Linda Harrison

Two hours of actual sleep last night, by my own rough count. I want to be precise about what I mean, because I think this specific thing gets flattened into "I'm tired" far too easily, and "tired" doesn't begin to cover it. I know what insomnia is. This isn't that. I fell asleep last night. I was, by any external measure, asleep for most of the night. What I wasn't, is rested — and at this point in my life, those two words have almost nothing to do with each other. The hard part stopped being the tiredness itself a long time ago. I adjusted to tired the way you adjust to anything chronic — not happily, but functionally. The actual hard part, the part that still genuinely unsettles me some mornings, is that rest doesn't fix it anymore. I could sleep nine hours tonight, a full uninterrupted stretch, the kind of night that would leave almost anyone else feeling like a new person by morning, and I would still very likely wake up tomorrow feeling close to exactly how I feel right now. The math that's supposed to govern sleep — hours in equals function out — simply doesn't apply to whatever's happening in my body once the lights go off. I've read enough about this by now to know roughly why. Deep sleep is the stage where actual repair happens — not light sleep, not REM, the deep stage specifically, the one where tissue recovers and the nervous system genuinely resets. I know fibromyalgia disrupts access to that stage specifically, which means a full night, by the clock, can pass without my body ever reaching the depth where any of that repair work actually occurs. I'm asleep. I'm just not getting what sleep is supposed to deliver, and there's apparently real sleep-lab data confirming that's not just my own perception of things. Knowing the mechanism hasn't made the mornings easier, if I'm honest. What it has done is stop me from running the same exhausting internal interrogation I used to run on myself for years — am I doing something wrong, should I be exercising more, is this anxiety, do I need a different mattress, a different bedtime, a different supplement, a different specialist. I've tried versions of most of those. None of them touch a problem that was never about my sleep hygiene to begin with. It was always about a stage of sleep my body has trouble accessing, full stop, independent of anything I'm doing right or wrong around it. What I'd actually want someone reading this to take away isn't a tip. It's permission to stop blaming yourself for something that was never within your behavioral control. You can do everything right by every conventional sleep rule and still wake up feeling exactly like I do most mornings, because the rules were written for a nervous system that reaches deep sleep reliably. Yours, like mine, doesn't. I came across a detailed breakdown of this exact mechanism recently, written by a doctor who clearly understands it at a level beyond what most general sleep advice ever touches — and who also goes into why the specific things I tried over the years, the different mattresses and supplements included, were never actually positioned to fix this, because none of them were built to reach the stage of sleep that's actually the problem. There are several other points about fibromyalgia in the same piece worth reading in full, not just this one. If you've ever slept what should be a full, good night and woken up feeling cheated out of it anyway, I'd really encourage you to read what's written there. It explained something to me that nine years of trying different bedtime routines never did.

Two hours of actual sleep last night, by my own rough count. I want to be precise about what I mean, because I think this specific thing gets flattened into "I'm tired" far too easily, and "tired" doesn't begin to cover it. I know what insomnia is. This isn't that. I fell asleep last night. I was, by any external measure, asleep for most of the night. What I wasn't, is rested — and at this point in my life, those two words have almost nothing to do with each other. The hard part stopped being the tiredness itself a long time ago. I adjusted to tired the way you adjust to anything chronic — not happily, but functionally. The actual hard part, the part that still genuinely unsettles me some mornings, is that rest doesn't fix it anymore. I could sleep nine hours tonight, a full uninterrupted stretch, the kind of night that would leave almost anyone else feeling like a new person by morning, and I would still very likely wake up tomorrow feeling close to exactly how I feel right now. The math that's supposed to govern sleep — hours in equals function out — simply doesn't apply to whatever's happening in my body once the lights go off. I've read enough about this by now to know roughly why. Deep sleep is the stage where actual repair happens — not light sleep, not REM, the deep stage specifically, the one where tissue recovers and the nervous system genuinely resets. I know fibromyalgia disrupts access to that stage specifically, which means a full night, by the clock, can pass without my body ever reaching the depth where any of that repair work actually occurs. I'm asleep. I'm just not getting what sleep is supposed to deliver, and there's apparently real sleep-lab data confirming that's not just my own perception of things. Knowing the mechanism hasn't made the mornings easier, if I'm honest. What it has done is stop me from running the same exhausting internal interrogation I used to run on myself for years — am I doing something wrong, should I be exercising more, is this anxiety, do I need a different mattress, a different bedtime, a different supplement, a different specialist. I've tried versions of most of those. None of them touch a problem that was never about my sleep hygiene to begin with. It was always about a stage of sleep my body has trouble accessing, full stop, independent of anything I'm doing right or wrong around it. What I'd actually want someone reading this to take away isn't a tip. It's permission to stop blaming yourself for something that was never within your behavioral control. You can do everything right by every conventional sleep rule and still wake up feeling exactly like I do most mornings, because the rules were written for a nervous system that reaches deep sleep reliably. Yours, like mine, doesn't. I came across a detailed breakdown of this exact mechanism recently, written by a doctor who clearly understands it at a level beyond what most general sleep advice ever touches — alongside several other points about fibromyalgia in the same piece that I think are worth reading in full, not just this one. If you've ever slept what should be a full, good night and woken up feeling cheated out of it anyway, I'd really encourage you to read what's written there. It explained something to me that nine years of trying different bedtime routines never did.

People ask if today's a good day or a bad day, and I've genuinely stopped knowing how to answer that, because the framework itself doesn't match what's actually happening in my body anymore. I know the language for this. I know "baseline" versus "flare," the distinction between widespread pain and an acute episode, I've had this conversation with enough rheumatologists and read enough on my own that I could probably teach a continuing education class on my own nervous system at this point. What I don't think gets said enough, even among people who understand the mechanism perfectly well, is what it actually does to a person to live inside a baseline that never resets. There's no morning where the burning simply isn't there to greet me. There's no version of a day where the ache in my shoulders clocks out, even briefly, the way actual physical exertion eventually does in a normal body. What changes isn't presence versus absence. It's only ever volume. Some mornings it's a low, manageable hum I can think past long enough to function. Other mornings it's the only thing in the room, louder than every conversation happening around it. But the dial never goes to zero. It never has, not once, not for an hour, in longer than I can accurately remember anymore. I used to wait for the good days the way you wait for a weekend — something earned, something coming, a finish line on the other side of enough bad ones. I had to consciously stop doing that. Waiting for a kind of relief that isn't structurally available to me wasn't hope. It was a slow-motion way of disappointing myself on a schedule, so I'd rather just be honest about what's happening than keep performing optimism about a reset that was never coming. What I have instead is something closer to honest accounting. Today is a quiet one, comparatively. Not catastrophic, not my worst version, just the actual baseline, on a morning calm enough that I can sit up, get the coffee made, maybe make it through the rest of the day without anyone noticing anything's different. I think there's a specific, particular loneliness in being asked "good day or bad day?" by people who genuinely care and not having an honest answer that doesn't either alarm them or undersell what's actually going on. So mostly I just say "I'm okay," and what I actually mean by that has very little overlap with what most people mean when they say it. I came across an article recently — written by a doctor, going through several of the actual physiological reasons this baseline never resets, including the deep-sleep disruption that means even a full eight hours in bed doesn't give the body the repair window it needs to come back from anything. I'd read around this topic plenty over the years. This had a few specifics in it I hadn't seen laid out quite this clearly before. If this unbroken, never-actually-zero version of pain is something you live inside too, I think the rest of what's written there is worth your time. There's more in it than just this one piece.

I cancelled on my daughter again this weekend, and I genuinely lost count years ago of how many times that exact sentence has come out of my mouth. I texted her Friday night. Three words longer than I wanted, because I kept trying to find a version of "I can't come" that didn't sound like an excuse, even though we both know by now it isn't one. She said it was fine. She always says it's fine, and she means it — that's not the part that gets to me. The part that gets to me is that I remember being the person who never had to send that text. The one who organized the dinners instead of missing them. The one friends called when they needed help moving, not the one quietly backing out because her body had a different plan that day. I don't know the proper word for grieving a version of yourself that isn't dead, just unavailable most of the time. She's not gone. She surfaces, sometimes, on the days my body allows it — fewer of those lately than there used to be, though I've stopped tracking the exact ratio because it wasn't doing me any good to know the number. This morning is one of the days she didn't surface. Nowhere I need to be, because I already cancelled the place I was supposed to be. I used to be the one who couldn't sit still if she tried — the one setting up tables before everyone else arrived, the one who left every gathering last because there was always one more thing to help clean up. Somewhere across the last several years, not in one dramatic moment I could point to and grieve properly, just in a slow accumulation of smaller ones, that version of me quietly became someone I used to be, past tense, the way you'd talk about an old job or an old apartment. What's actually hardest isn't even the cancelling itself anymore. I've made a kind of peace with the cancelling. What's hardest is watching the people who love me adjust their expectations accordingly, without ever saying so out loud. Nobody's cruel about it. They're patient, they're understanding, "it's fine" is said and meant every single time. But there's a specific, quiet grief in watching someone stop being surprised when you cancel — in knowing that "she might not make it" became the baseline assumption instead of the exception, and that nobody did anything wrong by adjusting to that. I'm the one who has to live inside the adjustment they made on my behalf. I'm not writing any of this for reassurance that I'm still a good daughter, a good friend. I know I am, on the days my body lets me be one. I'm writing it because I suspect a lot of people are carrying a version of this exact thing — the slow, undramatic disappearance of being the reliable one — and almost nobody puts language to that particular grief, because it doesn't arrive with anything dramatic enough to talk about out loud. It just arrives as three-word texts on Friday nights, repeated for years. I came across an article recently, written by a neurologist, that talks about exactly this dimension of fibromyalgia alongside several of the physiological mechanisms behind it — the way this condition takes things from a life that nobody warns you about in advance, long before anyone explains the nervous system science underneath it. If any part of this — the cancelling, the version of yourself you're quietly missing — sounds like your life too, I'd really encourage you to read what she's written. There's more in it than I've covered here.

A coworker told me a few months ago that I "don't look sick at all," and I smiled and said thank you, because I've learned that's faster than explaining what's actually underneath that sentence. Underneath it is nearly everything this category has to offer, tried in sequence, over nine years. Gabapentin first — helped the burning a little, took something else in exchange, gained weight I never got fully rid of. Lyrica after that, when gabapentin stopped being enough on its own — worse fog, faster, not worth what it cost. Magnesium, more than one kind, more than one brand. A four-month elimination diet a naturopath was confident would change everything, tracked carefully in a notebook that now mostly just proves how much time I spent trying. Topical creams I can't even remember the names of anymore. A TENS unit that helped for the twenty minutes it was actually running and did nothing in the hours after. I don't list all of that for sympathy. I list it because "you don't look sick" lands very differently on someone who's been managing this for years versus someone newly diagnosed, and I think that distinction matters. For me, that sentence isn't really about my appearance. It's a small, accidental reminder that almost everything I've actually been through is invisible by design — not just the disease itself, which doesn't show up on a scan, but the years of effort behind trying to address it, none of which left any visible trace either. You can't see a notebook of failed attempts on someone in a hallway. You can't see eleven pounds gained and never quite lost, or a TENS unit gathering dust in a drawer, or the specific exhaustion of being disciplined about something for years with very little to show for the discipline. What I've noticed, the longer I live with this, is that my relationship with trying new things has fundamentally changed shape. I used to hope. Now I mostly just observe, the way you'd run an experiment you don't expect to work but feel obligated to run anyway. I don't say "I hope this helps" anymore. I say "I'll try it and see," and the distinction between those two sentences is the entire difference between who I was when this started and who I am nine years in. I'm not writing this looking for anyone to confirm I look sick enough, or tried hard enough, or suffered convincingly enough to deserve being believed. I know what I've been through. I'm writing it because I suspect a lot of people reading this have their own version of that exact coworker comment, landing on a version of themselves that doesn't visibly match what's actually happening underneath, and I don't think that specific gap gets talked about nearly enough. I came across an article recently, written by a neurologist, that goes through several of the actual mechanisms behind why fibromyalgia is this invisible — not just on a scan, but in everyday interactions like the one I had in that hallway — alongside a few other points I genuinely hadn't seen explained this clearly before, even after nine years of reading everything I could find on this myself. If "you don't look sick" is a sentence you've heard more times than you can count, I'd encourage you to read what's written there. I think it puts language to something you already know but rarely get to see said back to you so plainly.

Nine years of this diagnosis, and a clean scan can still take the floor out from under me for about ten seconds. I want to be honest about that, because I don't think enough of us are. This came back yesterday. Clean. Exactly what we expected, exactly what I already knew it would say going into the appointment. And there it was anyway — that familiar drop, quick and quiet, the same one I've felt before more results than I can count by now. Maybe it really is nothing. Maybe nine years of this has all been some elaborate misreading of my own body. I know that's not true. I've known it's not true for a long time. I know fibromyalgia is a diagnosis of exclusion, which means a clean scan was never evidence against me — it was part of the process that got me here in the first place. I know the mechanism isn't structural. I could explain central sensitization to you in more detail than most general practitioners could, at this point, because I had to learn it well enough to defend my own experience for years before anyone in a white coat took it seriously. Knowing all of that, completely, and still feeling that flicker every single time — that's the part that doesn't get talked about. It's not that I distrust my diagnosis intellectually. It's that some old reflex in me is still sitting in an exam room from a decade ago, before the diagnosis existed, hoping a piece of paper will finally produce proof that none of the doctors before this one were willing to give me. I think about how strange it is that disbelief leaves a residue even after it stops happening. Nobody in my life actively disbelieves me anymore. My current doctor doesn't. My daughter doesn't. And yet some part of my nervous system apparently didn't get the memo, because it still flinches at the word "normal" the same way it did back when normal actually meant something bad was coming. What's helped, more than I expected it to, isn't being reassured again that fibromyalgia is real — I already know that, I've known it for years, hearing it again doesn't move anything. What's helped is understanding the mechanism itself in enough depth that the reflex has something concrete to argue with. Not "you're real," which I already believe. More like: here's precisely why a clean result was always the expected outcome, every single time, and here's exactly what is happening instead, in language specific enough that the old fear has nowhere left to hide. I came across a piece recently, written by a neurologist, that goes through several of these mechanisms in more depth than most of what I'd read before, even after years of researching this myself. Not introductory material — actual depth, the kind that gave me a few new specific details to hold onto, even this far into living with it. If you've ever had that same flicker — years into a diagnosis you understand completely, still occasionally shaken by a result you knew would be clean — I think it's worth reading what she's laid out. There were a few points in it I genuinely hadn't considered before, and I've been doing this for nine years.

I took this photo of my dad's foot one night when I came over and found him on the couch like this. I wanted to remember exactly what I was looking at — because I was tired of him describing it as manageable and I wanted something real to show people if I ever figured out who to show it to. He told me not to make a big deal of it. He always says that. I'm posting this because I know other people are watching the same thing happen to someone they love, feeling the same combination of helpless and frustrated that I felt for a long time, and I eventually found something worth sharing. My dad has been dealing with gout for going on three years. He lost weight. Changed his diet — properly, not half-heartedly, the full restructuring, the meal planning, the saying no to things at family dinners without explaining why because explaining why meant the conversation he didn't want to have. He took his medication every morning. Went back every few months for blood tests that kept coming back looking better. His doctor told him he was doing great. He kept having attacks. Bad ones. The kind where the sock comes off and stays off because there's no version of getting it back on that isn't its own separate ordeal. The kind where I call and he says he's fine in a voice that means he hasn't slept properly in three days. Here's what I noticed watching from the outside that I don't think he could see from the inside. Every attack that came while he was doing everything right took something from him that the next attack didn't have to take — because he'd already spent it on the one before. Not just physically. The slow erosion of a man who is trying his hardest and has run out of ways to understand why it isn't working. He's not someone who complains or asks for help. He goes to the appointments, does what he's told, comes home and minimises it to the people who love him because he doesn't want to be a burden and he doesn't want to admit, even to himself, how much it's actually affecting him. I watched him accept a level of ongoing suffering as just how things were going to be. And that was harder to watch than the foot. I started researching because he wasn't going to. That's just how it works in our family — he manages, I research, eventually one of us finds something useful. What I found explained everything I'd been watching and couldn't articulate. The medication he's been taking reduces how much new uric acid his body produces. It does that effectively — his numbers show it. What it doesn't do is touch the crystals that had already formed in his joint tissue before the prescription started working. Those deposits stay embedded in the tissue. They trigger inflammation on their own schedule, completely independent of his diet, his compliance, or anything the blood test measures. And they don't stay static between attacks — every flare he rides out adds to what's already there. The deposits accumulate, harden, degrade the cartilage around them, and lower the threshold for the next one. Every attack he's been quietly absorbing hasn't just cost him in the moment. It's been making the next one more likely, and worse. His doctor has been looking at a number that says controlled for over a year. His joint has been operating on completely different information this entire time — and getting worse with every attack we thought he'd simply survived. Nobody told him this. Not at the initial appointment when the prescription was written, not at any of the follow-ups since. He'd been blaming his own discipline for a gap in his treatment that nobody had explained to him. Dr. Thomas Whitfield is a rheumatologist who has put together the clearest breakdown I've found of exactly why this keeps happening — five specific reasons the standard approach keeps failing men who are doing everything right, and why waiting makes every one of them worse. I sent it to my dad. He read it. Things started to shift. If someone you love is in this same loop — send it to them.

My husband and I hadn't been intimate in almost nine months. I'm sorry — I know that's an overshare. But I've thought about whether to write this post for weeks, and I keep coming back to this: if one woman reads this and recognises what I'm describing, it's worth it. Because I spent the better part of two years thinking something was wrong with us. With me. With our marriage. When the answer was something else entirely. Here's what those two years actually looked like. Eighteen months into my husband being on allopurinol for gout, I started feeling a distance I couldn't explain. He'd come home from work and be completely spent — not tired, spent, like someone had unplugged him. The closeness we'd built over twenty-two years had thinned in ways neither of us was saying out loud. He'd lost drive. Not just physically — in every direction. Flat. Foggy in the middle of conversations. Coming up empty in sentences he'd started confidently. He told his doctor he'd been fatigued. His doctor told him it was probably stress. He believed that. I almost did. What I couldn't get past was the timing. He hadn't been like this before the medication. I'd been trying to locate the version of that thought that didn't sound like an accusation, and failing, and so I'd said nothing for nearly two years while both of us found private explanations that protected us from looking directly at what was happening. The night I finally looked up allopurinol's full side effect profile, I sat in the kitchen for a long time after I closed the laptop. It was all there. Fatigue. Cognitive dulling. Effects on libido — documented, listed, consistent across forum after forum of men who had written about their experience with a specificity that described the previous eighteen months of my marriage. And their wives, in some threads, who had written what I was feeling in language I hadn't been able to find myself. "They don't tell you that. You have to dig around on the internet to find it out." I wasn't confused anymore. I was angry. The information had existed from the beginning — in the prescribing notes his doctor held, on the information sheet from the original prescription. It had just never been the conversation, because the conversation was always about the uric acid number, and the number was responding well. My husband had been sitting across from a doctor every three months for two years describing a version of himself that was less than he was. The response, consistently, was: your levels look excellent. I pushed for a specialist referral. I went to the appointment with him. She ordered the DECT scan above — the imaging that shows what is physically deposited inside the joint tissue, not just what circulates in the blood. The crystal deposits on the scan were significant: accumulated across years of controlled blood levels, sitting in the joint, triggering attacks independently — visible evidence of everything the standard protocol had never been designed to address. But the side effect conversation was why I'd come. She confirmed it without hesitation. Long-term xanthine oxidase inhibition — allopurinol's mechanism — affects metabolic pathways that extend well beyond uric acid production. The fatigue, the cognitive effects, the loss of drive: documented, real, and rarely raised at the appointment where the prescription is written because the appointment is about the number. There was, she said, a natural alternative. PURGE. Celery Seed's 3nB compound inhibits xanthine oxidase through the same pathway as allopurinol — naturally, without what the prescription had been doing to my husband alongside the gout management. Hydrangea Extract — Seven Barks, Cherokee medicine for centuries, confirmed by modern research — actively dissolves existing crystal deposits in joint tissue. The gap the standard protocol leaves open, visible right there on the scan. Chanca Piedra flushes freed uric acid through the kidneys before it can recrystallise. Tart Cherry handles inflammation. BioPerine delivers the full formula at clinical-strength absorption. I ordered it before we got home. Eight months later. My husband is attack-free. His energy is back. The fog lifted. And the distance — the one I'd spent two years building explanations for — has closed. Steadily, unmistakably, back toward the marriage I recognised. I don't need to say more than that. I spent two years thinking something was wrong with us. It wasn't us. It had a cause. The cause had a solution. Nobody offered us either one until I went looking. There's a 30-day money-back guarantee. I wish someone had shown me this two years ago.