It Hurts to Live

  At the Doctor’s office the other day, I was placidly answering routine questions regarding medications, changes in any routines or treatments, and of course, current complaints with the nurse practitioner before my appointment with my MD began.
  “Where does the pain currently affect you the most?”  The nurse questioned, her pen steady as she listened for my reply.
  I laughed without humor before responding that the pain throughout the entire length of my body, including joint, muscle, and nerve pain, screamed daily in my ears at nearly equal levels. “It hurts to live,” I summed up without giving a thought to this simply put truth in my life.
  •   It’s a basic fact of my life – everything I do hurts. Walking, sitting, standing, eating, reading, writing, driving, shopping, traveling, treatments. Every activity hurts in one way or another. 
  For example, when walking my dog outdoors, the sunshine bothers my eyes and causes my chronic cluster headaches to worsen, while my muscles and joints ache as though my body significantly aged during the time it took to simply put on my tennis shoes.  Random noises can set my nerves on edge within seconds and temperatures high and low can cause my oxygen levels to dip while my heart rate soars
  Life hurts. Do I stop living? Some days I “take a personal day” and take it slow, while other days I fight through the pain, knowing that my life will unfortunately be filled with daily pain and I cannot retreat because of such difficult daily battles.
  After my answer at my Doc’s office, the nurse paused; later, she said it was hard to hear me say that life was pain and it hurt to live, adding with great tenderness that “it shouldn’t be that way.”
  You know what? I agree wholeheartedly, and will continue to live through the pain with the hope of living without so much of it in the years to come. 

 

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10 thoughts on “It Hurts to Live

  1. Hi Shelby,
    My name is Susan. I live in Australia and I have been diagnosed with Lyme. I had had it for approximately fifteen years. Things are really different over here. The Govt. and the Medical Association refuse to acknowledge that Lyme is in Australia and so NO doctors can treat you for it properly. I have been taken antibiotics for almost a year now with no appreciable increase in wellness for me. The strange thing is trying to find anyone who can or will tell me what I should try with regards to Herbs, natural therapies or alternate therapies. It’s a game of chase your tail. No patients seem to want to share information and I’m tired (how funny 😦 ) with feeling that I’m getting nowhere. i know you can’t tell me what to use – but I would really love to hear what you have been advised to try. At present it’s a pretty lonely feeling trying to go this almost alone. My husband drives me around – the meds are making me too dizzy and off balance as well as the photphobia and the nearest doctor risking treating the co-infections (he cannot treat Lyme remember) is 3 1/2 hours away – each way! It’s a long and tiring trip to be given scripts for antibiotics. Then we are left to our own devices until the next visit. I think I’d better stop there, if you prefer to talk via email let me know. I really would appreciate you sharing your experiences.
    Blessings
    Susan x

    • Hi Susan!
      Thanks so much for sharing your story with me; Australia is actually the one country that weighs on my heart the most as I have heard many other stories where health care for Lyme simply. ..well, sucks! When I can travel, Australia is my first travel destination.
      You have perfect timing, because I have been putting together a list of supplements and natural alternatives that have HELPED ME. Of course I clearly state that everyone’s body is different and will therefore react differently to the items on my list than my own body.
      My plan is to post the list on my blog when I’m finished. In the meantime, is there something particular I could perhaps help you with now? Are you wanting to detox, build immune system, reduce muscle pain …?

      Chat soon!

      • Oh Shelby – the timing is unbelievable. I have been detoxing – gently. The Lyme was the last thing to be dropped in my lap so my immune system is shot to hell. Probiotics, keffir or kambucha as tolerated. I know it’s not enough but where to start was hard and finding this stuff even harder.
        My immune system needs help and I think that’s why I’m struggling. After soong with ither ‘ailments’ which have depleted my immune system to suddenly be told that Lyme is here too…. they don’t tell me what to do and I’m researched into a circle. The fog has been pretty bad lately, I guess some depression creeping in. Muscle pain has suddenly ramped up like mad. I can barely move, and none without pain. This is – a painful pleasure. Anything you can suggest for me to look at… would be a blessings.
        Blessings
        Susan x

      • Susan,
        I am actually compiling a list right now of supplements that I have used throughout the years of my illness and of course, I will share them with you!! I’m planning on posting them to my blog once I have finished. These will all be supplements that do not require a Doctor’s prescription within the United States (I, unfortunately, cannot promise the same for international readers simply because I do not have personal experience).
        NATURAL, NO PRESCRIPTION, and PERSONAL EXPERIENCE …this list has been requested by many people through the years and I would have LOVED to have any type of list during my years of testing. Please know however (and this will be repeated on my sheet of information), these supplements come with MY personal experience. Every body is different, and therefore every body will react differently to different supplements. I can only share, I cannot promise.
        Keep an eye out for the list! I’m hoping to include websites that both provide information and sell each item, allowing readers easy access to more knowledge.
        Susan, I am so sorry you are going through such a tough battle; from the words you shared, it sounds as though you feel it is you against the world, or perhaps that you are coming close to the end of your rope and you are frustrated with the entire deal. Please know that I truly, truly understand the battle against immune deficiency, brain fog, depression (mine was quite severe, and for an extended period), and the struggle to know how much detoxing you should put your body through.
        May I, at this time, recommend this probiotic: VSL#3. It is, in my experience, one of the best probiotics on the market. It has greatly helped me as my immune system was depleted completely for years and needed an immense amount of help.
        Also, have you heard of Topricin? (www.topricin.com) It is an over-the-counter Anti-Inflammatory Pain Relief Cream. It is available at Amazon.com. It may help with the muscle pain, and it may be something to try if you are unable or would prefer not to get a prescriptive medication.

        I apologize for such a long reply; I hope I did not overwhelm you in any way. Please know you have a kindred LYMIE spirit here in the U.S. and feel free to ask any questions if you would like,
        -shelby

      • Many thanks Shelby, I’m not overwhelmed really. As you know, this thing is like a roller coaster, I’ve had my share of down days recently and the lack of information here is abysmal. I’m one of those people who needs information. The more I understand the more I can work with things.
        I’ll research the items you mentioned and I understand that each of us is different. My suggestion would be to include a “Disclaimer” on your page to cover yourself.
        I think most of us are desperate for any information (not necessarily advice). Looking forward to reading more later.
        Blessings Susan x

      • Thanks so much for your thoughtz- definitely good ideas! I’m looking forward to publishing the little that I can with the hopes that it can help someone out there!

    • I sincerely hope that I didn’t bring her to tears but it is true that, hearing those words said with a matter-of-fact attitude, would be so hard to hear. It’s daily life for me, but in some ways my pain compares little with the pain felt by those who watch us live.

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