Confessions Of A “Functioning Lymie”

I look fine. I may seem fine. I probably sound fine. There are some new photos on Facebook from a couple weeks ago of me out with friends, smiling and having fun, having a few days of normalcy that are momentous and rare to me, but would probably not be a big deal for you and just a normal part of life. They were taken during one of those glorious and all too rare periods when I had several consecutive days of energy and feeling pretty good. (Today is not one of those days.) 

(*disclaimer; I have to attest to the fact that I am still on an upward track with my overall health and what I am experiencing right now as far as this current setback is die off from recent treatment on May 23rd….at least I believe so). 

But what people don’t see are the days inbetween, the days that I spend in a hazy purgatory of fatigue, fuzz, pain, swelling, isolation and my body’s betrayal against life itself. 

I have to work tomorrow and I know that somehow I will pull together like I always do and put everything I have into doing my best at work, doing everything I can to just seem normal and do my job to the best of my ability, and thankfully I have been blessed over the years to stagger along in this manner; being a functioning Lymie.

 I also have a gathering to go to after work tomorow and this is causing me distress. Why? Not because I don’t want to go, but the complete opposite! I want to badly and it is vitally important to me. But for me I don’t usually do anything on a work day afterward because I just spent the day giving 100% to my job and I will be drained, tired and numb. Instead of having fun I am worried I will just be in a haze of fatigue and rather than enjoying myself I will be a half-human whose mind is only about 30% present and therefore will get about 30% enjoyment being with my dear friend. These are the challenges faced by the upright and mobile Lymie. Spoons anyone? (Spoon Theory)

That said, when others can’t see the sickness (I haven’t lost hair, I don’t have an IV port or a wheelchair, I’m not gaunt or jaundiced) how can I convey what it’s like to be a functioning Lymie? (Please note I am also using the term “Lymie”right now in a generalist sense because I believe I am clear of the Borrelia itself at this point but I just got treated for still-present coinfections: Erhlychia, Clamydia (non-STD form), Epstein-Barr, Lyme Virus Coinfection A, Lyme Virus Coinfection C and Protozoa. But as we all know chronic Lyme is never just Borrelia). 
I know that the yoyoing makes no sense to outside observers, those who don’t understand chronic Lyme; how can you be having fun at a festival one weekend and then in bed unable to socialize the next? Trust me it’s complicated, and frustrating isn’t a strong enough word for those of us that live through it. It is like being baited with tastes of life and constantly having it snatched away again. 

So what is life like when I’m not doing so well, and you don’t see me, and there are no photos taken? :

I wake up at 10am, I  don’t feel like moving. I feel groggy and heavy and “hungover”. I had a hard time falling alseep last night, like most nights. It’s a catch 22 because the stuff I take to help me sleep can also leave me feeling tired the next morning. Despite getting 9 hours of sleep I don’t feel rested at all….I may need to take a nap today. My brain feels like it is still in that state of shutting down, you know like how it feels when you are in the process of trying to fall asleep? It is doing the opposite of what it should be doing, being that I am trying to wake up. I do haul myself out of bed and I try and have some caffeine to counteract my wayward brain and body. I also take my morning pills. Since they are supposed to be taken away from food I wonder as I do every morning whether the creamy fluids are a problem. As usual the matcha green tea hemp latte isn’t doing it as far as waking me up, and although I am not supposed to have coffee, I reach for it anyway hoping that it will be my nectar of life. Sigh, I know this will continue the vicious cycle of inflammation and irritating my iGg reaction, but I so desperately want to feel awake. Choices choices…

I then decide to take a bath with Epsom salt and baking soda to help with the pain and stiffness, and to help me detox to (hopefully) help with this hungover feeling. After my tea and coffee and morning pills I feel too nauseous to really eat. I will probably have a bite of something here and there but on most days like this breakfast and lunch sort of meld together and meals get messed up. I also have my two doses of meds, morning and night that have to be taken two hours away from food and other pills….I am already off schedule and my day just started. I pretty much know that my dose of cholestyramine will get skipped yet again (like it does most days) because it also has to be taken 4 hours away from food or other pills. Then there are the pills to be taken with food… Might not get those in today either. This is impossible. 

I spend maybe an hour in the bath catching up with Facebook  and mail, listening to my current audio book, reading my Bible app and playing Candy Crush and Words With Friends. I eventually drain the water and spend at least another 30 minutes sitting in an empty tub because after a bath or shower I usually feel weaker, more lightheaded and struggle a little with feeling breathless and have a harder heartbeat. (This phenomenon: Why Do I Feel Worse After A Shower?). 

I finally get out and get dressed, my equilibrium is off and I’m a little tippy. This is not entirely normal for me and I attribute it to die off/herx (What is a Herx?)

I look down at my body which I usually try and avoid at all costs; it is swollen and the edema is especially bad, and my legs are jiggling like a water bed (you think this is an exaggeration, it is not). The water retention makes my legs much bigger than they would be (come to think of it I haven’t seen what my body would look like without fluid in the last 7 years or so), It has also been this long since I have worn jeans or slacks because of aforementioned fluid. Did I mention it also hurts? Imagine the worst sunburn you have ever experienced, now picture the deep muscle ache of a hard workout after having not worked out for months… Got it? Okay. Now combine the two together and imagine them not on your skin or in your muscles but in all the deep tissues in your legs. Now imagine that pain is constant and you’ve had it for so many years you can’t remember a day without that pain. The only variance is that on good days it’s a low-grade 2, and on bad days it can be an Advil-inducing 8. This is a further incentive to keep a strict diet because increased pain and swelling can be almost instantaneous with ingestion of “bad” foods. (although I fail so often with a bite here, a nibble there…and remember the problem of coffee!) Thankfully for the most part it has been improving and today the fluid is bad , but the pain is maybe a 4, even though the lower half of my body  (that I always hide and cover up) looks like Rosemary from Shallow Hal. I am just blessed not to have cankles today. 

I see my face in the mirror for the first time today and it is of course all puffed up, most notably under my eyes. This is now of course also my normal and I wonder what I would look like “unpuffed”, I do get glimpses from time to time.

It’s now into the afternoon, I  haven’t eaten much, I feel fuzzy in my head and tired despite my green tea and coffee. I really don’t know what to do with myself today because I’m too tired, so I sit on my bed with my phone. I would love to go on a walk or bike ride, but I feel like I can’t even force myself to get up and go do anything. I have my standard low grade headache; this is something I actually don’t really complain about or even acknowledge because it is so normal I don’t know what it feels like not to have a headache. 

Many of you wonder why I don’t paint or do something artistic on my days off like this, it’s hard to explain. There is a definite disconnect in this hazy purgatory where you are aware that there is a part of you that can do those things and enjoys doing those things, but you can’t access that piece of yourself, even if you wanted to. Believe me I’ve tried! I’ve sat down and tried to paint on days like this and it’s like trying to draw water from an empty well…it just doesn’t happen.

So here I sit, another day of nothing. Another day of waste. A day where the tears do come. Another day sacrificed to the hungry Lyme gods that eat our lives and our souls…one apathetic day at a time.                                                                   

I’ve given so many years of my life to days like this they can’t be counted. I’ve given my twenties, and now most of my thirties. Only Lymies will understand this, but this disease EATS YOU! It eats your body, your mind, what makes you you. It also eats your time on this earth.. Like water eroding the shoreline.

Today I need to pray more. Today I need to focus on God’s truths; because on days like today that are empty nothing’s sucked into the void, I have nothing else. 

Looking “fine” a couple weeks ago

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48 thoughts on “Confessions Of A “Functioning Lymie”

  1. I spent many years giving my best to my job. It was not ethical. My congregation (I’m a Presbyterian Minister) needed to see the real me and my family deserved more than the shell I provided them after working. It is also too easy to use medications to show your best face to world, and that can lead to addiction and dependency, which your family and loved ones will bear the brunt of.

      • I’m so sorry. You have just described my life exactly. I was in medical management and had to stop because of what you described. I walked in everyday after work and got in bed and stayed there. Now, my disability insurance is denying my claim…..

      • My sister and I were never able to get disability when we were in the worst of our treatment (first three months we were both bedridden and unable to work when we started Lyme treatment). My sister didn’t work at all for about 9 months and same thing… Couldn’t get disability.
        I hope that you are able to find successful treatment and get your head above water again

  2. Thank you for writing this……I feel like I could of wrote this myself as this is exactly how my life is on a daily basis down to the exact meds and trying to plan out when to take them. Glad I’m not crazy and the only one that experiences these specific things. I wish you all the best and hope the good days start to out weigh the bad.

  3. 1-2 scoops of Opticleanse GHI by XYMOgen then add an extra small scoop of Glutamine powder (research brands on Glutamine). This makes a perfect breakfast on days that you feel you can’t eat. It was recommended to me by a Lyme literate physician and it has been a real life saver. You can add things to it to make a smoothie (veggies, tumeric, ginger, etc…) or you can just mix it with plain water or almond milk. The Opticleanse is a vitamin/mineral/rice protein powder dry mix.

    Check it out, and good luck.. PS I drink it before my coffee to keep the acid from ripping up my stomach lining. πŸ™‚
    Mel.

  4. Thank you for writing this. You just described my life verbatim. Although I do not enjoy hearing of another’s suffering, it is nice to know that I am not alone, and that someone else knows and understands what I am going through. God bless and speed you in your recovery, may your good days outnumber the bad ones and continue to multiply!

  5. Is there a way to subscribe to your blog? I am not seeing it. I just read your BIO and it sounds just like me so I’d love to see your new posts as they come. Thanks.

    • Hi Traci thank you so much. I know that there are ways to subscribe to blog on WordPress, I am not sure if my page format supports that or not. My blog posts do automatically update on my Lyme Facebook page which you are welcome to follow: My Color Is Lyme

  6. Wow. WhWh a powerful piece. Would you be interested to have this shared on my Laugh Out Lyme and All Chronic Illnesses blog as a guest blogger? You’d obviously get credit and I’d add a bit about your blog to guide them here at the end of the piece. I’d be honored to share this. We have covered a lot on our blog, but, ironically as I have Late-Stage Neurological Lyme Disease, nothing specifically about Lyme. I’d love to share this with even more people. If you’re interested, email me at laughoutlyme@gmail.com and please check out the website (www.laughoutlyme.com) and our Facebook page that has absolutely exploded (www.facebook.com/laughoutlyme). I also post it on all of our social media accounts (Instagram, Twitter, Facebook) so as many people can see it as possible. I look forward to hearing from you.
    Lindsey
    Admin, Laugh Out Lyme and All Chronic Illnesses

  7. I am struggling terribly. I have been diagnosed and the drs office treated me until the ins stopped paying the huge mark ups on the seevices and no lyme in Texas theroy leaves me bewildered. No one will treat my Lyme and I have lost all hope. My finances are terrible and the drs lack basic knowledge and refuse any effort. The disease is winning and clearly my husband and my kids 5 teens and 1 yr old grand baby deserve better…

    • Oh Sara I am so sorry, you are not alone in this struggle and being in the difficult place you’re in. I read sentiments exactly like yours all the time and it is completely heartbreaking. My heart goes out to you and if I had the power to heal you I would in a heartbeat. I pray you find treatment and hope despite the odds.

  8. me exactly as well. it’s been going on (and off and on and off and on) for 21 years.

    danced (clean) for a solid 4 hours about two weeks ago, and paid for it a few days later and currently still in recovery mode.
    my first appointment with a lyme-literate professional is tomorrow.

    THANK YOU FOR THIS.

  9. Thank you so much for writing and sharing this! It’s as is if I was ready my life! You are right, only Lymies will understand and that’s what I try to remind myself when I feel judged. They are not walking in my shoes so it’s not fair for me to judge others either. Praying for strength and health for us all!

    • Hi Natalia, before getting a better type of treatment I was on prescription anabiotic’s and Samento and Banderol for two years. They really did not help me.
      I am actually on the last legs of treatment now and the lime is well under control, but thank you for your help and advice.

  10. Hooked up to my IV antibiotic as I read your post! Late stage Lyme that is attacking the Neuro stem of my brain. Ms/stroke like flares that occur about every 5 weeks lasting 7-10 days. Right sided paralysis, left sided severe migraine, cognitive impairment, visual distortion, aphasia and slurred speech, all over painful muscle spasms with continual involuntary twitching. The body becomes possessed and there is nothing to be done about it until the flare runs its course.
    You then have 3 or so weeks to recover, get back on your feet and try to regain some strength, just in time to do it all over again!
    A total nightmarish hell that began out of the blue 3 years ago slowly killing me a bit more with each day that passes.
    I get up, dress up, makeup, and show up usually with a smile! Must not quit, must continue to perservire. What’s the alternative!
    Got two small kids, can’t work, going bankrupt due to
    Medical bills and tests not being covered. The list goes on and on with no explanations, rationalizations or solutions.
    Just prayers, prayers and more prayers, to understand, to cope, to live.

      • Thank you. I truly believe that it’s through the sharing of our disease and experiences that we can broaden knowledge and hopefully acceptance of Lyme. Those suffering find comfort and support in sticking together and helping each other through. 😊

  11. Thanks you so much for this. It made me cry but also gave me a chance to post it to my friends to see if they can understand me. I am on a downward spiral and I can’t seem to stop it. I am in a wheelchair but I keep working 3 days a week. You could of written this for me. Thanks heaps and I hope that your struggle is less. xxxxx

  12. I’ve been struggling with Lyme for the past three years and reading you blog just hit me like a ton of bricks. Thanks for sharing and putting into words what so many of us experience. It is both comforting and encouraging to know that someone else “gets” it – not that I’d wish this on anyone but I am so tired of feeling isolated and trying to explain what I’m going through to friends, family, and of course doctors.

    • Thank you Craig, and I am so sorry you are suffering too. But isn’t it so true that having another give voice to your suffering validates and helps you? I feel the same way when I read posts from others.
      I wish you all the best

  13. I’m so thankful for this blog. You so eloquently put into words what so many of us experience. Like some of the others who have replied here, I was in tears reading this…just knowing it’s “not just me” makes a world of difference.

  14. I want to join in with the rest of the comments and THANK YOU for pouring out the truth of what it’s like to be a “functioning lymie.” You have encouraged and validated so many of us. I completely identified when you expressed the frustration of trying to “convey what it’s like to be a functioning Lyme” without obvious physical indicators. I have no trips to the ER to tell about or use to “prove” the severity of my disease (I may not have a “severe” case of Lyme disease when compared to others, but when compared to me and my own experience, my case is extremely severe and unlike any other suffering I have known). I really needed to read this post today, and it has motivated me to keep reaching out to my outlets of support. We can’t do this on our own. Much love and strength be given to you, dear Jennifer, on your journey to healing.

    • Anne thank you so much. I am sorry you are suffering, sometimes I am overwhelmed by the amount of people in the same boat as we are.
      I am hoping all of us online will someday help with a change in the CDC.
      And it does make a huge difference when you read the stories of others who suffer the same way you do and give voice to what you can’t express. I am so glad you feel validated.
      Feel free to share this with friends and family, I have done the same thing myself when I find the writing of others that speaks for me.

  15. Thank you. I am on my way to be a Lyme advocate. This affects all of us and should not be the “man behind the curtains”. So many diseases are caused by borellia and coinfections. And the causes are ignored! The talking heads say there is not a known cause! I will not stand for this injustice. We can all feel better again!❀️

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