Living in My Own Private Hell

I do apologize for the language in my title, but there really is no other way to describe what living with chronic nerve pain is like. Honest to Pete, just when I think I am coming out the other side of it all or it’s settling (I think I jinxed it in my last post, as has happened to me before), it savagely reminds me of its very existence. As if I need reminding?!?! I’ve been living with the most shrill of shrill ankle pain for years now and quite frankly, I’m so very sick of and from it, literally and figuratively. It is wearing me down and COVID-19 is not helping matters. I’d love nothing more than to be done and over with it, but it is not done and over with me which is resoundingly apparent. I’ve come to understand all too well where the expression, “It’s so unnerving!” is rooted. Its meaning is very real to those of us who suffer the wrath that our nerve synapses seem so willing to dish out. Too bad, I can’t dish a little something back! Talking to it doesn’t appear to help, be it encouraging words, pleas of help or sometimes, some very choice words that I will not repeat for fear of losing some of my readers.

Confession time. When my pain hit a second all-time high post-surgery, as in a pain level of 14/10, my husband gave me a stuffed animal to hold onto for comfort… to this day, I sleep with it. While I’m very embarrassed to admit that out loud to others as a middle-age woman, it is a part of my story and it may help to lend some insight to those who don’t know, the lengths or things that those of us who suffer will turn to when the tough get going, so to speak. That little stuffed lamb that came with a laundry detergent called, Nellie’s, of all things, has endured many, many tears and a lot of very tight squeezes. So much so, that it is looking a little worse for the wear compared to when we first got it. I dare say that I match its appearance these days, so I guess we make a good pairing.

The super disappointing part to all of this for me is that one year ago, nearly to the exact day, I stopped taking my nerve pain medication which was helping to manage it. I had done so because *I* wanted to be in control of what was and is happening to my body, so that I could work to ‘fix’ whatever was needed to get the pain to stop. Something has to be causing it, right?! Determined to get to the bottom of it, I didn’t want the drugs to mask what was going on, provided that I could learn to tolerate the pain (for the most part). Ironically, it appears that my own bottom may well be responsible, as in my gluteus maximus muscles wherein the sciatic nerve lies. The million dollar question is, how do I get it to QUIT firing at the slightest little changes, or sometimes for no good reason whatsoever? That answer is my daily pursuit to peace and overall happiness. I mean, try pasting on a genuine smile inside and out when your ankle is on fire from a cattle prod and the sharpest knife-like pain possible. I try, but some days I just can’t even fake it. I just don’t have it in me.

Yesterday morning was the breaking point for me. Tears which have been building for months began flowing and I could not stop them for love nor money. I sobbed uncontrollably like a baby in the car, at my morning physio session and at work. The day prior I had pain, be it relatively minor, ALL day long while managing twenty-seven little ones during a pandemic in the month of June, nonetheless, whilst being on my feet for upward of ten hours. By nighttime, the intensity of the pain climbed from a three to a seven/eight/nine and the worst part was that it was firing every few minutes, leaving me no time to sleep/rest in between. Immediately, it brought back all of my fears and anxiety post-surgery. I felt as though I was right back in the middle of my own personal wartime, which SHOULD now be a distant memory. But, it’s not. It’s very present! Too present for my liking and it left me no choice but to begin taking my medication again. I felt defeated, exhausted and beaten. It was the end of the line. I think I’ve reached the end of my one-threaded rope.

After letting one of my admin team members at work know that I was suffering from pain, I was able to pull myself together enough such that my little ones were hopefully none the wiser. Not true, actually. They were peculiarly quiet and well-behaved, so I think they sensed (children are amazing at picking up on energy) that I needed their help, and being the little troopers that they’ve been through this past year, they pulled through for me in allowing me to have a bit of break in amongst all of the chaos that this past year has brought. It also didn’t hurt that my meds seemed to be helping to settle the pain right away… thank God! That, too, is unusual, so something must have been on my side by the day’s end.

Last night, I went to bed at 8:30PM, praying for and desperately needing a good sleep. My prayer was answered even though I still feel completely exhausted this morning. As a result, I’m giving myself permission to take it easy today. With mounds of year-end work left to do, that is probably not the wisest decision, but it is a necessary one. I simply need time. Time to recover from what has been and what is, so that I can have time for what will be. I am learning to extend more grace to myself, but it does not come naturally. All that I know is that I am doing the best I can given the circumstances and that is all that I can offer. If it’s not good enough, then too darn bad! I’m fighting a nasty bug here that has nothing to do with COVID-19. Any nerve synapse exterminators out there?! 😂. In truth, I know they do exist by the way, all kidding aside. A good friend of mine’s dad has had a few nerve ‘burns’ done to his neck to try to stop his longtime pain and suffering. The trouble is that that procedure is risky and its results only last for so long with limited repeats. Let’s just say that nerve burns are a last resort. I don’t want to be at a last resorts stage, though I am beyond happy and grateful that it has given him a breath of new life for the time being, hopefully longer! Now, if you were talking about Hawaiian resorts, instead of last resorts, I’d be all in! Last resorts, I’m not ready for quite yet. From somewhere within, I will muster up some ‘Suenergy’ to help tame this awful beast. Somehow, some way, I will beat this thing! I have to.

So today, as I leave you with this post, I will tell you that I am going to leave it in its raw and real stage. I am not going to edit, or read and re-read like I usually do, nor re-think my wording… I’m just going leave it as it meant to be. Far from perfect, a work in progress—-a rough copy, just like me. Have a blessed day, friends. 🥰. May your day and mine be pain-free!

17 thoughts on “Living in My Own Private Hell

    1. Arthritic pain is no joke either. My mom suffers greatly from osteoarthritis and it’s awful, leaving her often sleep-deprived too.

      How did your surgery go? I’m sorry I haven’t had time to do much reading on here. I hope you are recovering well and I greatly appreciate the well wishes, Christine.

      Liked by 1 person

  1. Sue–I am so sorry to read this. I understand about stopping your meds, though. You feel better so the meds must have done their job and who needs them now!? I really do get it. Radiofrequency ablation….we used to send our injured workers to a physiatrist to have that done, in my former job. Do your research on that and on the doctor. This is a specialized field, but it can be a game-changer. I love that your husband gave you a stuffed toy. Whatever gets you through. Take care of yourself. I’ll be thinking healing thoughts for you.

    Liked by 1 person

    1. Someone else has mentioned physiatrists for pain management… I may well have to look into this further. I was silently hoping that time, daily physio and my team of professionals could help me settle it, but all of this while later, I’m clearly going to have to keep looking into other options. I’m desperately trying not to resort to meds for the rest of my life since that’s not really a solution—just a band-aid. I appreciate your kind words as always.

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  2. Beth

    Sue, I am sad to hear that you have continued to suffer such pain! I am glad you are giving yourself some grace and caring for your well-being. During this busy time of year, I hope you can continue to find time to rest and heal.

    Liked by 1 person

    1. Thank you, Beth! We’ve all had quite a ride this past year. I sure hope that you are feeling better and that you found a good position for the fall. Glad you’ve had time with your grandchildren this past while. I’m sure we are all looking forward to the summer at this point in time.

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  3. I can to a very small extent feel your frustration and pain sympathetically. I have recurrent sciatica and arthritis but know it’s nothing like you describe. The tough part is it’s never-ending despite all your efforts to take control, do the right thing, and have ownership of your own recovery.
    I hope they come up with a solution for the pain soon, I think you’ve done your part. I pray that the therapeutic team gets to work digging out remedies.

    Liked by 1 person

    1. As I told another blogger, arthritis (and sciatica) are no fun either! I do sympathize with you. Hopefully, the summer will afford me some time to start looking at some other options for help. I’m not sure I can do another year of this….

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  4. Don’t apologize for writing about your pain, when you have reached the end of cooping with it… We are here to help by listening, and letting you unload your frustration on us.. While there is little else we can actually do except to maybe talk about what is past for us; even if we may not have the level of pain that you must be having… I too, do not believe in masking pain with strong medication. Our bodies are telling us something is wrong, and we must try to find the answer, not mask it.

    The only thing that came to mind for me is a chronic pain which has been with off and on, from school days, when kids put a large stone in the high jump pit, (they were just sawdust back then) thus badly damaging my back and giving me an injury for the rest of my life. When my pain comes on, I only have two things that will help me. First, I use a TENS unit, which sends soft electric pulses through pads much like what they use for an EKG. Such a unit is not much larget than a cell phone and runs about $100. The pulses can be controlled as to volume, timing and wave shape and may not always be where the pain is, but rather a place to interrupt the nerve message. In addition you will need to find where that nerve can be interrupted in such a way as to confuse the pain.. and it may be close to or over the pain itself.

    Until you get used to it, with the proper adjustment, it feels like ants crawling where the pain was, and will not increase the pain at all. If you choose to check this out I would recommend using an Orthopedic doctor to locate the proper place and adjustment to get you started. His unit will be larger and much more expensive~! Then you can purchase your own unit online, not through him, as it may be much more costly that way…. I use four pads making and X across the spot. It really works great for me and usually I am able to fall asleep within half an hour with it running automatically.

    My second option is a common heating pad with hot damp towels on the spot directly where the pain is, to give me enough relief to let me get to sleep…(usually when I am away from home), but this is not near as effective~! Please understand I am not telling YOU what to do, I am telling you what has worked for me, for what is a very serious injury for many years~!

    TENS UNIT: https://www.medicalnewstoday.com/articles/323632

    Liked by 2 people

    1. Wow, thank you so much for all of your thoughtful information. I have used a TENS machine before in my physio. I can’t say that it helped a lot. My chiropractor just mentioned it again the other day and it may be worth another try, at least for my glute muscles. My team has also recommended ice and rest for flare-ups vs. heat, but I certainly have used heat to relax the surrounding muscles which are often tight.

      I’m so glad to hear that both of those things provide some relief to you. That back injury sounds pretty brutal. I’m so sorry to hear of your situation and I hope that you continue to manage your pain and sleep.

      Thank you so much!

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  5. Sorry about your chronic pain, Sue. I know you have probably heard it all, but have you heard of Lion’s Mane mushrooms? They have been used in Asia for centuries and some of the benefits are helping nerve damage repair and reducing inflammation. Just Google it and you’ll get lots of information. Hope you can overcome this crisis, hugs and best wishes.

    Liked by 1 person

    1. I will certainly look into this with my naturopath—never heard of it before, so thank you. Did some Google research on it this AM. I’d try anything short of skydiving and snorkelling, if it would help. I also have a book called, The Brain That Changes Itself to read over the summer wherein I can apparently teach myself ways to help manage the pain. I really appreciate your well wishes. I look forward to some summertime spent in the kitchen too, which always helps in doing something I love, as I’m sure you’d agree. 😊. (I made some homemade buns two weekends ago and they were pretty darn good for my first attempt & not that hard to do.).

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