First peripheral neuropathy … and now a sepsis infection? $%*&#@

Hi again, Debbie (@dbeshears1)

I’m sorry I had to run off the way I did yesterday. I was off to meet yet another new doctor – this time the hospital’s wound care director. You know how those first meetings go – the doctor’s ol’ initial question: “So, tell me, how did all this start?” – and off you go! re-telling the story of what brought you to the doctor’s office in the first place.

The phrase you used to describe the experience of your kidney infection ( … took everything away from my legs… ) is a phrase I could easily use to describe this sepsis experience. That’s very much, if not precisely, what it has felt like: my legs had lost all their integrity. At least with my PN, I’d always felt my muscles had not totally abandoned me; they were only being contrarian, balking at being asked to prop me up the way I required.

There’s more I want to talk about, but I’m having to go slow. Sepsis has sapped my energy. May it suffice for the moment just to say it feels good to be back on Connect, even if able to visit only briefly and occasionally.

Super good wishes, Debbie!
Ray

No need to beat yourself up! We all have trouble giving up our mental image of our younger, fit bodies and our resilience to injury and illness.
It’s hard to accept our “new normals” because they don’t feel normal based on previous experiences. Take care, stay well. 😀

This business of getting older involves a top-down reevaluation of ourselves, doesn't it? Some parts feel older, but others don't. It can be quite maddening. Belly-laugh producing, too, if you keep in good spirits. My best to you, too. –Ray

Ed – I have much the same takeaway as I scroll through the many posts written by fellow PNers whose overriding issue is pain: How fortunate I am to be concerned almost exclusively with poor balance. Since contracting sepsis, I’ve found myself thinking: Sepsis may be Nature’s way of reminding me – a PNer whose chief concern is poor balance – how fortunate I am. As someone said to me only the other day (and rightly so): At least you’ll eventually get over your sepsis; your PN is yours forever. I, too, have bad knees – or one remaining bad knee (my arthritic left knee; my right knee is already a titanium stand-in). However, before March 31, when I had to contend only with balance issues related to my PN, I was managing just fine needing a cane only occasionally. Sepsis, now, has me clattering about following a walker. The chief distinction between the two diseases – PN and sepsis – seems PN never stole my leg strength (it merely messed with my git-about gyroscope), whereas sepsis sapped my leg strength almost totally. Weird stuff, this sepsis. Fifty-plus days of various antibiotics appear to have done their job; I’m left with only a (difficult-to-look-at) 5” wound in my left foot, which is being cared for by the Wound Clinic at a local hospital. I’m due at the Clinic later this morning to be fitted for something called a “wound vac,” the purpose of which is twofold: to speed healing, and to speed closing the wound. (My partner hopes it will help with cleaning the carpets, too. We’ll see.) Good to hear from you again, Ed. Stay strong. Stay well. Stay vertical! – Ray

Hi, @ray666 !
Gosh, Ray, I just now found this thread of conversation started by your sepsis account. Read through all the comments and replies and want to say hello to all who have become my PN friends and to those with stories I have yet to "connect". I haven't been very active here lately, either, but I've been well.

What a total bummer to be dealing with that weakness in your legs. While I am so very glad to be hearing from you again, I am so sorry about the cause of the lapse in posts. I have been spared this kind of complication but boy, I'm taking note of the many tips and suggestions that I have read here. I have no wisdom to offer on this one, except to say that what I know about the human body is, the harder it has to work to correct something that is disordered, the less energy it has to ward off other attacks which are right around the corner looking for an opportunity. It's so easy, when I get behind on things because of lack of energy or weakness or pain, to want to just push through and try to catch up. But what is NEEDED and not on my "to do" list, is: not allow myself to be deprived of hydration and good sleep. Maybe I need an Rx for that!

Isn't it amazing how much time is required just to take care of our own physical needs in this season of life? I never thought it would be this time consuming! When I was younger I loved to peruse used-book stores and generally would find something that I really wanted to read after my working years when I thought I'd have time on my hands (not being a gardener). Ha! Life has become so much time for self-care (including doctor appointments) and so little time to read. Who knew?

Prayers for your healing and return of more strength than you have now. It's good to be in touch! Blessings, Barb

Hi, Barb! (@bjk3)

It’s neat to be in touch again. I’m the true absentee. Sepsis benched me. I find it hard to believe that it was 52 days ago today when I was taken by ambulance to the hospital. I had been a real know-nothing when it comes to sepsis; I thought I’d be back home and posting on Connect in, oh, three or four days at most. Fool that I was!

“But what is NEEDED [is] … not allow myself to be deprived of hydration and good sleep.”

Amen to that, Barb! In fact, that’s worth saying three times over: Amen! Amen! Amen! And right alongside hydration, you can put PROTEIN. What I heard over and over, both in the hospital and in rehab, was my broad-spectrum IV antibiotics would take care of battling the sepsis; my principal job in healing was twofold: (1) get myself rehydrated and (2) load up on protein. I did both with a passion; in fact, I’m sipping some sort of delicious rehydration concoction of my partner’s devising as I type this.

“Isn't it amazing how much time is required just to take care of our own physical needs in this season of life?”

So true! I smile to think that I’m actually looking forward to this sepsis business being over and done with so that I’m able to devote a little spare time to dwelling on my idiopathic PN. 🙂

Keep in touch, Barb! And stay well.

Cheers!
Ray (@666)

Thank you, Ray, for your kind words -- you made my day!
Yep, that protein reminder is just what I needed. That's the topic that came up every time I saw the dietician while I was in rehab two years ago. I'm not a vegetarian but almost. It drove her, who felt responsible for my institutional but temporary nutrition, crazy. 🙄

About that ambulance ride - if it isn't too personal a question, was that because you didn't have strength to walk to the car? In other words, had you already been diagnosed and recognized that you had sepsis?

And on another topic, I also am wondering if you or anyone out there knows why it is not a priority to put those ambulances on a chasis with decent shock absorbers??? Peace, Barb

@bjk3 - You and I have shared so many similarities in our journeys and you’ve reminded me of the realities we face. I can’t help but to keep a To-Do list (formal) or I’ll forget things! I often think of what @njed coached - Focus on what you CAN do, not CAN’T do. So when I see what things are still on my “list”, I am not so bothered because of the thankfulness I have for the things that got crossed off of it. As you said, budgeting our energy for long term survival is key, so we do this one step at a time! I hope you’re moving along well!

@dbeshears1 - Debbie - Wow...you are a list maker as well. Nothing goes on my list that I can't do however, I' will put some things on my list that I might be able to do. Call it a challenge. I made a list this AM of things I need to do today, two have a question mark. For me, it means give it a try. We all have good and bad days with PN. If I can't do it, I'll then put it at the top of the next day's list and yes, with a ? For me it makes me push a little beyond my comfort zone yet being safe. No second-floor window washing from a ladder, you get the drift. Keep crossing things off and smile, accomplishments are important and if you don't get to it today, there is always tomorrow. Stay well, keep moving.

Good morning, bjk3 (@bjk3), Debbie (@dbeshears1), NJ Ed (@njed)

List-Makers, Unite! It gives me a boost to wake up a bunch of kindred spirits.

I will confess, however, that some years ago, I refined my list-making; I was once like so many people and, during a single day, would create a half- or full-dozen “micro” lists: little bits of paper scattered here and there, around my house, on the front seat of my car, jammed in my pockets, inked on the palm of my hand – wherever I’d turned, there’d be another micro list. At day’s end, I’d have all these little reminders of how much I’d NOT gotten done.

I now adhere to what I call Ray’s Principle of One – ONE of each day’s necessary things: one journal (with one good pen attached), one book (whatever I may be currently reading, fiction or nonfiction), one periodical (e.g., the latest New Yorker), one book of poetry (to sustain my spirit; at the moment, it’s the Collected Works of Wendell Berry) – and one SMALL spiral book which houses the day’s micro lists, all side-by-side in one master micro list. (Master micro list? Mmm?)

So again, List-Makers, Unite! Let’s get this day underway. Let’s whip through the day’s lists and look forward to an evening of knowing we’ve gotten everything done. (Or almost everything, anyway.)

Cheers!
Ray (@ray666)