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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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Sunday, October 05, 2008

It's Never A Good Time To Get Sick

When Lyme disease knocked me to the ground just three months after my thirtieth birthday, I thought the timing couldn't have been worse. Just when I thought I knew what I wanted to do with my life and the plans had been laid out clear before me. Just as I was entering the prime of my adulthood and contemplating marriage and family, as many thirty-something's do. Just when I had assumed that I still had plenty of years ahead of me before age would begin to limit my physical body.

Since Sept. 26, 2004, from time to time, I have felt my young adulthood being eaten away by this illness, as I move further and further from my youth. Now I'm thirty-four and my friends warn that forty is just around the corner. Indeed, Lyme has made time feel surreal--maybe sleeping the equivalent of two out of the past four years has something to do with it--but it seems like just yesterday that I was hit with this disease. Just barely out of my twenties...and who knows whether I'll get out of this mess before my body stops working anyway because of old age? Will there be any "active" years left by the time I am well? Years in which I can make up for the things that I was "supposed to" do in my early thirties, like climbing mountains or starting a new career? I want those years back, but I know I must say good-bye to the expectations of before.

If you are a Lyme disease sufferer who doesn't fall into my age group, however, you might rebuke me. Perhaps your sentiments reflect that of one of my older friends with Lyme, who once said to me, "You're lucky that you figured out you had this disease while you were young. That gives you a better chance for recovery and just think, if you heal, you still have your whole life ahead of you."

Good point, I thought, but in my envy, I wanted to say back to her, "At least you had your health when you were my age, and were able to get married and raise a family and do all the things that young people get to do."

Yes, it was a cruel thought, wasn't it? But when you don't feel good, you might as well be envious of the crack in the sidewalk.

And then there are those Lyme disease sufferers who have been ill ten, twenty, or forty years--perhaps their entire lives. So what am I complaining about? At least I got to have thirty years of "relative" health. At least I got to travel the world in my twenties. At least I am much better off than I was four years ago.

What if you get Lyme disease as a kid? Some would view that as better than getting Lyme as an adult, because kids can often recover faster and more completely from disease. And they really still have their whole lives ahead of them, whereas an older person does not. But is it better to get Lyme when you are older, after you've had two or three good decades to establish a career and family for yourself? At least a couple of decades is better than nothing, right?

Actually, I don't think it's ever a good time to get sick. The envious rationale that we give to others as to why they are better off than we are is really nonsense. Whether you are twenty, forty or sixty, you may feel as though the best years of your life are slipping through your hands because of Lyme disease.

Life is time, only time, and we get so very little of it. Perhaps this is part of the reason why we despair about Lyme disease. If we lived to be a thousand years old, perhaps we wouldn't mind losing a few years to inactivity. But when you're forty and have lived half of your life in sickness, you wonder if any of your remaining forty will be spent in activity and health.

On the other hand, we often hear that happiness is more a state of mind than a product of circumstance and hence our "Lyme" years don't need to be wasted years. Activity does not equate to a worthwhile life, and we can use this time to learn and grow and find joy in other, new ways of being.

Sometimes I am encouraged by the fact that I believe in an afterlife, and that in reality, my spirit and I will never die. When I can frame Lyme disease through the lens of eternity, then I understand that a few decades of a life relegated to inactivity is really nothing. I mean, if I'm going to live for a gazillion years in Heaven, then sheesh, I should enjoy my quiet days on the sofa, shouldn't I?

And here's another secret, one that I remember in moments of sanity and gratitude...It isn't just the sick that feel as though their lives are slipping away from them. Many "healthy" people, those super-active folk who can manage a million friendships and careers and sleep only four hours a night, often feel as though their lives are a waste, too. That their years are falling from their fingers like balls of mercury (have you ever seen how fast mercury is? No, don't go breaking a thermometer or else you'll have another problem to contend with...) ...and that what they are able to do is never enough or what they want. The feeling may be exacerbated in the sick, but it also exists among the most energetic and most productive.

No, it's never a good time to get sick. But it's always a good time to re-frame time and the way we look at life. Maybe for you, as me, time is eternal and death is just a door into another life. Maybe we can be content with that thought, or at least find peace in a state of relative non-doing, and in a life that is worth living, even though we can't do the things that other people our age do. Even though we can't fulfill the dreams we had pre-Lyme; even though we hurt and are tired.

Perhaps we can re-write the expectations that we once had for our lives and give up the idea that our Lyme years have been wasted. In hindsight, we may find that they were the most "productive" in terms of what they taught us. We can dream new dreams, make new plans...but whatever we do, we shouldn't look around us with envy at what the "healthy" folk our age are doing with their lives. And we need to stop imagining that we are worse off than our fellow Lyme disease sufferers, just because we have lived with illness twenty years longer than they, or because we got sick when we were fifty instead of fifteen. The chew isn't always greener in your neighbor's yard, even though from a distance, it may seem so.


monkey girl said...

I get what you're saying. When would any sane person say, ok, this is a good time to be sick.
I do think I have chronic lyme for a reason, and it certainly makes me reflect more about my life.
Unfortunately, since I've been sick for so long, 10+ years, I'm having a harder time imagining my life free of lyme. I feel I have to be realistic and consider that I may never be free of this disease, and at best, maybe I can kick it into remission.

Jenna_Smith said...

Hey Connie - I agree that there is never a good time to be sick, and I would imagine you might relate to the fact that for many months the disease is about grieving your own death - the end of life as you once knew it...the question is...are we better people after Lyme??


Connie Strasheim (aka Killabugger) said...

Hi Monkey Girl,

I think reality can be good in that it keeps us from getting our hopes up and helps us to be content wherever we are at in our healing journey. I think remission is an excellent goal to aim for, but however "far" you get, I pray that your circumstances would leave you at peace. I can't relate to being sick for ten years, but it seems that the longer I have symptoms, the more I think that "wholeness" resides in the spirit more than in the body. Thanks for sharing. :)

Connie Strasheim (aka Killabugger) said...

Hi Jenna,

Thanks for your comment (and photo!) I wish I had more people's photos so that I could put a face to all of my Lyme friends out there.

I stopped by your blog-you are sharing some great info. on there. Good job!

I agree (and actually did a post about this) that this disease causes us to grieve "life as we once knew it." I think we can become better people after Lyme, if we allow it and are open to growth. Illness, I think, can do one of two things to people: either it can make you bitter or it can make you stronger and "better", depending upon what we choose to do with our hardship. What do you think?

Thanks for stopping by.

Rebecca said...

Hi Connie,
So many of your articles here have really hit the nail on the head. This is my first time writing you although I've wanted to write to you many times. I've had (chronic) Lyme for 3 yrs. I'm 38, single and have 3 kids.
I have spent quite a bit of time wondering "Why did I get sick now, it just doesn't make sense?". Right before I got sick I was planning on going back to college. It was good timing b/c my youngest was going in first grd which meant all my kids would be in school full days. I remember taking the kids school shopping a few weeks before and feeling so aweful I thought I was going to pass out. That feeling got worse over the next few weeks to the point I could hardly fuction at all. Over a short period of time my oldest basically took over my role. She was 16 yrs old at the time and helped my younger two,they were 7 & 9 yrs at the time, with homework, baths,did the grocery shopping, dinner etc. She's a tremendous help! Thoughts and hopes of college were history. I was busy trying to walk around my house with my eyes closed b/c it hurt too much to open them. The pain was unbearable, I thought that I litterally may die. In the middle of the night I'd be crying from the pain and from the thoughts of my kids finding me dead. What would they do! They would have no parents! What would the rest of their lives be like. I'm not afraid of dying but I'm afraid of leaving my kids like that. I am doing better than those early days of Lyme, but it's always letting me know it's there by the irreversable damage, like confusion, memory loss, comprehension problems, chronic fatigue & pain and now mono.
So why get sick now when my kids need me,It's definately not a good time. I used to be active and in shape energetic and all! We were always out and about, camping, hiking, yard work, the beach, the library, gardening and always up for an adventure. It's painful to see that my younger ones are forgetting all those special things we used to do. The big adventuers we have now is finding my keys (b/c I never can?) to go get some milk...then actually coming home with the milk is no adventure it's close to a mirical, considering by the time we get in the car buckled up and out of the driveway I can't remember what it was I had to do, but I keep driving anyway after all that time we put into this milk adventure I feel we should continue on our way somewhere? It rings a bell when the kids call out "MOM you passed the milk store!" OH Yeah Milk, and they get a little treat for being such great helpers lol.
So why get sick now and not when I was a child when horrifying things were being done to me or back when I was a teen and tried suicide a few times-why didn't I get sick then. Why didn't I get sick when I was in my early 20's having surgeries and being treated for advanced stages of pre-cancer. I have 3 super kids and then get sick? I feel as if my life really started when my kids were born. Why get sick when I worked hard to overcome so much from my past and now finally have so much to live for. What is the piont? Please don't mistake my "why's" for feeling sorry for myself, I don't mean it like that. It's just that Lyme takes so much away from my kids. It's all quite interesting... in some ways I'm more "strict" with my kids b/c I want them to know life's rules clearly incase something happens that I'm not around for them and in other ways I'm so much more at peace just watching them play or coloring with them or just having a movie night in my bed together. I know I'll never be the person I was and have accepted the death of her but accepting who I am now is much different, another whole process I guess. I should probably go read your "Wounded Healer" article again huh lol.
Oh I vented some or rambled, sorry. But I do appreciate your time very much. Thank you.
Take Care,

wallace said...

If you go to my profile you can see my terrible passport photo of myself.


Connie Strasheim (aka Killabugger) said...

Hi Rebecca,

Thanks so much for sharing your story. It sounds as though you have really lived through a lot of hardship. I can understand why, when your kids were born, you felt as though finally you could make a good life for yourself! I could not imagine trying to raise children with this illness, but, as others have told me, you do what you have to do, right? On the other hand, they are a great blessing, aren't they?
I pray that you would continue to improve in your health; it sounds like you have gotten somewhat better. Keep hoping and praying; I do believe God can work miracles!
Maybe one day you will be able to go back to college and do those "active" activities with your children that you haven't been able to do for awhile.
Hang in there and thank you again for sharing!

Connie Strasheim (aka Killabugger) said...

Hey Wallace,

Thanks for the photo!
It's great to be able to put another face to the name of one of my blog readers.
If I may say so, you don't look sick!
(But where have you heard that before? :)
Take care!

Anonymous said...

My daughter is in treatment. My son should be tested. I just do not have the energy to deal with it right now. I am 47, and I know I am grieving my own death, as Jenna says. I am also grieving life with my children and the life I could give them, as Rebecca is saying as well. I posted a while back to my local support group and the moms who have been through this longer than I have told me what strong and compassionate young people their children have grown into. They remembered the good times when they were "down," the times when they did spend days in bed playing games or watching movies with their children. My personal dimenma is that we homeschool and our way of life has been going and doing constantly.. day trips that last all day, and I sometimes despise this illness and myself for being ill... for taking that away from my children...maybe if I were stronger. They are suffering a loss as well. My daughter had her first herxheimer reactions this past month, and it was scarier for me than for her because I know how bad it can get, and she is so young. I know we have caught this earlier than we would have had I not given her the few drops of samento to which she developed a herx reaction with hives and sores on her back.. which led me to have her tested. I see my life, this age and time of my life being taken from me, then I see her and hear of other children, worry that I should be testing and treating my son, and am completely blown away by the idea of it. I hope they heal better and faster. Are we better people after Lyme? Lyme is teaching me a lot, right? I would love to be able to learn these lessons with more joy and less fear without Lyme... or perhaps without this air of doom that seems to accompany Lyme disease for some of us. My husband would be "blissfully" taking his abx and moving "blissfuly" on... few problems at all (few problems pre Lyme diagnosis as well and tested for me), except the ones I present him with my worries and with my struggles. So I grieve what I sense is a personal deficit as well. What makes my body and heaven forbid my mind weaker than his that I should be so sick. Robin

Anonymous said...

Rebecca, if you come back and read these comments... I also worry about what will happen if I am gone and I purposely am making my kid more independent than I would have otherwise at their ages (8 & 11) because I fear I will die and leave them. Your children are going to most remember the times you are at peace... watching them play and coloring and watching movies together.. the times you are connecting. Some of what mom can do has changed. Little things can make a huge impact on a child. I can tell when I am pre-occupied for whatever reason.. pain, worry, too much research for a cure (for me).. and then when I tune back in and just listen to a new thought one of my children has to share or share a laugh at something silly.. little gifts that somehow are very big things to children. Robin

Connie Strasheim (aka Killabugger) said...

Hi Robin and Anonymous,

I just wanted to chime in and comment a bit on your posts. Robin, I agree that with children (as perhaps with adults, too), it's the little things that count. While there may be times when your kids would like to do something with you that you can't--ie, an excursion to the zoo--and there may be disappointment surrounding that, what really matters is connecting with your kids in meaningful ways, because this is what develops their character, more than any activity. And while they may miss out on certain things, they may also become, as you said, Anonymous, more compassionate people as a result of having witnessed your hardship. And there is no greater gift in the world than that! This world is in such need of compassion, and I believe that God uses all of our experiences for our good and the collective good of mankind, if we allow Him to (of course I'm injecting my own personal theology into this, please disregard my comments if they don't resonate with you). Also, I think the fact that we live in an activity-based society doesn't help matters. It is good to be able to "do" but there is much value in simply "being" and being together.

That said, I am not a mother and cannot imagine how difficult it must be to want to give your children "more" and not be able to do that.

It would be nice if we could handle Lyme disease with greater grace, but fact is, when you hurt and are tired, it's hard to put on a happy face and maybe we shouldn't be trying so hard to do that. Perhaps more realistically, is simply accepting where we are, who we are through this, and trusting that one day, the gifts of Lyme, the lessons and gratitude and whatever "good" may come from it, will be brought forth into our understanding at the right time.

I wish you both well with your children. Truly anyone who can raise a child at all through this deserves an amazing reward! I know, you do it because you have to, but you are still doing it.