Most people who have stumbled across this blog know about the delayed reactions Fluoroquinolone antibiotics can cause – health issues that don’t show up for days, weeks, or even months after finishing the medication. (My own adverse reaction took about 3 days to present itself.) For those unfamiliar with this concept, I recommend googling “Fluoroquinolone delayed reactions” to see what comes up. I would do it for you, and insert a link into this blog, but I really don’t feel like it right now. For one thing, I’m upset and just want to write, not search for links. Also, I’m not so interested in writing about the science behind FQ adverse reactions, or of proving my adverse reaction actually happened. At this point, with the mountains of evidence out there, along with the countless people joining support groups and vocalizing their suffering every single day, if you still don’t believe it’s possible I would like to simply part ways with you and wish you a long and healthy life, free of adverse drug reactions. (And I truly mean that.)
No, the reason I began writing this blog was so I could process the impact my floxing had on my life. I’ve found talking about it in a personal way – not a medical or scientific way – has been somewhat cathartic, allowing me the freedom to express the emotions and just the enormity of what I went through. Because it was enormous, and completely life-altering in every way. And even though I’ve experienced significant recovery, I’m continually surprised by how much my floxing continues to affect my life, even 6 years later. Surprised by the way it lurks under the surface at all times, and by the new ways I continue to realize its impact on my life.
For instance, for 6 years I’ve spent so much time trying to make the best out of my altered life that I’ve forgotten to mourn what I’ve lost. And I’ve been learning lately, that not only can FQs cause delayed physical symptoms, but they can also cause delayed losses.
What do I mean by delayed losses? I guess what I’m referring to is the realization of loss long after it actually happens. Or…reflecting back and seeing how a current loss is actually rooted in events from long ago. It becomes a delayed loss when you don’t realize it happened until weeks, months, or years later.
I think I know why I couldn’t mourn my losses while in the throes of misery. I think facing it was too much to handle at the time, back when I was spiraling down, unsure whether my life would completely shatter. When I was getting sicker, and more chemically sensitive, and reacting to my home and my workplace, I couldn’t grieve for all that I lost because I was facing losing absolutely everything. For a few months I felt like I was on the brink of homelessness, losing my ability to work, losing my child. I was so sick and so scared. Functioning in survival mode while frantically trying to keep myself afloat didn’t allow time to mourn.
When my health began to improve and the dust settled, I had moments of calm reflection in which I did allow myself to grieve my old life. But I think allowing too much grief scared me – I was afraid I would succumb to the despair that threatened to drown me while I was so sick. So instead of focusing on my losses, I began to celebrate my gains. While this allowed me to maintain a semblance of good mental health, I realize now that I inadvertently buried my emotions with my optimism. And what happens when you don’t fully process your emotions? Right – they come back to haunt you with a punch to the gut…like when you learn your mother’s health is failing.
I hate to admit this out loud, but I cut back on contact with my mother a few years ago. When I was struggling with health issues and worries, and just life issues in general, it became hard for me to talk to people…especially her. I was trying to maintain a positive outlook in the face of my life challenges, and every time I talked to her she brought me down. She started trying to guilt trip and manipulate me into calling her, and it angered me to have to deal with her negativity on top of my stress. So, I stopped calling. At least, not as often. And when we did talk, I was distant.
Fast forward to now. She was just hospitalized for 3 weeks due to her lung condition. I realized immediately when I heard about it that I wasted the last bit of decent health she had by detaching from her, and that it’s already too late to make up for it – she can’t talk for long periods on the phone anymore because she can’t breathe.
While I was taking a hiatus, setting boundaries to protect my mental health – or so I thought – my mother was losing the ability to care for herself and I had no idea.
Not only is that devastating and guilt-inducing all by itself, but it brought the old, buried emotions of loss to the surface from when my health was altered. I realized this is yet another impact of my ordeal: a loss of time with my mother. None of that would have happened had I not gotten sick. I wouldn’t have been overwhelmingly stressed, and she might not have been as needy had I been able to talk to her occasionally like I used to. My fucking Cipro nightmare indirectly cost me the last remaining healthy years with my mom. Because even if she lives several more years, she just isn’t the same. I will never get my mom back – not the mom I used to know.
I’m sobbing as I write this. Not only has my heart been ripped open, but I’m remembering all that I lost during those sickly years. Every single one of my relationships suffered. My son, my best friend, my parents, my brother and his family, my other friends. I’d say my boyfriend, but he’s the only one I still talk to regularly. (But actually, I almost lost him as well due to the stress of illness and the ensuing upheaval.)
The worst part is that it’s mostly my fault I lost touch with everyone. I was too sick, yes, which is understandable. But on top of being sick, I was embarrassed about the state of my life, and my struggle. I was ashamed that I wasn’t the same person – that I was sick, and slowed down, and less fun and intelligent than I used to be. I didn’t want people to notice that I was only a shell of who I used to be. And even though I’ve improved, my life overall still contains a struggle I don’t necessarily want to reveal to people. I want to be able to tell them that I’m doing well and enjoying life, but I can’t. All I can seem to say is that I’m not as sick as I once was, but I’m still struggling and stuck and vaguely miserable. I guess that’s a different reason for my shame, and partly why I didn’t make the effort to reconnect even after I began to get better.
So, the impact of my health ordeal is even greater than I realized. Through learning of my mother’s failing health, I’ve become reacquainted with the losses from several years ago which I never fully processed. I’m seeing the ways my illnesses impacted all of my relationships. As I glance around as a somewhat healthier person who is able to do and enjoy more in life than I thought I would at my worst, I see how everything is altered. It’s like time was suspended for me – as though I traveled somewhere for what seemed like a week but was actually 6 years, and was shocked upon my return – expecting everything to be the same.
But nothing is the same. Everyone’s life has continued without me, and I’ve mostly missed it. I’m looking around, and it feels like no one is there.
After 6 years, I still can’t believe how alienating this experience has been, and just how much it robbed from me.
I can’t imagine how I’m going to deal with losing my mom, or the anger and devastation of knowing this loss actually began 6 years ago when I swallowed those pills. Or the guilt of knowing I’m to blame for our decreased contact the last few years. I mean, I understand why it happened, but I can see now that decreasing contact with her was not the way to handle things. I’m not sure how I’ll ever forgive myself for that.
Wow, seriously? I had to stop talking to my parents ages ago because they didn’t believe in floxing and wouldn’t listen to a word I said about it. I would not have recovered as much as I have with them still in my life because of their negativity. I honestly believe that I would have gone further down the rabbit hole if I had listened to them… They are elderly and I struggle with the fear of losing them before I can handle contacting them again. But I try my best not to blame myself. I hope you will forgive yourself – this whole floxing mess is unbelievably miserable, unpredictable…and not your fault. I’m 6 years out and putting my life back together again. I’m astonished at how much time I lost to Cipro that I can never reclaim. And I lost many, many relationships that will never be the same. And it’s their loss too and they are partly to blame because of their insensitivity and their use of ‘tough love’ to try to get me to straighten up and get well, or rather, to not have been sick to begin with. (As if I’d gotten myself floxed on purpose!!!) Blessings and onward to more recovery!
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Hi Maureen. Sorry you relate to what I wrote. I definitely think cutting toxic people out of your life is necessary sometimes. In my case, I did need the dynamic between my mom and I to change, and to take a little break, but in hindsight the break was too long and I don’t think avoidance was the best way to handle the situation. Really, I should have called more often once things died down, and tried harder to address my issues rather than avoid them (something I struggle with in all aspects of my life). I don’t know. I guess I also didn’t realize how fast time was passing when a month would feel like a few days or a week.
I guess I shouldn’t beat myself up too much, though – I really didn’t know how bad she was doing because she didn’t tell anyone. (I asked her why and she said she didn’t want to bother anyone. :() All I knew was that she started getting off the phone more quickly and abruptly within the past year, so it became hard to talk to her for long. I didn’t know she was essentially hiding her worsening health. But I wish I had. And I wish I could go back in time and do things differently. Hindsight and all…
Blessings and continued recovery to you, too.
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I think retreating is a normal, human response to trauma and illness. Both to be protected when you’re vulnerable and to not contaminate others if it were to be contagious. I have faith that we all do the best we can at any given time with what we have. I am 7 years out. Not a day goes by where I don’t think about how different my life would be. I’ve accepted it to an extent and planned around it (what other choice do I have?) But I have not seen friends in real life in years. I had a big relapse after two strep infections. Hoping I improve again but it’s been over 2 years and I’m still dragging. I also realize more and more how much that drug affected my mental abilities as well. Not being able to pay attention, insomnia, apathy, etc. I blamed myself for anything I failed at and really a lot of it was from the drug. I’m more patient with myself now. I’m working on forgiving myself for my behavior as I realize I was not 100% in control of it. (I didn’t kill anyone or anything but still made some mistakes that cost me jobs and friends). Also new symptoms that pop up. Heat sensitivity and vision issues have gotten to me the past year and limited my driving ability so now I am house bound. And I used to race my car and go off roading and rode a motorcycle. I was lucky to find a work from home position though. Pay isn’t great but it’s better than no job at all and being homeless. But after the last bout of heat illness, it was like looking through a fish bowl and things just don’t seem right. Objects are difficult to track when moving and things just appear off. I have had a few days where my vision was fine and I was able to go shopping. And those days I feel like the luckiest person in the world. And no one understands that. I’ve also hid it from friends but honestly, even when you tell them, they don’t understand. I just get made fun of and told that I don’t ever “want to go anywhere or do anything” when in reality, that’s all I want to do. I am envious of almost every person that I see who can freely up and go do things without a second thought. I really don’t think they know how lucky they are.
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