Sunday, March 13, 2011

No One Want's To Talk About It

I am choosing to write about a very controversial topic because its very common in the Chronic Lyme Disease community and I think its something that needs to be talked about.

Many Lyme people die each year from suicide. It's such a hard disease to deal with-you are on so many meds, you feel like crap a lot of the time, not many people understand, you really have to know where to look to get the support you need from others that are going through the same thing, even close family just don't understand and their helping words or actions may makes things worse even though its with good intentions, meds can really mess with your brain because of die off, you are so dang emotionally and physically exhausted, you morn the loss of the life you had before Lyme, it seems never ending, it's a very long process and can take a long time before you are well again, you feel bad that you are always having to disappoint your friends and cancel on get togethers or all you can do is sit and watch movies or chat because you are too drained to do anything else, it is SO expensive to treat Lyme and it causes a huge burden on your family, you feel like your job suffers and feel guilty, I always feel like I am letting down my daycare families even though I still do almost everything I could before just slower, you are totally exhausted from working a full week, you just feel like you can't do it anymore and feel maybe it would be better if you just end things so you aren't a burden on those you love anymore.

What do I do to get past those feelings—I make sure I am around a friend or my husband when I am feeling low or lonely, I call my therapist or make an appointment-she is awesome at talking me down and good at playing the guilt card when it involves abandoning my child and husband, call a Lyme friend, go to a Lyme support group, post on my on-line Lyme groups, call my Lyme doc, go to sleep, cuddle with my pet piggie-animals are so therapeutic, cuddle with my daughter or husband, make sure I am around my child-if I am around her I am safe, leave the house and do something fun with someone, go out with my girlfriends that understand and are really supportive of me, write in my journal, detox using the sauna or epsom salt bath to get the toxins out, go to a movie, have a written plan, and if really bad then check myself into the hospital. I haven't had to yet and hope I never have to.

What have some of my Lyme friends said that help them-Get neighbors and friends involved, consider going to a DBT(Dialectic Behavioral Therapy) Group, remember you are a hero to at least somebody, have a written plan, at least once daily (& sometimes several times daily) do visualizations, seeing yourself healthy & beyond the severe challenges, doing what you enjoy and doing what you feel you were put here on earth to do, see yourself thriving & not just surviving, having family support, meditating, applying your faith, and distractions are all therapeutic.

We have to fight this nasty disease, it can't win, we can't surrender to it, we have to remember we aren't alone and others are going through the exact same thing, we just have to reach out to them and others. We are much healthier than we would be without treatment and we are on the right path, we can't dwell on the past or the future, we have to focus on the now and focus on making ourselves as healthy as we can for now so we will have a bright and healthy future ahead of us.


  1. In the beginning of my illness, before I started treatment, my pain was so bad every day that I begged to die--every single day! It's hard to talk about stuff like that. It's so easy to feel hopeless with this disease and the lack of awareness surrounding it is frustrating beyond words. Thank you for being brave enough to write this post! You are so very brave! :)

  2. So true. The emotional stuff that goes with this disease is worse to me than the physical pain. I feel I have lost my purpose in life. I've lost most all of my friends. No one checks on me any more.
    And worst of all... I start doubting myself, how sick I really am, my diagnosis, my doctor, my treatment, my faith.

    There is nothing easy or concrete about LD treatment or diagnosis. I feel like a human guinea pig!

    Before I was diagnosed with LD I suddenly started having severe symptoms. I went to several specialists to get checked out but the scariest symptom was SEVERE mood swings. Well not even swings just unexplainable dives into the deepest, blackest hole I'd ever known and moments of uncontrollable rage. One of the doctors was an OBGYN. I figured it might be hormonal. She could find nothing wrong and said I was fine and as I teared up with hopelessness and asked about my symptoms she said smugly, "Wouldn't it be nice to have a pill for that?" and walked out the door.

    That's when I really started losing my faith in doctors. Oh, and add to it the Rheumatologist I saw in the same time frame who wrote on my family doctor's report "...patient's perceived pain and fatigue." It doesn't take a rocket scientist to figure out how he meant "perceived" (all in my head?).

  3. I just read you post and had to think if I was the one who wrote this and forgot, it is so similiar to my journey and how I feel. I have been battling for 20+ years and finally found out why I have been so sick. I have been getting treatment for the past 5 years, but I am in so much pain that if it weren't for my kids I would kill myself. I have infected all four of my kids and I think my husband. It is hard enough to be sick and in pain but to have to care for 4 sick kids on top of it is really hard. I used to watch other peoples kids but can't anymore. I felt the same way guilty. I need to make money but can't work. It felt good to read this but still feel like I don't know how I will make it through this.

  4. I had to quit my daycare job, it was just too much to handle. It was the hardest but best thing I could have done to help heal. Now I am on picc line treatment and doing so much better! Keep fighting, there is a light at the end of the tunnel!!!!