations begin.  I thought it might be anxiety (the weather was awful, traffic was a mess, just that kind of day), but as has been over the past few weeks this has developed, anti-anxiety medication did not help.  At 4pm I took 3 additional pain relievers as well as an anti-anxiety medication.  (Now at 35 pills so far today.)

I returned home after an hour out and my body was doing what I call “screaming” in pain.  My lower and middle back were in spasms and taking my breath away with the unexpected shooting pains.  The pain would radiate into my thighs, where my nerve pain had jumped to a 6-7 on the pain scale.  The nerve pain was in my upper arms, and seemed to connect to the joint pain I was experiencing in my shoulders.  While sitting in the parking lot at the store I realized how one pain morphed into another, to ensure pain literally from head to toe.  (People use this expression often, but very few have truly experienced it.)  The joint pain in my shoulders turned into nerve pain in my arms which turned in to joint pain in my wrists which ended with numbness in my fingers.

To add to all this fun that an hour out of the house caused, I began to have my murderous hot flashes.  I call them murderous because I now believe menopausal women should be allowed to kill during hot flashes.

My stomach soured at the same time.  By this time, I’ve now taken 35 pills, as well as powders and liquids.  This was all followed after 2 grams of IV antibiotics delivered through my PICC line last night.  It was that time of the day when my stomach would screech HALT!!!!  And everything does…well not quite everything, but everything you’re doing halts as you begin what I refer to as the “make it or break it run”, meaning will you make it to the bathroom in time?  Or will you not make it in time, thus breaking the record of how many consecutive days one has gone without pooping themselves.

Luckily today was a make it day.

It’s now 4:30, I just want to lay down.  But I set a strict plan for myself today in order to accomplish all I needed to.  What I didn’t account for, was the ebb and tide of my daily symptoms, and how I have about as much foresight into how I will feel one minute to the next as I have knowledge about cellos.

I look at my plans for the next few hours and cringe as I look at each thing.  The one thing I know I must do is take a shower (something I can’t do often, and I haven’t been able to take a “real” shower in 10 months), and then change my dressing.

I somehow putz around for an hour or so, filling out some more disability related paperwork, answered some emails, make some calls.  The whole time just wanting to get comfy and cozy in my bed and go to sleep.  The fatigue had washed over me in a matter of minutes.  To the point that just getting up out of bed seemed like a chore I could not do on my own.  This is how I described it in my symptom journal:  “It’s only 4:30, the next 6 hours seem impossible to pull off.  I just want to sleep.  But I can’t, nor should I if I want to sleep tonight.  But naps are hard to come by, and lying in bed with nothing to occupy my mind can be dangerous, and leads to feeling “uneasy”.  I feel guilty to just watch TV or read when I’m not sure I even have the energy to put into doing those things.”

Somehow I get what I guess would be my 4th or 5th wind of the day, and drag myself into the shower.  There I spend 20 minutes struggling to wash every part of my body I can reach with just one hand, and the other hand sticking up in the air the whole time.  For someone with balance issues and problems with dizziness, the twirling in the shower like a ballerina does not help.  By the time I get out, dry myself off, unwrap my protected arm and get half dressed, I am drenched in sweat, having trouble breathing, with my heart palpitations back and in full force.

From there Mom joins the fun and we prepare to change the dressing on my arm, our weekly ritual of bonding.  Because my insurance company refuses to pay for the treatment I need, we cannot afford nursing care to go along with the IV, so we do it ourselves in order to be able to afford the actual medication.

When I began today and began writing about the day, it was enjoyable.  I was having fun.  I was excited about my project.  In this 3 hour period everything turned around.  Starting at 3pm with the first round of palpitations until 6pm when I collapsed on my bed after my shower, almost shaking from the exertion it took to take the shower.

The excitement about my project has turned into annoyance at my responsibility.  Once everything in my body changed, my mind changed with it.  Maybe this will help some people to understand how those of us with Lyme disease can go from one personality to a different one in a matter of minutes.  It’s because our bodies can change from one body to a different one in a matter of minutes.  This is just the physical aspect of it.  The fear of wondering hour to hour which person you’re going to be, and in which body that person will be can be daunting.  I’ve written a lot about Lyme induced social retardation.  This is one of those reasons.  It is very scary to say to someone “yes, I can do that with you on this day and at this time”, because we really don’t know which “person” we are going to be then.

Think about that for a while, it will help you understand the people in your life who face any form of chronic or invisible illness.  We need the people in our lives to understand it can be just as scary for us as it is for you.

Now its 6pm, it’s dark out and time to start the night.  Let’s see where the next 3 hours will take us!

To be taken to all 5 segments of my “Day In Life Of Lyme” visit http://lymebites.com/blog/category/day-in-life-of-lyme/.  This is the 3rd part, the next 2 will be posted during the rest of the day.