Friday, 6 January 2017

Dark days, darker nights

I have started this post many, many times, but mostly in my head. I have not actually been writing because, frankly, I have had nothing to say. Nothing good that is. I did not want to write about how crappy I felt, how absolutely miserable, full of pain in my body and darkness in my mind I have been for the past months. Feeling like there is no way I can continue to live feeling like this. It was just not possible. So I didn't write. Because this is what it has been like.

Barely able to make it to bed before falling apart, usually in tears. UTI after UTI. I scarcely remembering what it felt like to not have an infection, to not hurt. To have my feet feel like they are immersed in a bucket filled with icy water. Or the nights the nerve pain made my feet felt like they were squeezed into size 6 shoes for a full day (I wear an 8). My T4 line pain like a burning hot belt pulled tightly around my chest - to the point where I could feel every breath, every heartbeat all the way around. Cancelling appointments. Doing nothing that I didn't absolutely have to do. Nothing but watching Netflix and sleeping until 11am - so not me.

Pain sucks the life out of the living.

All the while I am trying to understand, to figure out why do I feel so awful? I had many months of feeling "good". Why, now, is the pain so bad? What is different? What did I do/not do that I should/shouldn't have done? What did I eat that I shouldn't have? Is is the weather? Is it an infection? What am I not doing that I should be? And worst of all, is it all in my head? It is known that thinking of pain makes the pain even more pronounced. Am I bringing this all on myself? And then my head goes down the road to the will I ever do the things I have planned, travel, work, contribute to society? How?

Dark days and even darker nights. I last, without tears, until about 8pm. After that all bets are off and you would not want to keep my company. Christmas didn't even cheer me up for long.

So what's the deal?

I have no idea.

I have taken no fewer than three urine samples for analysis. All were negative. What? Yeah right. Try again. I got to the point of saying "when you dip it, it will be negative. You have to do a CNS (plate it) and it will grow something." Here I am, telling the professionals how to do their jobs. I was beginning to feel like a real pain in the ass. Twice to emerg. A total hypochondriac. But I knew something was wrong. I could feel it. BUT because my body is so fucked up, it could not tell me what was going on. What was wrong.

Guess what?

I still don't know.

My doctor called yesterday and we had a good chat. No infection. I no longer feel like a hypochondriac, nor a pain in the ass. But I still have no answers. I think I am coming out of this darkness. I think this only because I have felt okay for three days now. Not three in a row mind you, but three out of at least 30. I keep a calendar where I track pain and meds and any crazy shit that my body does. I was, back in November, tracking the days that I had particularly bad nerve pain. Well, I stopped tracking the bad days and instead tracked the good days, which was easier to do. Because there were none. Back at that time the pain was the effect of infection after infection. Three in fact, back to back. So naturally in the end of December I assumed that's what it was.

Now, I think that it was a virus. Or maybe an allergic reaction to the antibiotics (as would explain the hives that have come every night for the past two weeks) and goodness knows my poor gut is feeling the effects of those.

So now I am trying to make my head think that I am coming out of this darkness. I have to be. It was one (maybe two?) months out of 18. I'm no mathie, but in the grand scheme of things, that's not a large ratio. It is so hard to find perspective. The gains are small now compared to what they were at the beginning, and lord knows my expectations are still high, but good things, improvements are still happening. It's just hard to see them. Hard to remember them.

That's where my people come into play. To give me love. Hugs. To remind me that things are happening, getting better. Stronger. Like how, just in the past five days, I have been able to stand in my standing frame without my head spinning (hardly at all). I still need my people. I can't do this alone and my poor family, well they need love and hugs too. What am I saying? Everyone does.

It's funny how writing helps. I manage to spin all these thoughts in my head into words. Words that, in order to reflect accurately what it in my head, should be dark and scary. Moreso now than ever. But here I am, again, trying to find something good. Flipping it. Do I do that because I am writing and others are reading? Or do I do that because I know it will help me feel better. Maybe a bit of both.

And, now I will remind myself that, the sun will come again.

It can't stay dark forever.

(I wish I could remember this when I need it most.)
One of the kids took this picture for me last month. It is the sun rising in the east, through the kitchen window. Windows that I can't see out of because of their height. Not that I could get of of be early enough to witness it anyway. 


  1. Hugs to you and your family! I am so sorry that the last little while has been so difficult and I hope that the three good days you have had stretch in to a week and then another month. You are an inspiration to so many and I respect and admire you for sharing your journey (the good and the less good) with us all. Thank you.

    Maggie Jacula

  2. I feel your pain and think of you open albeit we have never met face to face I have to wonder if possibly it would be possible for you and your hubby to sneak away to a southern location and feel the magic of the,sunshine for a short,while? I know you,have commitments but oh the healing results,of sunshine and the lack of it in our area for the winter. You have come so far my friend and I know it must be discouraging to feel so terrible this far in but surely you will turn a corner and enjoy your life and your family and helping others. You are an inspiration to so many

  3. Perhaps you are discovering that writing about your pain is releasing toxins - REAL toxins, Focussing on the better days of less pain can only be a good thing. It is obvious you recognize your linitations. I recognize your real strength. You are fighting back against the very REAL pain. All those who love and care about and for you are receiving the strength of your words. Thank you for this.

  4. Ah-h-h, it all makes sense now. I have been checking each day for the last 3 weeks and there's been nothing. No posts. I think to myself, "she's not doing well, or she'd be posting ". Why do we assume something BAD has happened, rather than something good??! My heart goes out to you, Julie! It's such a long fucking struggle and you have no idea when or how it will end. The fact that you have not got to some level of normalcy is depressing and demoralizing. Hubby Dan is experiencing the same thing as he recovers from his serious accident. He has made remarkable progress, as have you, but he's frustrated at how slow his progress has been lately, much like you. Dan, luckily, has not been experiencing bouts of pain, as you have. He suffers from acute muscle fatigue, which mercifully is not painful, but it is debilitating. It is so easy for those of us who have not been through a catastrophic event like yours to aay, "oh, you're so strong! You're doing so well! You're an inspiration! " you may think it all bull shit, but it's not! You ARE strong. You ARE doing amazingly well. You ARE an inspiration. You WILL be able to manage those damn UTI's. This is indeed a dark period, (which happens to correspond to the darkest time of year), but i firmly believe in the old expression "it's always darkest before the dawn". You WILL come out of this funk! I personally like the suggestion to go some place warm and sunny. Sun is a remarkable healer...and if that doesn't work, a bottle of wine is a good substitute! We're all rooting for you, Julie!

  5. Mystics write about a "dark night of the soul" - sounds like you're wrestling with a "dark night of the body" which is stretching your soul to the limit. Praying for you.
    Thanks for including us in your "peeps" by writing and thus sharing your journey. Chuck Swindoll observed, "Thoughts disentangle themselves passing over the lips and through the fingertips."

  6. so sorry to read this and can`t even imagine the pain and the dark thoughts that you are experiencing as you continue to recover............hope that your trip south will chase some of the darkness away