How Am I Doing?

I am so thankful when people tell me that I am looking good.  It acknowledges that I truly am getting well.  I, unlike many who suffer from lyme, could not hide my illness. It was visible in my uncontrollable body movements, my twitching, my constant seizures, my inability to communicate, my need for things like sunglasses and ear plugs even inside.  I was very, very sick.

Now, a year later, I can walk normally for short distances, I can hold simple conversations, I can do my hair and make up, all of my movements are controlled.  It's been a year, I look like I use to, I should be almost better, right?

The answer is no.  I have at least another year of this battle left.  It's hard for even me to understand and accept that I still am sick enough to be disabled.  I have to constantly remind myself that I still have more healing to do. Because I struggle with accepting I am sick I am not surprised that other's don't think of me as someone who is sick.  I usually only leave the house on days I'm feeling semi decent! Most of you haven't seen me on the days I am home unable to even contemplate leaving the house.

 People don't usually ask me how I am feeling.  Instead they say things like, "You look great!", "It's so nice to see you feeling better!", "I'm glad to see you have gotten past this!"  Do you notice that none of these comments are a question, they are an exclamations.  As well meaning as people are, they are making an assumption about how I feel.  For the most part I don't mind, I am glad to be reminded how far I've come, it helps me not to feel discouraged.  Sometimes, though, I have people make these comments and I would really like to openly share with them how I am actually doing.  It's awkward though, because it feels like I'm telling them they are wrong, or at the very least I'm being a downer.

I want others to know how I really feel because I still need support and prayers.  Not only this, I have an overwhelming drive to truly educate our society what this disease does to a person's body.  Also, most of the patients with lyme feel how I feel right now.  They didn't get as sick as me, so sick that it was visible to others.  Most of these individuals look no different then someone who is healthy.  This doesn't mean they aren't miserable, they feel like the walking dead.  My family jokes about this.  We think Lyme is the Zombie Apocalypse because most days, even though we are alive, we don't feel like we are living.

I am writing this blog on behalf of thousands who are suffering and their friends and family don't understand.  I am also writing this on behalf of my children, whom we sought medical treatment for lyme as soon as we knew they were at risk.  They to, don't always look sick.  They often make comments to me that it is hard because people don't get it and they worry if they try and explain how they feel they will sound like complainers.

So, the question is, how does it feel to have lyme?  First, be advised, most lyme sufferers are also dealing with multiple co-infections.  These other infections have their own specific symptoms, but also many of the symptoms over lap.  For the purpose of this blog just consider any symptoms I talk about as being a part of lyme disease and co-infections as if it were one disease.  

There are so many symptoms, and no one patient has the same experience when living with these symptoms.  Some symptoms are constant and some come and go. The symptoms are transient, occurring in different parts of the body at different times.  I am going to explain how it feels to live in my body, although you are reading about my experience with this disease, we, as a lyme community, have significant similarities in how the disease manifests itself.  

The first thing most lyme sufferers deal with is daily pain, significant pain.  The pain can be bone pain, muscle pain, or nerve pain, or all of the above!  For me, my most common symptom is deep muscle pain.  I can only compare it to what it feels like after doing a extreme work out.  Sometimes, my arms feel like they are burning, especially when I am using my hands.  Right now, for instance, I am typing, which is utilizing my wrist and arm muscles.  My wrists both hurt, and my arms have gone past being painful to burning.  I take muscle relaxers which use to help, my body seems to not respond to them as well anymore.  My back muscles almost always hurt but some days are worse then others.  Today was a bad day for my back, the muscles between my shoulder blades are tight and painful.  I can do a lot of things now that I have improved but I still can't do things like scrub pots and pans.  If I overuse these painful muscles they become so weak that I can't use them at all.  I also, at times, have muscle pain in my thighs, but not as often.  The other common muscle pain I have can only be compared to what it feels like to have the flu.  Your whole body aches making you miserable in a way that would keep most people home and in bed.  I have learned to function despite these types of muscle pain but that doesn't mean it isn't hard.  Sometimes when someone tells me how good I look I want to scream, "I DON'T CARE I AM IN SO MUCH PAIN!"  Don't worry, I won't do that. 

Fatigue is my second most significant symptom.  It is never the same from day to day.  Some days I feel overwhelming exhausted all day and can't get off the couch or our of bed.   The thought of doing anything brings me to tears because I'm just so tired.  Imagine taking Tylenol pm a couple of times during the day and then go function.  Often I am so tired I have to sleep, otherwise my body will literally stop working.  Other days the fatigue comes in waves.  We may have moments, or even a few hours, where we can function.  If we don't pay attention to our bodies and stop when we feel the fatigue sneaking in we will regret it.  That happened to me today at church.  I didn't realize how tired I was until I sat down and the pastor began preaching.  Keeping my eyes open was making me sick.  Scott barely got me out to the car before I found myself unable to walk.  Getting into the house was a challenge but I made it to the couch and didn't move again until I had eaten and had a long nap.  If I don't rest when my body demands it I simply become unable to move.  I have seen both of my daughters experience this as well.  It's frustrating for all of us.  Rest is not an option for us.  It is literally a necessity or we will find ourselves very sick.  Often when you see me out of the house it's because I have spent all day, or even the past couple of days, in bed.  When I have to be at taekwondo in the evening I spend most of my day resting so that I will have the energy I need to get through teaching a forty minute class.  So far, I am only able to get into class about two times a week.  

Most mornings the lyme patients feels like they are waking up with a hang over.  It takes us a few hours to wake up, eat, and get ready for the day....that is if we are able to do all of these things.  Chelsea misses a lot of school due to how difficult it is for her to wake up and function.  If I try and rush through my morning routine I end up dizzy and nauseous.  I have to take multiple breaks while getting ready in the morning.  Usually I have coffee in bed, and then I watch the news for thirty minutes.  Then, I get up and make breakfast.  After eating I go back to bed and take my first nap of the day.  It is usually pretty short but it is much needed.  After my nap I get up and do my showering routine.  At this point I usually can predict how the day will be.  If I am able to get downstairs and on the couch I have a good chance of having an ok day.  If I go back to bed after my shower I usually stay in bed most of the day.  Whether upstairs or down I will next do my morning devotions.  I have to work hard to stay awake during my Bible study time, and when I am done it's time for another nap!  I then have lunch, a break, after I attempt to do something productive such as paper work or a load of laundry.  By one I am ready for another nap.....can you see the pattern?  This goes on most of the day, I feel the most energetic in the evening.  My daughters seem to feel similar.  

My last, most common symptom, is the nerve pain, numbness and tingling.  It happens in all parts of my body, right now my arms and fingers are tingling as well as my right foot.  The right side of my face is numb and I have some nerve pain in my eye.  My right foot is also numb.  These symptoms are annoying, but bother me the least.  Well, except when the nerve pain in my eyes is bad, that is super annoying and uncomfortable.

Wait, there's more!  How can I forget sensory overload?  Sound feels like it is literally inside me and pounding to get out.  At times it is painful, along with being distracting making it hard to zone in to one particular noise. Light sensitivity is also a big issue.  It is painful to be outside with out sunglasses.  I joke with my girls about how we are all vampires because we have to shield our eyes from even the smallest amount of sunshine.

Although these are my most common symptoms, they aren't my only symptoms.  Lyme and co-infections can affect every organ and every body system.  Lately, for instances, my babesia symptoms have been flaring and I am experiencing hot flashes along with symptoms that feel like I am having a heart attack.  I have a resting pulse rate that is often well over 100, and I've been blacking out a lot. This disease mimics so many other diseases and conditions that it makes the person suffering unable to function normally.

Here I sit, with only the first part of this blog done.  I wanted to talk about the emotional aspects of dealing with symptoms and then end with the spiritual BENEFITS this disease has allowed me.  Unfortunately I am to tired to write anymore so I will do a follow up blog to finish all the thoughts I wanted to share.  As always, if you have read this far then I want to say THANK YOU! It shows you care enough to want to understand.

Purchase this book and proceeds go to multiple families treating lyme disease!