Relapse Journey: Is Choosing Treatment Still Choosing Life?

Here, let me type this so you all won’t think I live in a happy-land bubble. (That’s not really why I’m typing this, but it’ll probably confirm it unintentionally.)

This relapse has sent me on quite a ride, physically and emotionally. I did need to take the full two weeks off of treatment, and I’ve only been back on treatment one week before hitting the point of “why am I doing this,” because I’m still relapsed, feel like hell, and I can’t handle this. I’m generally better than I was during the initial crash, but I haven’t bounced back from that point, yet. And the pain…

I have been on twice my usual pain medications, every day, for almost the entire past three weeks. I think there was maybe one day I was okay without anything (and I really wish I knew how it happened!). This has mostly resulted in me subjecting myself to psychological torment over needing them. I used to be able to take breaks from ibuprofen, for the well-being of my stomach; now I cannot. I used to be able to take Lortab (vicodin, as most people know it) once or twice a week to get through the worst of things; now the pain is so bad I cannot function without taking it daily.

Even typing that–that I can’t function without painkillers right now–makes me feel guilty!

In my head, all I hear are family members who took them, who REALLY DIDN’T need them and therefore think no one else actually does, either; other spoonies who have said incomprehensible things like “this suffering is unbearable but I ‘don’t believe in’ taking pain medication”; and society saying that anyone who takes Vicodin is probably one step away from being House, MD during one of the really bad rehab episodes. So yes, cue the shame over needing something to make it through the day, when I previously could just tough it out.

I’ve done a lot of thinking about this, dissecting it from various angles… It’s like I feel I am somehow responsible for needing it, as if I did something to make this happen instead of realizing my body is severely ill. Well…

My favourite quote is the African proverb,

“When there is no enemy within, the enemies outside cannot hurt you.”

Which translates to: Someone’s ill-conceived judgement of you is not going to hurt you unless you actually believe what they say to be true. I even wrote it on my mirror in dry erase marker a few months ago, to remind me of it. This helped me realize that it wasn’t what I thought everyone else was thinking that bothered me–it was actually what I was thinking about myself. I was the one condemning me, not anyone else.

The people who love me were actually very glad I had adequate pain relief! It was (is) the only way they’ve gotten to see or hear from me at all the past three weeks!

It all boils down to a loss of control, I think.

  • Maybe I’m just not ready to accept that I’m still under the effects of this relapse and haven’t bounced back from it yet.

  • Maybe I’m scared my disease is worsening or my Lyme treatment isn’t working or has done all that it can do.

  • Maybe I’m uneasy because I’ve never been dependent on a controlled substance before.

  • Maybe I’m not ready to accept that I’m a chronic pain patient again.

  • Maybe it reminds me that things WILL eventually get worse.

  • Maybe I’m scared that there is no turning back from this point (even though there probably is).

These are the ways relapsing makes you feel. I’m frustrated over my Lyme treatment, and all these medicines, and I’m just.. so tired of all this. I’m so tired of this fight to prolong my life.

Sometimes I just want to stop taking everything and see how far I make it. But I also feel that’d be almost the same as suicide.

I just think, Well, if I’m going to keep going downhill, at least let me not fight/make it happen even quicker; it’d be better to enjoy what I still have than waste what’s left on a battle I can’t win. My doctor once told me that, even. If the treatment is as bad as the disease itself, to weigh my options. Treatment for chronic Lyme disease is like chemotherapy for cancer; don’t let anyone tell you differently. And even if you get relatively symptom-free, it can always come back. My old bartonella infection could always come back, even.

So for now, I’m returning to once-a-day Biaxin for the Lyme disease and Mycoplasma treatment. It’s either I go back to that, or I stop treatment completely. I’m emotionally worn out from getting better and then relapsing, with each event being worse than the one before it. (Quite a predicament to be in when my subset of myalgic encephalomyelitis is relapse-remitting–that’s pretty much all that my future holds!)


This might all seem like a 180 from my last post, but it’s not. Maybe I had to express how grateful I am to be alive, so I wouldn’t think this (what I’m feeling) was because I wasn’t… Because I am grateful, and all of this isn’t because I’m not.

My being thankful to be alive and also tired of fighting are not mutually exclusive.

I am so happy to still be here, to have all these things that help me, and people who love me… And sometimes, I just want that to be enough. Sometimes, I just want to embrace my accommodations, enjoy what I have, what life I have left, and live out the rest of my days in as much peace as possible, without the fighting to stay alive part every day, without the medications that are keeping one disease from progressing but which may be setting me up for worser things in the future.

The choice is ultimately mine, I know.

I don’t often say this, and it might be a bit crude, but I should get an award for not offing myself yet. I have friends with this disease who have tried, and friends who have succeeded, and I don’t blame them at all. No, I don’t blame them at all, in the face of a disease that takes you oh-so-slowly. To hold on when there is little hope of a cure, and you know what you’ll face later on: that is a true survivor, no matter what the disease does to you.

Well, actually, I did get an award; a blog award, and I’ll talk about that… In my next post. Along with some facts about the me, the person behind the blog.


For others going through a relapse right now, I offer you this:

What is a relapse?
It is an unexpected deterioration in the condition of a sick person after partial recovery.

Conclusion: A little Allegory
Imagine, if you can, a tranquil English breakfast table. The kettle steams, the electric toaster is in action, but someone forgets to adjust the thermostat. Suddenly the smoke alarm shrills from above and is wrenched from its socket before upsetting the neighbours.

Despite our wonderful self-regulating kitchen gadgetry, all is in chaos! In future, pay careful attention to your body’s thermostat, your daily variation in energy and activity and remain grateful for the commotion set up by your immunological stress alarm if it prevents another set-back. Good luck!

http://www.tymestrust.org/pdfs/nosmoke.pdf

a rainbow at night

Attention: I’m not suicidal.
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14 thoughts on “Relapse Journey: Is Choosing Treatment Still Choosing Life?

  1. Great post, it really resonated with me. How I feel on treatment is just as bad as how I felt before treatment, just in different ways. I’m still clinging onto hope that I might kick the lyme once and for all, but there is a huge, HUGE elephant in the room – fear that it’ll be a constant companion through my entire life.

    I hope your relapse improves soon :)

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    1. Hi deci, thank you very much! I hope you are feeling better after your mini-break, too. And I’m glad you thought it was a great post–I really just let it all go as far as what I wanted to say.

      I also fear that Lyme will be with me forever. I have immune deficiency and also immune dysfunction, so I honestly don’t know if beating it completely is a possibility or not. My goal this year with my doctor has been to get me out of the danger zone–every time I took even a short pause from treatment, my neuro sx progressed immediately. I don’t know if I’m out of htat spot, yet. Next month I’m going to have a talk with my LLMD and discuss what my options are: Should we try to kill it? Should we just try to make it go into cyst form, since that at least doesn’t cause symptoms (but will open back up once conditions are favourable)? Should we treat agressively and then take breaks? I also have one of THE most amazing Lyme specialists, who is also open to combination therapy, so maybe I can even just switch over to naturals for a while. I don’t know! But having some new direction might be a good step.

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  2. I don’t think you should feel guilty or self-conscious about needing pain medication. Why be in pain if you don’t have to be? Maybe if you are feeling judged, let people know how much you hate needing strong pain meds and how it scares you and that you wish you could just pop an ibuprofen like everyone else. Let them know how your doctor advocates for you to take it. I don’t have Lyme, I have a different chronic illness so I know it’s a different ball game. But… I went for months needing Tramadol everyday, and now I only need it about once a week.

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    1. Hi Jackie, thank you for your comment. That’s a good idea! I survived seven years on just OTC medications because I’m so sensitive to medications; I really DO just wish I could still pop a few ibuprofen and be all right!

      What you said about needing tramadol for months and then being much better now, is very comforting and encouraging for me, so thank you very much for sharing that. ♥

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  3. Anyone who doesn’t believe in taking pain killers has never experienced pain strong enough to actually require taking themin the first place! It’s sad and really annoying (understatement) but inevitably a lot of the treatments for chronic infections result in you feeling worse than if you hadn’t taken them at all, however it’s very tricky to turn this around and see the pain and suffering as a clearance of some of the baddies that are affecting our system being got rid of. I hate herxing and I now I’d feel better than this without my treatment (temporarily) but I’m trying to look at the long term picture of a longer better quality of life and the pain for me is a sign that it’s working. It’s real balancing act between having too much pain that stops you doing anything (and wanting to end it all) or doing nothing and feeling bad (and probably worsening with time) as the illness progresses. My mind swings between the two but at least if I’m doing something I feel a little more positive despite the pain and disability that goes with it, it helps my mental state of positivity and gives me a feeling of some control, even if there really isn’t any. Hang on in there ARAN!

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    1. I completely agree, Lesh–if someone thinks taking pain medication is an “option,” unless they do absolutely nothing for them then they haven’t experienced the level of pain I’m talking about. Typing it out makes their opinion seem all the more unnecessary!

      You’ve pretty much described exactly how I feel within the rest of your comment, and I know you understand what this is like. I usually do think that treatment gives me some control, because when I have to take a break from it, I can feel and enjoy the improvement I’ve made and it motivates me to keep going once I resume. But right now, during my recent break I felt exactly the same as if I were still on meds–it was very discouraging! I’m hoping going back to the once-daily Biaxin (extended release) will bring me back to the slow improvement without the severe worsening. I’ve been worsening myself for three years now, and I have my life to show for it, but I don’t know how much more I can take!

      If it comes to it I suppose I can always take a few months break to clear my head. I think that’s what they do for people on extended chemotherapy. I can’t help but think my body would appreciate it, if I’ve reached a point where that were safe enough…

      Thank you so much ♥

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      1. I think taking a break from the punishment for a while would be beneficial mentally and physically. You might feel more envigorated and ready to keep going on the same track after you’ve had a little chance to think more clearly with less stress and hopefully less pain. Hopefully a month or two off won’t have much of a detrimental effect. Good luck.

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        1. Well, I’ve already been off for one month, and nothing too terrible has happened. That’s better than being off for one week and my symptoms progressing; such was the case back in February. As of right now I’m taking another two weeks off until I speak with my doctor and see what he thinks we can do. I really, really hope that after this break, I do feel envigorated and ready to fight again. I’m scared that I won’t have it in me to resume treatment, but there’s only one way to find out…!

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  4. As always, your honest sharing is extremely valuable to many! Once again, I think we are in sync in our soul-searching and I thank you for this blog in which you remind me that across age, illness and cyberspace, I am not alone.

    As for those who “don’t believe” in taking painkillers or “don’t believe” we are as ill as we are, tell them it’s not a religion.

    I find that works quite well ;)

    Peace.

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  5. Love to you. I’ve been going through a setback myself. Mine I feel was self-induced, not intentionally of course ;) But I did too much and then set myself back, thinking I could just rest and come outa it. I pushed myself too much and the setback has put me on a riding-the-wave experience … the ebb of pain, then it calms, then it’s back, then it calms. I think the most challenging part of illness … well, one’a them anyway ;) is determining my limitations. Do you feel that way too? Sending you peaceful healing restorative energy on your journey.

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    1. Even when it’s not self-induced, I wonder if it is, so I understand. I’m sorry you are having a setback–is that why I have the rare pleasure of reading your comments to my blog? ;) I’d much rather a different situation, of course, but I am amazed at the similar journeys we all have, that bring us together to support one another.

      I’m somewhat of an expert on my limitations after all this time–my crux lies in wondering whether or not I can cross them! This weekend I chose to cross them and luckily I am recovering all right. With time we really do learn what our bodies need, if we listen. That’s why I feel this recent break in my treatment is so necessary. Thank you so much, Colleen ♥ I wish you a graceful recovery.

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