A Life On Pause

It’s nighttime. Lying in bed wide-eyed and frustrated as the clock ticks, you pray for just a few hours of precious sleep. Insomnia plagues you. Your usual sleep medications have no effect on you tonight. It’s as if you just swallowed some candy instead of a sleeping pill. Tears stream down your cheeks. You bury your face into your pillow and weep softly so as not to wake anyone else. Is this really happening again? As the night bleeds into yet another day, time becomes irrelevant as there is never any period of rest. The sleep deprivation is a cruel form of torture for you with no end in sight anytime soon.

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If you could nap during the day, the constant sleeplessness might be easier to tolerate. Lyme Disease wiped out your ability to nap years ago and no one has any solutions for you. Some people want riches or fame, but you, you just want a brain that functions normally. To have a brain that sleeps, isn’t foggy, jumbled or forgetful, is your greatest wish.

A streak of bright, orange light bursts through the curtains. Damn it! It’s morning now. Utterly depleted, you continue with your idle rest in bed as you wait for the alarm to go off alerting you to take your medications.

Almost every medication prescribed to you requires you to take it on an empty stomach. These are instructions you find particularly challenging to follow. Sometimes, you wait more than two hours before eating breakfast just to squeeze in your morning handful of pills.

Invariably, some medication or supplement gets missed. You panic as you rework your entire medication schedule for the day. There is no room for error anywhere. Hopefully, tomorrow you will get back on track. Treatment for Chronic or Late Stage Lyme Disease is regimented and intense. You persist through these demanding protocols in the hopes of having a normal life again.

With the multitude of symptoms you experience daily, you’ve become too ill to work. Career advancement is not a realistic option for you anymore. No landing your dream job. No starting your own business. The longer you struggle with Lyme Disease, the further away the reality seems that you will ever go back to what you once were.

Lyme Disease can be disabling although some medical and political establishments will tell you it’s not even a real disease. Oh, how you would love if this disease were fake, a figment conjured up by your wild imagination. That somehow seems treatable and much less expensive.

But it’s not an elaborate fabrication or something you’ve concocted for attention. You’re not lazy, unmotivated or a head case. You are not choosing sickness so you can lay in bed all day. This illness is real and it comes with a hefty price tag.

If you have Lyme Disease, you will spend all of your money – every last cent – trying to get well. You will invest tens-of-thousands, if not, hundreds-of-thousands, of dollars on trying to save your life. If you’ve had this illness long enough, you’ve maxed out your credit cards, probably drained your savings, pensions, IRAs or 401k’s. Evidence of a life before Lyme quickly vanishes.

Physicians most literate in treating Lyme Disease are not covered by your insurance. To get well, you will likely need a multifaceted approach to treatment, including regular testing, prescription medications, supplements, and herbal medications. The effort to repair the damage that chronic Lyme Disease has caused is costly, burdensome and at an enormous out-of-pocket expense to you and your family.

Yet, you continually find the strength to persevere. You hold on to hope with fists clenched so tight your knuckles change color. Your hope is in a better quality of life. Your hope is in a future filled with joy and less suffering.

During your battle with Lyme Disease, you have not been able to attend weddings, baby showers, family holidays, or outings with friends. You have had to say, “no,” more than you say, “yes.” By now, you feel the pain of isolation. You wish people understood your illness better or, at the very least, that you had some special superpower that allowed you to articulate the torment raging on inside your body.

You will continue to battle this illness with everything you’ve got, but there’s very little energy left (if any) beyond dragging yourself through each day. You need continued help and support no matter how long this journey takes, but you find most relationships cannot endure this level of hardship over the long haul. Your heart badly hurts as you sense relationships beginning to slip away.

Sadly, most aspects of your life are on hold indefinitely due to this illness. Recovery is long. Thoughts about dating, getting married or planning for a family fall to the wayside. You feel this illness stealing some of life’s most precious opportunities from you as you wait for the moment when you might one day be well again. The future seems so uncertain.

Like so many other chronic Lyme patients, you constantly feel the slow, suffocating effects of a life on pause.

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Note: May is Lyme Disease Awareness month. I see so many friends struggling right now that I wrote this piece in an effort to release some feelings I’ve had buried inside of me for a long time. This is my story, but it also includes the experiences of so many others I have talked with in the past few years. Many have not yet found a way to communicate the pain and heartache that comes from having this illness. I hope you will take a moment to read A Life On Pause. 

55 thoughts on “A Life On Pause

    • Thank’s for this post ! It’s so really true! My brother and me have so many pains and all the rest … He does’nt support the treatment!
      It’s terrible because for my brother because he does’nt support the treatment!
      And i don’t know what to do anymore for him now ! It’s so difficult in France !
      GenyVince

  1. This is your best written work yet. I hope to see more like this. Keep holding on and don’t ever let go!

  2. This is beautifully written Jenny. I can feel the emotion and pain below the surface of every sentence… And yet I feel the strength and determination as well!!
    This illness robs us of so much and you’ve captured that in this piece!!
    Healing thoughts coming your way <3.

  3. You captured the feeling perfectly! It was like reading my very own experience! Thank you, God Bless us all who wake up each day as warriors to continue to fight the battle.

    • Thank you so much for taking the time to read my post Ree! I really appreciate your comment. We ARE Lyme warriors and I hope and pray for continued healing to us both. Much love to you!

  4. Wow…this resonated with me so much!!! I have chronic Lyme disease and I felt like I was reading about myself! You write very well! Thank you for making me feel validated!

    • I am sorry that you are also battling Lyme Disease Jaime, but I am glad that my post resonated with you. Hoping and praying for continued healing for us both. Thanks so much for leaving a comment!

  5. Jenny, that was difficult to read but oh so beautifully written. You do truly have a gift with the pen. Keep it up and thank you, for saying what we often fear to express or truly cannot find or remember the words with which to express it.

    • Josette, Thank you so much for taking the time to leave a comment and for your kind words about my writing. I am hoping and praying we all find our way through this!

  6. Spot on! Thank you for putting into words what my teenage daughter can’t always articulate. We’ve been, she’s been fighting for 3+ years now and it’s extremely hard for her not to get discouraged. She’s soooo tired…
    Thank you for putting a voice behind the disease to help remind us of what our loved ones with Lyme are challenged with everyday.

  7. It is like reading my own thoughts from my heart. Thank you for writing this…. I just wish there were more who were understanding… I guess if there were, we wouldn’t be fighting so hard all of the time. We have endless hope, as Lyme patients, sometimes I don’t know where it comes from. I guess by the Grace of God only.

    • Thank you Jennifer. I agree with you. By the Grace of God. Where else can we find and endless reservoir to continually draw from? I know of no other place. It is my greatest source of strength.

  8. i need your thrue and quite comments on how you feel how i feel but can’t say by shame to be so bad and powerless.

  9. So many of these thoughts ring home for me as my daughter had lyme disease which was not diagnosed for 12 years…and yet, she & you both battle on hoping for the time that your lives can return to some semblance of normality. Thanks so much for a well written article.

  10. I cried reading this. It’s unbelievable how well I can relate to a total stranger but feel so strange with those I’m supposed to know. Thank u for sharing a glimpse of your life with us. I understand u.

    • Thank you for your comment Sara. I know it’s hard for those around us to truly understand. I am glad my post resonated with you. Wishing you continued healing.

  11. Wow if i had to start writing how & what ive gone through I couldn’t written it as good as you could wonderful writing if only more knew about it & more help was available

  12. Perfectly stated! My daughter could have written this because this has been her life for the past 4 years. My heart breaks for all those infected and I pray a cure will soon be found.

    • I am so sorry to hear about your daughter. We appreciate the continued prayers and support of the people that help care for us. You are our angels! Thank you for the comment.

  13. This was so beautifully written! It is a very true description of the incredible suffering and anxiety that so many victims of chronic Lyme endure. My daughter has suffered for years now and your heart wrenching description is a very true account of her journey with this despoiler of so many lives…
    You have elegantly and truly chronicled this journey. Thank you!

  14. Wow, this is so powerful. You really captured the Lyme experience. I was diagnosed with chronic Lyme one year ago after struggling through years of unexplained illness, during which time multiple doctors repeatedly claimed there was nothing wrong with me. After almost a full year of antibiotics my health has improved significantly. I’m not back to “normal,” but there is hope. I now believe that one day I will be completely healthy. Thank you for the excellent post!

    • Ah, the moment where you believe you can be completely healthy again is THE BEST. I still have a long way to go too, but I know things can continue to improve. Wishing you continued healing.

  15. This is my life!!!! Thank you for putting it into words. Now if only my family members, friends, and co-workers would read this and understand, not to mention the SSI and disability.

  16. Very truthful written. I can relate to anything you’re saying, it’s a hard journey, underestimated, and it’s like im reading my own life! Thanks for putting it out in such good words! Keep on fighting!

  17. Wow, this was prolific for me (and clearly so many others)…holy sh*& did you hit the nail on the head! Every single part resonated with me. Beautifully written; thank you so much!!!

  18. You did a great job describing how lyme impacts our lives. And at a level that those who don’t live this experience might be able to slightly comprehend. Thank you for sharing and raising awareness. I hope you will your battle with lyme.

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