A friend recently wrote me and said (basically), “While I appreciate your efforts in telling people that recovery is possible, I am not going to recover. Too much damage has been done. Some of the damage is irreparable. I just need to come to terms with it.”
She knows her body, so who am I to argue with her? She knows that the cartilage in her joints is not going to grow back. She knows that she will never be able to do the physical things that she used to do with ease before she got floxed, because some of the damage done to her truly is permanent. She will never run, she will never jump, she will never skydive or play soccer.
She has to come to terms with these things – these limitations that were unfairly and unjustly inflicted upon her.
She IS coming to terms with them. As difficult as it is, she is finding peace and acceptance of her current condition and realistic future prospects.
Her story is not one of doom and gloom though. Her story is one of perseverance and strength. It is an amazing, beautiful recovery story.
My friend has come so, so, incredibly far. She was completely paralyzed for a while – to the point where she couldn’t even chew and blinking was painful. Now she can stand and even take a few steps. She is working hard, with physical and mental therapy, to recover. And she is recovering. She is improving every single day. She is working incredibly hard to do things that most people take for granted – chewing, walking, showering, having lunch with friends, etc. She is doing those things. Each one of those things is an accomplishment. Each one shows recovery. Each step that she takes is the result of a huge amount of strength, perseverance and bravery.
I don’t want to go into more details because her story is for her to tell, not me.
When she is ready, I think that she will have a recovery story here on Floxie Hope. Because she IS recovering.
I am lucky in that I have been able to get back to the level of health that I was before I got floxed (other than being horribly out of shape). I can do the things that I used to do before I got sick. But returning to one’s pre-sickness capacity is not the only way to “recover.” Recovery can mean progress. In my mind, recovery means getting to a place in your health journey where you are okay with where you’re at. You’re not perfect – but you probably never were. You’re at peace with what you can and cannot do. Life has gone on. It has been a struggle, but you have come far. You have recovered many of your abilities and you are working on getting more back, but you know that life will go on and that you are okay just as you are. That is recovery that is just as valid as being able to do the things that you used to be able to do before you got sick.
My friend is getting there. She is recovering. And I am very proud of her for how far she has come.
The cartilage in her knees may never come back. It’s the reality of the situation. But another reality is that she has made incredible progress toward an amazing recovery. She has further to go, and she is working on it. She’s working hard every day and her hard work is paying off. She already has an amazing story of perseverance, tenacity, strength and progress. And when she gets to where she feels good about where she’s at, when she can say that she’s recovered, I hope that she’ll tell her story on Floxie Hope.
Sadly, and through no fault of their own, some people don’t recover from fluoroquinolone toxicity. They are hurt too badly to recover. They are hurt in ways that are insurmountable and no treatment can get them to a place where they feel okay about where they are. Some people get worse and worse. Some people die. It’s tragic and it’s wrong. My heart goes out to those people who are suffering, who are not recovering. I am so sorry for your pain. Truly, from the bottom of my heart, I feel sorrow.
But knowing that your tendons will never be what they used to be, or that your endurance is now sub-par, or that your cartilage is too disintegrated to come back, does not mean that you won’t recover. Sure, it means that you won’t get back to where you used to be. But you can still make progress. You can still do amazing things. You can still recover. My friend will prove it.
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Lisa:This is a beautiful and inspiring post. As time goes on, I feel that I too will have an incomplete recovery. And, I’ve got to come to terms with that.
I know I’ve said thank you before, but I’ll say it again: Thank you for the service that you provide for the floxie community. Thank you for your messages of hope.
Lisa, are steroids damaging just while taking fluoroquinolones or any time after taking them? Thank you for the website – it was help when there was none
I was damaged for years and did not know why, I lived at a much lower pace but learned to live like that for years and still had a life, I could go for a walk, I could to out and eat.. it was years of pushing.. this time the nerve damage is so great and all over the body.. my body hurts but I can do that.. my tendons hurt, but I can do that.. the all over neuropathy and losing my feet due to ice frozen cold I cannot do. I am severely damaged by over 340 pills that I can find.. but I understand about learning to pace and improve slowly as I did that for many years.. Now if I could just get some relief from the neuropathy I would be thrilled to make it to the end of the driveway or sit and look at a bird without being electrocuted. so I keep my hopes on that miracle.. I have to keep hoping or I wont try anymore.. Blessings for all those healing,, it can be done, I had gotten through a TON of the stuff.. I pray you will and be at peace inside.
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I think this is right on the money! The key is living your life the best you can DESPITE your illness. And what happens, when you focus on positive emotions and throw in enough distraction, is that the reduction in stress hormones promotes healing. The mind-body link is PROFOUND! FQ toxicity is all consuming because it is so painful, and encompasses SO MANY problems. The problems keep coming, each one scarier than the next. I had a well defined turn around. It was literally made up of one hour where I changed my outlook, for good (not that I didn’t need a lot of reminding), that I was unwilling to “accept” and “manage” my condition. I decided that I was living my life in spite of it. My body may have been broken but my spirit was not. And my spirit still had a lot left to give. I promised myself that I was no longer going to be scared of a new symptom. It would be what it was and I would handle it no matter what it was. I turned to nutrition (information about healing mitochondria from Terry Whal), and used what I knew about health psychology and made a plan. I stuck to my plan and kept getting better. I’m still not 100 percent and may never be, but no matter what symptoms I still have, I feel victorious. My spirit cannot be broken!
Lisa,
Though I’m doing well at four months out and have a good chance at a complete recovery, the thought is always there that my recovery could just stop progressing at any time, or maybe take five or ten years to really be complete. At the same time I’m both hoping for a cure and learning to deal with the real possibility that this is as good as it gets for me now.
I’m nearly 46 years old. My body in middle age is not the body I had in my twenties and it didn’t take Cipro to make that true. I just didn’t need Cipro damage as an added thing to deal with.
But my body has been damaged before, permanently altered, and each time I move on and cope, because that’s what it is to be mortal. I see the scar on top of my foot every time I do ultrasound on my ankles and remember the summer’s day I got that scar, a scar I’ll carry with me to my grave. I was 11 years old and jumped into a lake from a pier, kicking something under the water that cut the top of my foot open. And there’s the tip of my pinky finger that a doctor sewed back on in the Baraboo ER after I nearly severed it chopping onions at a my summer job at a restaurant. And my sore shoulder from a bad lift at the gym five years ago. It’s better than it was, but it’ll never be the same again, not at my age.
Somehow those things are easier to accept because they were my fault– my stupidity. That my doctor’s stupidity injured me makes the Cipro damage different. There’s too much anger attached to it. If I am going to learn to accept my post Cipro body as just how my body is now I have to let go of that anger. I’m finding that very hard to do.