Chronic Illness and Church Attendance

Another Sunday goes by where instead of attending church, I laid in bed.  Nothing is more frustrating to me about this illness then my inability to regularly attend church.  Despite all of the improvements I am making in my health, regular church attendance is something I have yet been able to achieve.  It isn't for lack of trying.  And my legalistic baptist upbringing ensures I have plenty of guilt.  Every weekend I have to remind myself to lay it at the feet of God and not to stress or feel bad when I am unable to get myself through the Church doors.  I spent a lot of time today reflecting why I feel so guilty for my lack of attendance.  Today was especially frustrating because a week ago when I made it almost to church only to have Scott turn around and take me home, I made a commitment to ensure I would not expend to much energy the days leading up to church so that I would be able to go.  So, what happens? I come down with a cold this week, and then on top of that woke up this morning with a migraine.

So, after lots of reflection I wrote down the reasons I feel so much guilt.  Now I will explain them in this blog and hopefully be able to finally let the guilt go.  It's absolutely silly I feel this way.  I don't feel guilty about anything else I am unable to do as much as I do this.

It's my fault
     I have spent alot of time through this illness retraining my brain so that I would no longer blame myself for the things I am unable to do.  I use to feel like a horrible wife and mother before I understood how sick I was.  I never could function in the way I saw other's function and always felt weak because of that.  I have absolutely let those thoughts go and am now working hard to help my girls to stop judging themselves harshly when faced with their limitations.  Despite all this, I still am blaming myself for not attending church.  I thought for the past year or so that it was because I wasn't prioritizing my time well.  The thought of church on Sunday was so daunting because I had stuff to do that day and if I were to attend church in the morning the likelihood of doing anything else later that day was null. It's hard because I can only do so many things in a day.  Literally, a weekday is a good day if I can do both housework and teach a taekwondo class, or do housework and do an errand in town.  I rarely can do errands in town and taekwondo, but sometimes I can.  So, by the weekend there is usually alot of errands and housework to be caught up on and I can only get caught up on non-taekwondo days.  The guilt stems from my feelings that I am placing work and chores, and kids school activities above church.  I didn't know how to flip my priorities around.  It took a few months, and Scott also rearranging his work schedule to help me on Saturdays, but we finally got a system down where I can usually have nothing to do on Sundays but church.  Problem solved? Nope. And this is where I think God is trying to teach me something.  Because despite all I have done to prioritize my time, I still struggle with feeling healthy enough to do anything before noon.  I am trying now, really hard, to let go of the guilt and blame I place on myself just like I did with other areas of my life.

I am setting a bad example for my children
     I grew up with the knowledge that if the church doors were open I would be there.  It is really hard not to have that same mindset with my own children.  Especially where they are sick too.  I worry all the time that if I don't attend church, they won't see it as a priority to set in their own lives.  If I don't go then the family almost never attends either.  Once again, it isn't because they don't want to, its because they also have serious health issues.  Scott and Chelsea work so hard during the week and really need the weekends to rest.  Jenna struggles with the sensory overload that happens at church. As much as I've worried about this, I have realized over the past few years that the girls have a strong sense of trust in Christ.  They may not have had the example of weekly church attendance, but they have definitely seen how much Scott and I have trusted God to meet our needs.

I'm a people pleaser
     One of the biggest obstacles in my spiritual growth was my need to have acceptance and praise from others.  When I was younger, if I wasn't getting positive feedback from those I looked up to then I didn't feel like I was where I should be spiritually.  It took me a long time to move past that and understand my relationship with God was what was important more so then the opinion of others.  Through this illness I am seeing that I still struggle with this.  I don't want people to think I have moved away from God simply because they aren't seeing me involved in the body of Christ.  I wonder if I am sick so often on Sunday mornings because God is still working on this area in my life. My desire should simply be to be living in God's will and I shouldn't be worrying about what other's think of me.  I also am realizing that I have made judgments of others when I stopped seeing them in church.  I've made assumptions without having any understanding of the person's situation. I know one thing for sure,  I will never make that mistake again. It is never our place to make judgement of where someone is at spiritually.

I desire to connect with others
     My biggest sadness in my inability to attend church regularly isn't from guilt, but from a lack of connection.  I feel completely isolated from my church family.  It is hard on the Sunday's I do come to church because I see all that the church body is doing and I am unaware and uninvolved.  What's worse is when I am greeted by someone as though I am new to church or just visiting.  I see people who I have known for years interacting with people I have never met as though they are all very close, and these new people have no idea who I am or that I exist.  That makes coming to church hard because I feel like I'm only looking though a window at everyone else who is actually in church and involved.  It makes me not want to come until I know I can come regularly because I want to feel a part of things and I don't know how I can feel that way until I can come to church regularly and also give time to ministry. Despite feeling this way, I will still try to come to church, I'm just saying it's another reason it's hard.

All I know, is that I don't think you can truly understand the motives behind someone's actions or inactions unless you have lived in similar circumstances.  I am taking from this a deep understand as to why it is difficult for some people to attend church regularly if at all.  I hope to someday find ways to take this knowledge and use it to be a blessing to others.  I hope that in sharing this I have at least given you a glimpse of what it's like to live on this side of the window.  There are many more people besides me who are looking in from the outside and just simply are unable to come in and join the party.

The Next Chapter, Steps to Healing

Just an FYI: my ability to read and edit what I write is difficult.  So excuse grammar or spelling errors!

I have been aggressively treating chronic lyme, babesia and bartenella for over two and a half years.  I knew it would be a long journey, but what has been most difficult is having patience and faith through the slow improvements that are coupled with huge set-backs.  When I don't improve at a steady rate I feel like I'm fooling myself and maybe I'm not really any better.  I know this isn't true, but where I live with this disease so publicly, set backs feel like failures.  

Part of the problem is my own impatience.  I start to feel better and I push myself till I can't push any more.  This always backfires on me and I end up in bed and frustrated.  I'm blessed to be seeing a new neurological chiropractor in our area. (I will post a link to his website at the end).  He has given me such simple tips that are helping and I am starting to understand how my body works and why it is failing me so badly.  One simple tip is to stop and rest BEFORE I feel tired.  What a concept.  I think I needed someone giving me permission to do this to actually get me to not run myself into the ground.  Once I understood why I should pace myself this way it was easier for me to follow this advice. I have felt so much guilt for not contributing as much to the family and the business as I feel I should be.  Stopping when I still had energy to expend felt selfish.  Now that I understand that I'm killing my endurance by the way I have been utilizing my energy, it's easier to allow myself to rest more often. It's easier because I know that by resting more often now, I will be able to do more for longer periods of time later.  So far so good, my endurance is better.  It's hard sometimes to follow this pattern of going and stopping, and I notice how much more fatigued I am when I push myself harder then I should, but I'm trying to make resting a priority and I am saying 'no' more often.  It stinks, ALOT, having to tell my daughter no, sorry, I can't make it to your track meet because I have to rest to utilize my energy somewhere else. But my eye is on the long term goal of being completely healthy, thankfully my family understands that.

I'm also changing more things in my diet.  There is so much to learn in regards to this.  The change has been on going for me stemming back well before I even knew I had lyme: no gluten, no sugar, less dairy.....ok, maybe LESS sugar, having NO sugar is really hard.  I'm getting there, slowly.  I had my gut bacteria tested, my lyme brain doesn't function well enough for me to even begin to explain that, but needless to say I have basically almost no gut bacteria.  I'm sure my gut was a hot mess before I started treatment and probably one of the factors in my quick decline.  Now, after a couple of years of antibiotics, my microbiome is really messed up.  My body isn't going to be able to do its job and keep the lyme bacteria in check if my immune system isn't working.  So, if I ever have a dream of getting off treatment I need to mend my gut.  I'm now learning all about kiefer, fermented foods, and prebiotics.  These are things that I had a superficial knowledge of, but when in treatment there is so much to learn, and I could only focus on the things most pertinent at the time.  It wasn't until recently that I was able to allow my brain to stretch a little further.  I was only able to learn this new information now because I was ready for this next step in my journey.  

So, right now my biggest goal is to get off antibiotics.  I attempted recently, but only lasted about 10 days. I'm now on a doxycycline pulse with some brief bursts of cist busters.  (Doxi drives lyme into the cist form quickly, so we are blasting those cists to allow the doxi to work) I will attempt to switch to complete herbal treatment again in a few weeks.

I'm treating bartenella herbally with success, I'm herxing which tells us the A-Bart tincture is working. The most exciting news is that I've been off babesia meds for six weeks and am still symptom free!  WooHoo!

Check Out Richard Matthews Site: http://www.neurodoc4u.com/

I'm ready to rejoin the fight

It's been a long time since I have written a blog.  I abandoned this site for awhile for a couple of reasons.  The biggest reason was that I simply needed a break.  When I reread my last blog entry I'm reminded of where I was at emotionally at the time.  I was at a point in treatment where I felt stuck.  I wasn't making improvements like I should and I was financially unable to access the treatment that I knew I needed.  Chelsea had become bedridden and completely stopped attending school.  We knew she needed either IV meds or IM injections but were unable to afford either.  Financially we were a mess.  It was the middle of winter and our bank accounts were at zero. All of this was happening, and online I just seemed to be reading post after post from other people with lyme who were not getting better and were unable to access treatment.   All of this, and the many stories of people losing their battles with lyme, I was feeling hopeless and knew that I needed to put my attention elsewhere.

One of the most import things I have learned on this journey is the importance of where your focus is.  If I am to get well I need to be paying attention to things that will pull me towards healing. I didn't want to ignore the suffering of others, but I need to take care of myself if I ever had a hope of being able to help others. So, I pulled back.  I stopped following alot of the lyme pages I use to follow on facebook.  I placed my attention on things that had nothing to do with lyme disease.  I didn't want to live as a sick person anymore.  So, my body remained sick, but my head became the head of someone who was healthy.  What I mean by that is, I set goals for myself.  Goals that had nothing to do with lyme disease.  Goals that I knew I would need to be well to achieve.

What I did pay a lot of attention to what my spiritual life, even more so then I already had been.  Over the course of the winter of 2015 things slowly improved.  More positives were happening for us then negatives.  Work became available to Scott, we were awarded grants to help pay for Jenna and Chelsea's treatments, and as the snow of 2015 finally started to melt, things continued to get better.

 For the first time, in a very long time, we felt things were finally going well for our family.  I won't blog about the details of last year, at least not today.  But, 2015 was by far, the best year Scott and I have ever had together.  Thank you to all of you who were a part of giving us so much hope.

And hows our health? Well, Scott is working six days a week and doing more physically then he has ever been able to do in the entire time I have known him.                                                                                              Jenna is slowly improving, we are in the middle of making some changes to her treatment plan, but just today she texted me all excited from the top of the Beehive in Acadia National Park! Yes, she climbed it!

Chelsea has attended school all year, done after school activities, maintained straight As and is currently slowly getting back into shape as she is a part of the spring track team!

Oh, and what about me?  Well I have learned some hard lessons about not over doing it, and am now slowly regaining my strength and increasing my endurance.  I will be blogging more about my healing journey as long as my brain functions well enough to allow me to do so.  I was ready to return to the lyme world and share my journey last fall, but unfortunately I had spent most of the winter unable to read or write well.

  We are all at a crossroads in treatment.  We are still fighting the tick born diseases, but now at the same time, are trying to repair the damage the diseases and the antibiotics to treat the diseases have done to our bodies. We are all attempting to transition to herbal treatment protocols.  Scott and Jenna are at that point now, and Chelsea and I are very close.

So, bottom line, I'm back in the saddle. I have gotten through the dark valley I was in and am now ready to not only become active in the lyme community again, but I have some pretty big ideas for my future professional aspirations as well. Don't worry, I'm pacing myself, but my eyes are way ahead of my body and I'm envisioning myself as a healthy person who is helping others.