My pain psychologist is very insistent that 90% of my day has to be predictable. This allows my nervous system to heal and re-stabilize to the extent that it can.

I cannot even fathom that. 90% of my day? Do any of you have those kind of days, ever?

Pauline Decamps? I’d love to credit this fantastic shot. Correction invited.

She’s been right about everything else so far, so I’m working on it.

Trying to bring stability to any single part of my life brings the inherent instability of life into high relief.

  • Every commute to the doctor’s office is a crapshoot. There’s no knowing just how long it will take, if there’s parking on the other end, whether anything unpleasantly LA will happen along the freeways on the way.
  • Every trip out of the house, with all the neighborhood dogs and the roads being under construction here, puts the rest of the day on hold until further notice. Especially when my judgment is in the hopper because of pain, dysautonomia, or not being able to eat enough to prevent hypoglycemia.
  • Every day is a mine field of discovering things I’ve forgotten and have to find a way to deal with, trying to clean up the past while coping with the present and preparing for the future.


It’s heartbreaking trying to keep up with this, but I can’t stop. This disease never quits. It never gives a break. I must try to keep up.

I thought I was stubborn. I thought I was adaptable. I thought I could be relentless. I have to say, this condition puts me in the shade.

This is one of those articles I wrote to help myself find the nugget of gold. I’m still looking…


I’m in a very small glass today, but that doesn’t change the scope of work — just what I admit I can do.

This relentlessness, this bitter intransigence, is part of any chronic disease. We find ways to cope, or we don’t make it.

  • I deal with the dietary restrictions by focusing on the wonderful things I can eat;
  • I deal with weakness by learning to ask for help;
  • I deal with the pain by focusing on what gives me joy;
  • I deal with bouts of forgetfulness and confusion by automating as much as possible and using external aids like a whiteboard, checklists, post-its and the apps in my smartphone;
  • I deal with the heart, lung, and endocrine issues by finding new ways to do things, and rehearsing constant self-control in every single freaking aspect of life.

It just wears on me sometimes. It’s a lot to expect of myself day after day after day after DAY.

Perhaps the nugget of gold is simply taking credit for my imperfect, ongoing attempts to manage an impossible body of work: staying alive and on the right side of the ledger, and trying to make it bearable. It takes some doing, and yet I’m here now. The future terrifies me, but so it goes.

Marathon update:

A bloody pair of athlete’s feet, with ringworm that’s trying to consume my right foot, both fungi profoundly resistant to treatment… Have been joined by an ingrown toenail which looks like a grandchild of The Blob… Which itself is hosting cellulitis.

So I’m off my feet for the most part, wearing slippers when I must walk. I have to knock the cellulitis back by Friday, so the ingrown (which is an outgrowth) toenail (though it’s really the flesh) can be cut away, and part of my nailbed stripped. All those loverly nerve endings…


It’s going to be a rough weekend. Perhaps I should just have it all cut off, ha very ha. Too bad that makes things worse in CRPS.

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10 Replies to “Relentless”

  1. Loved…’I deal with the pain by focussing on what gives me joy!’

    I think I will put that on my desk at work to see every day.

  2. I have spent 15 years being a caregiver/care lover to my husband who got RSD from a can of shaving cream falling on his toe.. It took us 2 years plus for him to be finally diagnosed. We have been though 1-2 years of him being almost bedridden about 6 years into it. But let me also state during the early years, he worked full time and was in school to get his RN license. He/we have been thru it all: Spinal Col. Stiimulator implanted on one side of his body and the other side had a morphine pump. To be honest, the pump horrified us both. But he was in such horrible pain, he decided on the pump, which he had for approx, 7 years, In my mind (because I truly don’t want to speak for him). The Spinal Column Stimulator was removed not long after the perm. morphine pump was implanted. Truly the pump ended up being a blessing. There came a time when he did not want something inside his body and it was removed.. After a while, he decided to try Marinol (which is THC)mind y can get it by prescription from your Dr. The Marinol, I can say from a caregivers point of view has changed everything. He is doing better today than he has in years. I’m not certain what type of comments you were looking for, but I just wanted to express my feelings from a caregiver point of view who has gone thru events/pain from nerve blocks and other things unimaginable. Of course we know his RSD can turn on a dime at any morment. He still has horrible flare ups at times. But I truly believe the Marinol is what made the main difference. We are living day by day, but we are living during a time I honestly never thought I would experience. I pray for everyone who has RSD and the caregivers as well. I pray for peace and pain free days for us all. The caregivers experience their own special pain and hell. All I am really trying to get across is no matter how down in the low lands you may currently be in, never give up. Peace and love to all. Chalet

    1. Persistence is all. I’m really glad he has you by his side — it makes even more of a difference than you can know.

      Medical marijuana, in preparations like Marinol or as salve or vapor or whatever, has saved a lot of lives and pulled many of us back from the brink. It’s yet another thing I have to be super careful and very mingy with myself, because my brain only reacts normally to it if I haven’t had any for awhile. But I see others getting their lives and their bodies and minds back because of it, and I am so grateful.

  3. Wonderful post! I know the types of days you mean… those silver linings can be elusive, but we have no choice except to dig around until we find them…

  4. Great post – you’ve certainly given me something to think about. Making our days as predictable as possible makes perfect sense. If only we had more control! Thanks for letting me know I’m not alone in dealing with this stupid disease.

    1. Believe me, Becky, you’re in very good company. There are some wonderful bloggers with this — elleandtheautognome, princessinthetower, Sylvie Ghysels (who blogs in French and English), and more. This disease burns away everything that isn’t essential, and when you see people at their truest core, it can be breathtaking. Best of luck with wresting order from some of the chaos!

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