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Greetings and welcome to my Lyme disease blog, a comfy cozy (and sometimes crazy!) place for cutting-edge information, encouragement and insight into the fastest-growing epidemic disease in the United States. In this blog you will find everything from bug-killing strategies to immune system and hormone help, as well as lifestyle and spiritual suggestions for healing from chronic illness involving Lyme disease. The information contained within this blog is based upon my own healing journey and what I have learned over the past eight years as I have been diligently digging and researching my way back to a better state of health. May you find it to be a source of hope, inspiration and wisdom in your own journey towards wellness.

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Thursday, January 10, 2008

Do You Want To Give Up?

I had a bizarre thing happen today. I told God I didn't care anymore whether I would ever heal 100% in my physical body. Just as long as He would sustain me somehow. The prayer was borne out of resignation, but no depression accompanied it. This was strange, given that I have always struggled mightily to overcome my illness, refusing to accept less than a full remission from symptoms. Where my progress has stagnated, I have always devised new protocol, determined to kick the pants off borrelia and all of the other slithering parasitic organisms that conspire to suck the life out of me.

Since day one, I have refused to give up my entire young adult life to this disease. I promised myself that I would fight it, as much as it would be within my power to do so, believing that if I just tried hard enough, I could retain some of my youthful vitality, before age set new restrictions upon my ability to do things.

I was 30 years old when this thing really took me down. I'm halfway to 34 now, and as I feel my young adult years slipping away from me, I feel my expectations for a full recovery sliding away from me, too. It's not that I don't want to be well, but this hoping and trying and striving and aching with disappointment when my symptoms flare is starting to feel as detrimental to my health as the illness.

Maybe you can empathize with me. You don't want to resign, but you want to be okay with your life as it is right now. You don't want to be besieged by disappointment every time your symptoms flare. You want to find fulfillment in taking walks instead of needing to run a marathon; you want to know that life doesn't have to end just because you now get 12 hours of productive time in your day instead of 16. That maybe you don't need to be sad just because you can no longer stay up late or go dancing like you used to. Surely, you can lead a full life without all the things that you once considered necessary for happiness.

Go ahead, rebel at this idea. I do, because I don't believe that 33-year-olds are supposed to be sedentary. At the same time, I know that if I want to enjoy life now, I need to stop living for the day when my physical body will be totally healed, and find joy in the new blueprint of my life because I gain nothing by aching for circumstances to be different.

Yes, I am certain that life would be more enjoyable if we were completely healed. After all, how can your days not be darkened when you are plagued by pain and psychiatric problems? In your quest for healing, however, try to avoid getting stuck into the rut of believing that the grass is a thousand times greener in the pastures of health. Surely, it is some finer chew. But probably not as much as you think, and not so much that you should conclude that your life is worthless until you get to that place.

Make a list of all the things you enjoy doing now that you couldn't do before. The fiction novels you've been able to read, the great movies you've watched. The time you've spent helping others to recover from Lyme, and the multitude of valuable lessons that you've learned as a result of your tragedy. This will help you to cultivate gratitude for your life, and enable you to see that even with Lyme disease, life is worth living. Then, if you can find a balance between being okay with your life as you yet strive for total health, then this is, perhaps, the best recipe for contentment.

3 comments:

Anonymous said...

I have never had perfect health, not since I was 12 anyway. Don't most people struggle with health to some degree? Well maybe we are unlucky compared to most, but we don't have very much to say about it, do we?

I always eventually found that my health problems were for a reason,a nd I learned things from being sick that I would not have known otherwise. I had fibromyalgia since I was 30 (25 years ago) and I learned so much in trying to cure myself.

Five months ago I realized I had Lyme disease. I couldn't believe that after 25 years of struggling to overcome fibromyalgia I could be hit with this. What could be more unfair?

I still can hardly believe it. I don't know when or if the symptoms will be gone. I don't know why I still have pains when I had the standard antibiotic treatment. Maybe there is something wrong with my immune system that caused me to get both fibromyalgia and Lyme disease.

But all the struggles and suffering of my life have increased, rather than decreased, my faith. I always learned something from my ordeals. Fibromyalgia caused me to become very good at yoga and knowledgeable about certain aspects of holistic health. Maybe there is something I am supposed to learn from having Lyme disease.

But my faith is often overshadowed by fear, sadness or anger. Lyme arthritis is interfering with my yoga practice because there are certain positions I can't get into. And I was always so proud of being extremely flexible, and seeming young for my age. Now people see me working hard to open a door, probably thinking I'm a weak old lady.

I hope and pray it will get better. But as you say, we have to accept where we are right now, and have faith that it is supposed to be this way, for now.

I have been taking salt/c for a month so far. I hope that works.

Connie Killabugger said...

Dear Anonymous,

It is wise of you to be able to see the silver linings in the clouds of illness. What a blessing to learn so many things, isn't it?

Indeed,suffering seems to take people in one direction or the other. Either they become bitter at their creator, or they embrace what God might be trying to teach them through their trials. It sounds as though you have done the latter!

Have you ever considered that your fibro might have been Lyme all along? This is often the case. In any event, I wish you well treating your symptoms. Salt/C has helped many, I pray it will work well for you, too. I'd also advise looking into MMS. Preliminary results have been good!

Blessings to you,

Connie

Anonymous said...

Thank you Connie. Yes I did wonder if I actually had Lyme disease, not fibro, for 25 years. I saw various doctors back, then but none of them knew about either fibro or Lyme. After than I completely lost faith in modern medicine and avoided doctors completely. It never occurred to me to get a Lyme test.

However, I think the fibromyalgia I have is mainly caused by subluxations, resulting from a long ago car accident. If I work on getting my spine balanced, most of the pains disappear.

That is not the case now, with Lyme disease. Yoga might help but it's limited. The pains I get from Lyme disease are very different from fibro pains (although of course I understand that fibro is one possible result of Lyme).

The first symptom I noticed, last August, was a swollen knee. I waited for it to get better, but it just got worse. After 2 weeks I dragged myself to the emergency room in the middle of the night, hardly able to walk. This was highly unusual for me, having avoided doctors for 25 years.

The doctors told me it was probably just osteo arthritis, or an injury from yoga or bicycling! Now I know, having read a lot about it, that an extremely swollen knee is one of the most typical signs of Lyme disease.

I had 2 sets of Lyme tests -- both ELISAs were positive, and the second Western Blot was positive. I got 2 months of Doxycycline -- I don't know if it eradicated the bacteria but it did not get rid of the symptoms. I had severe TMJ pain for a week, followed by severe pain in one shoulder.

My knee is a little swollen but doesn't bother me at all. My shoulder still hurts sometimes, especially at night, and its motion is restricted. Overall, it seems to be improving very slowly.

This experience re-affirmed my lack of confidence in modern medicine (it's great for certain things, but nearly useless for many others). The doctor did not talk to me, just wrote the prescription. He didn't tell me that Lyme disease is poorly understood and highly controversial.

At first I didn't want to read anything about it, because I didn't want to get scared or depressed. I just wanted to trust the doctors. But of course I wound up reading everything I could find.

I know that some doctors continue antibiotics indefinitely, as long symptoms are still present. I decided I do not want that. Two months was enough for me, even if the bacteria were not all killed.

I saw an infectious disease specialist and I asked if there is any way to find out if the bacteria are gone. He said no, but I have heard of PCR tests, for example.

It sure would be nice to find out whether we still have the infection, don't you think?