Tag Archive | Chronic pain


What is this new feeling I have lately? It seems to be a new flavor, a mixture of several. I’m feeling calmer, not exactly at peace, but not so turbulent either. The sadness is still there, a deep underlying sadness that I’m sure will always be there. I have less anger.  I have less ambition and determination, less fight in me. I think this is a good transformation, or if not good as I don’t like weighing in with good and bad, lets say a necessary transformation, though it feels odd.

I think perhaps my spirit is finally broken, tamed, like a wild horse, I have been broken. Even more, I’m the wild horse forced to live out its days on a carousel. carousel-1703273_1920.jpgI am resigned to live my new life, accepting the constraints of the saddle and bridle and staying within the limits set upon me. I’ve been trying to be free for far too long. I don’t need freedom to do good. There is much I can do from here and it will have to be enough. I can be grateful to keep moving, if only in circles.

I searched for words for this feeling and I read the synonyms for resigned, I feel this is exactly where I am right now. Look at this list…tame, agreeable, long-suffering, stoical, patient, tolerant, gentle, quiet, ready…I could describe how each of these words fits me.


A few days ago this feeling settled in and said hello. I’ll describe that day here, because it has taken me several days to say hello back.

I can’t rely on my memory any more. When smartphones first came out I ridiculed people for spending so much money on a device. Now I can’t live without mine, as it truly thinks for me, reminding me all day long about what I’m supposed to be doing. So I check it as usual and see kiddo has a baseball game. No problem. No other conflicts. I know I may have to drive him, so I plan my time so that I am rested.

When he gets home from school I look again and see it is an away game at a ballpark I am unfamiliar with..and I map it and see it will take nearly an hour to get there. I remain calm as I tell kiddo we have to leave very soon. He asks for his uniform. Crap. I forgot to wash it. All my checking on the game and calendar nothing jogged my memory for this detail. So I add “wash baseball uniform” to my calendar so I don’t forget again and he has to wear it dirty for this game, luckily he didn’t do much sliding it didn’t look terrible.

I throw away my feeling of failure, no time for that. I feel calm again. Kiddo needs a snack. Make him a sandwich to eat in the car, except I forgot to go shopping, used up the bread this morning. Crap. quickly slice some cheese and grab pretzels. That feeling in my stomach again, like I should be doing better, but I have to ignore that. I make coffee while he gets dressed.

Out in the car my phone wont let me get the address for the gps. We are already late. I can’t think clearly. I call hubby from the driveway for the address. I enter it the address and pull out while it it loading. But then I can’t see the screen on my phone. I hand the phone to kiddo and ask him to adjust the brightness, I had it turned way down and couldn’t see it in the sun. He didn’t know how. What? How does he not know this, its just just his kindle, but I have no time to feel irritated. At the next red light I adjust the phone myself and see the gps is still not loaded. I know I have to get on the highway but I have no idea where to go after that. Anxiety is rising. Breathe. Its okay. I pull over and really look at my phone. I notice the cellular data is turned off…oh yeah, I did that at his last game when I was playing a game on my phone and didn’t want to use data. Crap. That has been off for 3 days.

I turn data back on and my phone blows up with all the queued MMS texts that could not come through. Crap. All that missed info – yup, thats why I didn’t know his last practice was a different time, and so much from school, but no time now to feel stupid. GPS is loading finally so I get back on the road. I don’t look at the clock. We are late, I already know we are late, and the clock won’t change that and I don’t want to feel nervous while driving. Kiddo is chatting about his school day. I can barely understand him, my head is racing and I have to focus on driving, but I say “uh-huh” a few times.

We make it off the highway, and into these terrible, but beautiful, twisty turny hilly roads. I’m getting motion sick and driving slower than the speed limit. Crap. We are so late and I can’t even drive full speed. We go through forest lined roads, past green mucky ponds, further into the valley. We make it to the ballpark, and can’t find his team, there are several fields and games. We spot his uniform color and I see the closest parking lot is full, so I continue on. We got there. Sigh of relief. He grabs his gear and heads to the field. I stay in the car.

Why do I stay in the car? So many reasons, where to start.

  1. my limp. Okay so this place is full of steep hills and slippery gravel. I did not want to attempt that steep hill and the only other way that was not so steep was about a quarter mile away and through the grass fields, still difficult. Even with my walking stick and new knee brace, these distances look like miles and miles to me, it is just so difficult to walk across. And I feel stupid, like everyone must see me coming.
  2. neuro issues. It was hot out and no shady places to sit even if I did manage to get myself down there, so I stay in car with AC running, my meds make me dangerously heat intolerant on top of the struggles I have to self regulate due to nerve damage. Sitting in full sun also triggers migraines
  3. my limp and social issues. no places to sit at all, I would have to carry my own chair which would be very difficult on the already difficult terrain. If I had ever spoken to the other parents, yes I’m sure one of them would carry a chair for me, but then I feel like I would be stuck sitting with that person and forced to be social. I can barely manage my own life I don’t want to hear about theirs, it is too much, never knowing what people might share or ask me.
  4. anxiety. If I managed to get myself down there and find a place to sit, I didn’t see any place to be quiet. Some of his games I can put a chair at the end of the line of parents off by myself enough that I feel I have my own space. But here with so many games going on at once, cars and people constantly coming and going, There was no way to position myself safely, I’d be jumpy and startled the entire time, and I can’t do that – I have to drive back home
  5. mental fatigue. I can’t pay attention to the game. Sorry kiddo, I’m proud of you for working hard, but baseball is dreadfully boring and I have no clue what is happening even when I do try to focus it makes no sense and my mind wanders. I usually bring my camera when I sit near the game but in my car I can close my eyes, read a little, play a game on my phone. And they last for hours, too exhausting to pay attention that long to anything. So I try to watch for when its his turn at bat and a few key plays when I hear the crowd get excited, otherwise I reserve my energy for the return drive

Thats about it I think, though I think I jumbled them up a bit even though I tried to organize it in a nice numbered list, hope it makes sense.

I’m just trying to illustrate how this simple task of getting my kid to his game is not simple for me. I can barely do it. I try to be grateful that I can still do it, at least be useful and get him where he needs to be. But it is difficult to watch the other healthy parents, hooting and hollering, running down that gravel covered hill like its nothing, carrying chairs and coolers, sitting and chatting with their friends, they seem to really enjoy the experience. I don’t know this, of course. I’m only giving my observations and they seem to enjoy the game and the social time with the other parents. I’m not a part of that world. I live in a different one. Am I jealous of the other parents? In some ways, yes that is likely what I am feeling. Anger that my life is so difficult. But I can’t stay there long or it festers. Acknowledge and keep moving because life does not slow down for me.

My life is often surreal. Like I’m in slow motion or everyone else is on fast forward. They walk and talk and think faster than I can. I am no longer trying to keep up.

I am resigned.


Behind Sad Eyes, Green Eyes, Blue Eyes

I’ve had the echo of a song in my head for days and was struggling to place it. My memory gaps have hit especially hard in the musical and lyrics area. I can no longer sing along to songs I’ve known my entire life. I kept getting the phrase about sad eyes and this haunting melody, and thanks to the miracle of google I figured out it was The Who “Behind Blue Eyes”. Makes sense I made it sad in my memory since this song expresses such pain. My eyes are not blue, they are green, but they are sad, always sad, even when I smile and laugh, the sadness never disappears. I see it in the mirror, I see it in every picture, others see it too – if they actually look.

I wanted to share the song here, and I found a lovely cover instead, by Janet Devlin, who may be a magical Irish elf, her voice gives me chills. Be sure to check out her other songs when you get a chance. Her singing this song gave more meaning to me. I look a bit like her. Or I used to, a few years ago. When I visited Ireland everyone thought I belonged there, finally no one thought I was too pale. My hair was redder before the whites took over and I had to color it browner than my natural shade, because I’m allergic to red dye, of course.

Anyways, here’s the song, have a listen, then I’ll talk about why its on my mind.

I am not well. I am not doing well. I am not feeling well.

I need to find a way out of this hole. I’m not sure that this is depression exactly, as I’m eating well, exercising, have good hygiene, going through all the motions that usually stop when depression hits. Some of the grief has lifted for losing my parents so that has actually improved.

But my attitude is terrible. I’m angry, irritable, annoyed at the world. I really don’t want bothered. I’m finding every human to be a huge nuisance and I keep them as far from me as possible.

My life is difficult. I spend my days doing physical therapy, brain rehab, and vestibular balance exercises – all to keep from getting worse – nothing seems to be improving. I’m tired from this constant effort and getting nowhere. But if I stop I do decline rapidly, so I know its important. My knee complaining in its brace and my new sciatic pain is proof of that. I have to keep up my strength and flexibility or I hurt myself when I try to do something so outrageous, ya know, like walk on a slightly uneven path to take a photo of a wildflower. That was over a week ago and I’m still in so much pain I can barely walk across a room. I am waiting to see an ortho for the nice popping sound my knee is making.

Yes I’m complaining. I’m in a sorry state of mind, a dark, foul pit. I don’t like it here. But I can’t pretend I’m not here and conjure up some rainbows.

I stopped at the liquor store the other day, held the bottle in my hand, put it back on the shelf, and went back out to my car to cry. I have not used alcohol to escape or hurt myself in years. I was very close to it. I wanted some freedom to not feel like this. But I know it will hurt me, cost me loads in recovery, and cost my family too. So I put it back.

It seems my only tool is distraction in the form of video games, netflix, and sleep. I can’t keep up on the video games any more, so I play them and try not to care that I don’t do well, my reactions are so slow now, my visual processing delayed. I exist in this zombie state of tv and light sleep mainly that passes the time when I can’t do anything else.

I actually hate my life. I do not look forward to anything. I hate that I wake up each day. I try to be grateful and feel horrible that I genuinely am not. I don’t want this. Yes I know it could be worse. I could be blind or deaf or in a wheel chair. I don’t feel grateful to sort of be able to kind of walk a little.

My daughter was being silly this morning, and for a normal human this would have been silly. They were ringing a bell and placing it on each other. She got it ringing and came up behind me and touched it to my ear. I screamed in pain and lost my balance, barely catching myself on the counter. It is hours later and I can still feel the fullness in my ear, the tingling in my face, the pain in my head, and the after effects of that much adrenaline. I nearly blacked out. From a random sound near my ear. Yes the doctors have documented all sorts of abnormal acoustic reflexes for me that activate my central nervous system. No the doctors can’t do a damn thing about it. My daughter was scared to death by my reaction and I had to minimize the pain I actually felt, try to gather myself together, recover, and get them off to school with partial tunnel/slanted vision. Sometimes I’m not sure I should be driving like this, but I seem to be able to see through it as long as I’m careful. I never take chances, I wait until no cars are there before I pull out. Sometimes I can’t see well enough, and then I don’t drive. My ears are still ringing, screaming from this morning. My nerves have otherwise mostly calmed back down.

I hate living like this. How am I suppose to heal from PTSD when my world is actually hazardous to me, when ordinary objects: sights, smells, sounds – can overload my brain and ruin my day in a second? So yeah. I am paranoid. Looking for things that will hurt me, make it so I might not be able to walk or drive home. I have gotten stranded too many times. I have people relying on me, with schedules, or it might not be so bad to be patient and wait it out.

New doc adds chronic pain syndrome. Basically means I’m a nervous wreck. Yeah seems to fit.

I’ve just been stuck here too long. 3 years now since I stopped working. I’m in the middle of applying for disability which is not a fun process listing everything wrong with you. I know that’s part of this dark mood, that horrible paperwork.

Another part I still the constant stress from Hubby and this broken relationship. Most days right now my dislike and resentment for him border on hate. I have repeatedly told him I have no feelings for him and he continues to try to get affection from me. I have no where to go, no money, no family. I can’t leave him and he won’t go, so I am stuck in this house with him. We try to be good to each other, make a pleasant home for the kids while giving each other space. But then he gets lonely and “forgets” some of my biggest triggers, like touching me while I’m sleeping. He did it again this morning. Maybe another wife would like to be woken up with a foot rub, but for me it is terrifying, and I hate having to tell him to stop, and I hate the mental workout it takes me to be able to say stop, and I hate the anger I feel, and I hate the fear, and I hate the fatigue that comes afterward. Just leave me alone.

I feel like other people get a break from stupid life, get to enjoy things like games, concerts, movies, festivals, amusement parks, sports, camping, boating, painting, writing, reading.

I have nothing. I can’t tolerate anything for long. I lost my ability to create, and I can barely experience what others have created without causing myself pain. I’m trying to find balance….trying….but these scales seem tipped, not in my favor at the moment and I don’t know if my rotten attitude is blocking the solution or this is how it has to be.

I am such a mess and need to rant

I can already see my therapist’s face as she nods, scrunches up her eyes a bit, and quickly writes notes about me tonight.

I can already hear her saying it will all be fine, that I’m being too hard on myself, that I need more time to recover from the stress of January. That it will get easier.

I can already feel myself not believing her, or not caring.  I’m ready to call bulls**t. I don’t believe that line any more. It will only get harder, and that is my new wisdom.

I’ve been here so many times and I am fed up. I’m tired of fighting. I’m tired of trying so hard. I’m tired of being the strong one. Just for once I want to be taken care of. I don’t want to be needed.

I want to NOT hurt. I’m so done with pain.


“Pain”: I love French Pain so much more than what my post is speaking about, doesn’t it look delicious? And it will go nicely with my stew in the next paragraph. This made me laugh out loud(Photo credit: zigazou76)

Today I am going to sit and stew in all of my problems. Roll around in them and really get dirty. I think maybe, just maybe, I might feel better if I just have some time to say ouch, yes, you really are a mess. I won’t stay in it forever, but I need to own it and accept it. Maybe.

Here’s the thing, I have so much to complain about today that I could never cover it all in one hour with my therapist. So I am writing the longest post ever to get it all out at once. I know everyone will skim through and nearly faint at so many words at once, and that I am breaking every blogging rule with this long post. But I don’t want to extend this. I want to get it over with. Here it is. All of my physical problems listed in one place. Turn away now if you don’t have time for over 3000 words. There is no gold star for reading it all, and there will not be a test, and nothing inspirational here.

My spine has been hurting for 30 years now. First at age 8 from the scoliosis itself, then at age 10 from the bracing, then at age 12 from the surgery and nerve damage during the surgery, and now from the nerve damage plus arthritis, bone splinters from the fusion grafted bone deposits, and continually compressed discs from the parts of the curves they were unable to straighten near my neck and pelvis. The clamps on the rods in my back tear into my shoulder muscle. Luckily it is nearly all scar tissue now after so many years of rubbing across it, so less pain, but nearly no range of motion. Still terrible pain if I move my arm out too far too quickly and find a new spot to tear. Lately my spine feels like it is on fire. Lifting anything causes terrible stabbing pain in my bones, and crushing nerve pain in my legs and feet.

Why haven’t I seen a rheumatologist yet for the arthritis diagnosed by family doc?

1. I hate doctors.  They never listen to the whole story and push pills to get you out the door. They order expensive painful tests and then tell you, sorry, can’t help you. They treat me like I am stupid or lying or both.

2. I hate taking meds. If I say I am in pain they will tell me to take advil or aleve. If I say I do and still have pain, they may offer a stronger nsaid that rips up my belly. They may offer narcs that leave me unable to function. no thanks.

3. I hate medical bills and already have so many in collections I can’t keep track of them. enough said.

4. I am special. Not in a good way. No neurologist wants to deal with me, too much of a liability I think. They do the exam, see my dropfoot and weakness, see it was caused by a surgeon, and kindly ask me to leave. No ortho doc wants to deal with me since the original surgery was a pediatric doc. The original doc did see me at age 27, and said nothing was wrong, but he understood it would hurt. Nothing to do, except stay in shape and have strong muscles. Yes, well, nerve damage has made that tricky, sir.

My heart has been off-beating. I have mitral valve prolapse that I’m supposed to get checked yearly. Why haven’t I been to my cardiologist in 6 years then?

1. I hate doctors. He will tell me to avoid caffeine and alcohol. I need those. I need something to relieve the pain and offer me some joy in my life. A good cup of coffee and a nice cherry whiskey can get me through some very bad days. I have found an amount of caffeine that seems to not aggravate my heart by making my own half-caf mix.

2. He will offer beta blockers. I feel like a sloth in molasses on those.

3. He will want to do EKG and echocardiogram and cost us thousands of dollars to tell me it hasn’t changed much. I already know this. If it feels different I will go check it out.

4. I am special. My PTSD and anxiety work with my valve issue and play off each other. I have learned to control the tachychardia with the same breathing and focusing that I do for flashbacks. Also, just not laying on my left side helps reduce pressure on the valve. And my weak leg already guarantees I don’t take up strenuous sports or try marathon running.

I have an ovarian cyst that gives me trouble. It was first discovered at age 15, when it burst and it took 2 days of my pain that turned into fever to finally get checked out (because I paid for my own doctor trips back then or had to beg my dad to let me use his insurance and to drive me there) By that time the pelvic infection was so bad they were afraid I would have permanent scarring and be infertile. They had me checked for ectopic pregnancy which started loads of lovely days of my dad calling me a whore and making me pay him back for the treatment.

I’ve had pain every month when not on the pill, as that cyst moves or bursts. I can’t handle the pill, it causes severe headaches and depression. (That falls under the I’m special category) My last pregnancy I kept getting stabbing pains when baby would kick that cyst, but had no idea what it was, and no one investigated because it is ‘supposed’ to hurt when baby kicks. I had a monster of a cyst, oddly sausage shaped but benign, finally removed about 3 years ago after nearly passing out from a knife like pain mid cycle. I guess it grew strands of tissue and attached itself to my bowel and other innards and would pull on things that should never get pulled on. ever.

Why haven’t I been to an OB/GYN in over 4 years?

1. I hate doctors. I really hate doctors with stirrups. enough said.

2. I will not go on the pill to control a cyst.

3. I don’t want an ultrasound or another surgery. The dumb thing grew back, and I know one day will need removed again, but for now I can handle the few days of pain, and try not to twist and lift and have it pull on anything in there. And have hubby aim to the left. no problem.

4. I am special. It takes everything in me to allow a doctor near me, and to avoid flashbacks there. I went like a good girl for each pregnancy and basically became numb to it all. But now after so many years without stirrup exams, the fear is back, and I don’t want to go. Also, I secretly hope for cervical or ovarian cancer, discovered too late, because I want a ticket out of this life. (see yesterday’s post)

I get terrible, shoot me now, debilitating migraines. My first full on migraine I thought I was having a stroke. I saw funny lights, felt like a shovel removed half my brain and filled it with mud and nails. My left cheek and arm went numb and tingly. Sound and lights and motion hurt. And then the vomiting, both from the pain itself and also from the sensory overload. I did go to doctors and tried different meds for many years with little relief. Somehow I graduated college summa cum whatever with migraines so bad I would have to pull over on the side of the road and wait it out, too blinded by halos and pain to drive. I think now what I put myself through. And for what? A huge student loan I will never pay off, and a career that ended in 3 years due to my depression, stress, and trusting bureaucrats to keep track of my teaching license. I will never be able to afford to renew that license. And I don’t want to go back into the classroom anyway and train students to stop thinking and conform and answer standardized test questions. I feel sorry for current teachers, and helpless to fix a broken system. Not sure what I was thinking. I actually thought I could make a difference and make education better.

My migraines are under control I guess, since I work from home I can strap an ice pack on my head as needed. If I also take a Sudafed at onset, keep my head very cold, and lay down in a dark quiet room at some point, I can usually prevent a full blown migraine and just have a mild headache.

1. I hate doctors. They don’t believe that my ice and Sudafed method works, and that I was likely not going to get a migraine anyway.

2. migraine meds have terrible side effects, including headaches. gotta love that.

3. migraine meds are expensive. Sudafed and ice are very inexpensive.

4. I’m special. I read a lot. too much. I understand that migraines are caused by blood vessels spasms. Sudafed constricts tiny blood vessels, and the ice reduces inflammation and dulls pain receptors. I don’t go out much, so an ice pack on my head does not interfere with any fashion statement I make here at home in sweats and jammies.

My tummy is a train wreck disaster. Inside and out. The same nerve damage low in my spine that caused weakness in my leg affected parts of my tummy area. Luckily I got the type of nerve trouble that makes it difficult to evacuate bowel or bladder, and not incontinence. See? I am grateful for some things and realize it could have been worse. But I’m still going to own the suckiness of this today. I don’t know when I have to go. I don’t get the early warning signals and often rush in an emergency, usually making it on time, since again, I am usually at home. When not at home I just go often to make sure I am empty. Speaking of, since I can’t push with full strength, my bladder is often not completely emptied and I get bladder infections easily. I have found that cranberry juice or pills with lots of water help this. And of course occasional antibiotics too. The other end, I will spare you details, but just say I have to help myself to evacuate sometimes when my muscles choose not to push that day at all. Not fun. So I live in a constant state of IBS, going from one extreme to the other as my system tries to deal with mixed up nerve signals.

I have also had GERD, acid reflux, and bleeding ulcers. After years of antacids, and prescription acid reducers, I realized I need that acid for proper digestion and as part of my immune system. I got off antacids and actually starting treating myself with more acid. I took a large dose of vitamin c with every meal. And probiotics. Turns out my acid reflux was because food was not digesting quickly enough due to low acid, not high acid. Stomach won’t empty into intestines until enough digestion has happened. I no longer have chronic reflux, just occasional when I have too many wings, beer and pizza, and well, I deserved it. I am grateful I can swallow without pain.

After babies my gallbladder went funky and I couldn’t eat lettuce for years. It got better on its own just by avoiding things that irritated it. That seems to have healed now and I can eat salads again without pain! I am grateful for this, since greens are important to our health, on top of being an easy tasty lunch.

Outside my tummy is a maze of scars, from stretch marks and C-sections, and cyst removal. But that’s ok, I never was a bikini wearer even when my tummy was cute, flat and toned. But sometimes I catch sight of my tummy in the mirror and stop and stare in shock at the damage. My skin does not stretch or scar well. I still have shiny pink stripes every where, no fading, no blending. Looks like I was mauled by a tiger. Which I am grateful I was not.

I have so many allergies and sensitivities. Some things cause asthma and wheezing, like scented candles. Some scents just cause headaches and dizziness. Scented lotions or soaps cause rashes. Some adhesives cause rashes. Hell even the sun causes rashes. Finding out new allergies is not fun. I found out about the red dye allergy when my feet swelled up with red itchy welt that looked like I had been whipped across the top of me feet. The culprit? The cute new dyed leather sandals I splurged and finally let myself buy. Then it was the new hair dye with the reddish auburn tint close to my natural shade causing similar welts on my scalp. Turns out it was the same ingredient in both dyes. Soaps are usually milder than that, causing a sandpapery, scaly itchy rash. But adhesives? Ouch. They seem to melt my skin right off. I discovered this one during my heart valve diagnosis.  I had to wear a heart monitor for a month to catch the episodes. The first set of leads they gave me starting hurting in less than an hour, and by that evening had to come off, because I was oozing out from underneath them. Painful and itchy.

When kiddo was in the hospital he reacted to one of the medical tapes and the doctor asked if he had an adhesive allergy. I said I didn’t know he did, never having been covered in tape like this before. But yes, as we can both see that angry red rash appearing, I’d say he does. (I hate doctors)

The sun allergy shows up each spring. Basically I have to slowly wean myself up to full sun exposure each year after not having any for so many months. It is basically tiny raised hives every where the sun touches my skin. So those first glorious days of spring, when you just want to soak up every ray, you won’t see me out there for long. Just enough to feel the warmth, then I go back in and hide and cover up with sunscreen. Why aren’t I on treatment?

1. I hate doctors. They just tell me to eliminate whatever I have a reaction to and don’t seem bothered by the long list of eliminations. They tell me to keep my home free from dust and pet dander. I laugh.

2. I do take antihistamines nearly year round. Loratidine is the only one with minimal side effects. It does not cure, but makes allergies not as bad. All other ones I have tried put me to sleep, make me nauseous, make me stupid and foggy, give me nightmares, or make my depression worse. (antihistamines are closely related to Prozac chemically) When they get bad I use Benadryl and have a nice nap.

3. I have not had an allergy test done since I was little. I was basically told I was allergic to everything that grows and makes pollen. I believe that is still true. I have never had food allergies tested, and although I am curious, not that curious to get poked and pay for it.

4. I am special. cortisone creams do not work on me. I get a poison ivy type rash from contact with most any plant. I hire someone to mow the lawn while I stay inside with the windows shut. I hire kids to do the weeding. I gave up on gardening. I usually do put on my extremely large sun hat, a covering of sunscreen lotion, thick rubber gloves and do some yard work a few times a year. Then I come right in and shower to get it all off of me. Then I wait for the rashes. Why are you staring at your arm? I’m waiting for the rash. See? Makes life exciting.

Oh, I nearly forgot the motion sickness. I can barely spin during the hokey pokey without feeling dizzy and nauseous. I get motion sick every time I am a passenger and sometimes even when I am driving. I have thrown up on more people riding next to me than I care to admit. Tiny planes? no way – with bonine I can manage the big ones. Amusement park rides? Not amusing. Boats of any size? Impossible.

Yes I am that messed up.

Wow that felt good pouring all of that out. I feel like I forgot something, but that’s enough. I talk all about my brain on this blog, and thought my body needed some more attention. I need to complain once in a while. Not to get sympathy, so please don’t respond to this with a bunch of I’m so sorry for you. It sucks and I know it sucks. but just once in a while I need to understand that my life is hard and full of pain and own that suckiness. Not to compare to anyone else. Just to be me, all of me, even the parts I usually try to hide or ignore.

My reality is that I will continue to hurt, mentally and physically every day of my life. The arthritis will get worse, the heart valve will get worse. Menopause may cure the cyst problem, maybe that is one thing to look forward to? The kids will get older and have more serious problems. They will find drugs and sex. They will have breakups and heartaches. My genes will surely predispose them to having ulcers and migraines. I am praying they don’t get scoliosis or heart problems. Some days the worries of how they may be hurt some day overpowers me. I can’t control everything and keep them safe.

Maybe that partially explains this funk. That I was not able to prevent my kiddo’s sickness. That this won’t be the last time their lives are in danger. That I can’t keep them wrapped tight and safe in a baby sling any more. I don’t know if I am strong enough to watch them grow up. Make them do hours of pointless busy work every day, protect them from bullies and cyber threats. I can’t pay for them to go to college. I can’t help them. I don’t want to watch them struggle.

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When the Sandman is Just Messing With You

As I sit here trying to shake the desire to sleep – at 11am – I’m thinking more about my sleep issues. I’m wondering what I did to tick off the Sandman, that he messes with me like this? No sleepy today, too much sleepy for the next 4 days. How do you get on the Sandman’s good side? My previous post showed what wakes me up when I do get to sleep. But the flip-side, is I suffer from extreme sleepiness at the wrong times of the day, most days, and have for most of my life as well.

Here’s an interesting blog about chronotherapy: http://opinionator.blogs.nytimes.com/2010/04/19/sleeping-or-not-by-the-wrong-clock/

From the article: I have the light therapy unit I use in the morning. I have never tried melatonin. And this excerpt made me think:

Depression, of course, can become overwhelming, far more severe that it was for George. And sleep itself actively feeds severe depression — a vicious cycle that needs to be broken. A therapeutic full night awake under observation in a hospital setting instantly relieves the depression in about 60 percent of patients. This is one of the major, surprising findings of biological psychiatry. The problem is, after the next day’s recovery sleep the depression is likely to return. So the benefit is only ephemeral.

To counter the relapse, we begin daily light therapy at the end of the wake therapy night, enabling the circadian clock to readjust, with the result of sustained remission. [1] The benefit is enhanced with a very early bedtime the night after wake therapy, and early rising after recovery sleep. In patients with bipolar disorder, the effect is further magnified by the use of lithium carbonate, the mood-stabilizing drug.[5] A manic reaction is very rare, but it can be quickly dampened by staying in a darkened room for 14 hours. Such dark therapy can be just as effective as anti-manic (anti-psychotic) medication.[6]

Sleep feeds depression? I believe it. No sleep feeds mania. I believe that too.

But, and this is a big BUT, I am trying to keep my life going here and can’t stay up all night and then spend the next 14 hours  in a darkened room in case mania appears. I don’t know about you, but I’m fairly certain spending 14 minutes, let alone 14 hours in a darkened room with nothing to do would cause my mind to go wild, and it better also have padded walls in there. Or I would happily fall asleep. One or the other.


Places I have unintentionally fallen asleep over the years:

  • At my desk at school
  • On my work break
  • In my car when I stopped at a red light
  • In Team or Business meetings
  • In college classes
  • In Doctor’s waiting rooms
  • In the dentist chair
  • In the bath tub
  • On a park bench
  • In a taxi
  • At my computer

I don’t have narcolepsy, I know I am sleepy, I am fighting it when it happens. And I just do the head bounce and fall asleep for a moment thing – but it can be an extremely embarrassing or even dangerous moment.

When I was student teaching, I recall a school that was about 45 minutes away from home. I started planning on 1.5 hours travel time, so I could stop midway in a parking lot and nap for 15 minutes to avoid falling asleep at the wheel.

When I was teaching, after teaching all day we would crowd into warm, tiny rooms, darken them, and someone would put slides on the screen and speak in soft voices – that always got me. My head would start nodding, and the yawns would get so difficult to stifle. The school day started way too early for me, and by the afternoon I was barely functioning, despite any attempts to stay awake with coffee, food, sugar, walking outside first. This sleepiness felt like I had actually taken a sleeping pill and I could not fight it.

Last night, I went to bed at 11pm. I think I slept all night. My alarm woke me at 7am. I struggled to sit up. I put on a robe and made it downstairs. I don’t remember what to do yet. I go to my computer and check my calendar. It says make pork chops for dinner, but I don’t need to start that yet. It says I have a meeting at 1pm. Why am I up now? “Mommmmmm! Are you gonna make us breakfast or what?” My daughter comes to my rescue again. Mornings are easy for her, and she keeps me on track. “Mom, I need my allergy pill. Mom, did you pack us lunch?” All her little reminders can be irritating at times, but she knows I need help, and I don’t hide it any more. I can’t really, not from a 9 year old.

So the kids are on the bus, and I go back to my computer. Now what? I see my list of projects, but can’t remember or think through my fog to know how to do any of it. I make some green tea. I fall asleep before I finish it. I wake up with my preschooler asking if it is time for school yet? I have slept through it before, poor kid, and he knows to ask me. No, it is 11am, we have an hour. Phew. So I make some coffee, stretch, do some jumping jacks, wash my face with cold water and get ready to drive safely. Deliver him to school on time, go back home to my computer, and see that meeting is coming up soon. I’m not running it, just listening today, so no one should notice my fog. And we don’t use webcams, Thankfully, so no one sees me closing my eyes. I love working from home.

Now I start to wonder, did I eat breakfast? I look around for any signs. I don’t feel hungry, just sleepy. Ahh, yes, there is my oatmeal bowl. Should I have lunch anyway since it is almost 1pm? I have a slice of cheese and some red peppers dipped in ranch. I’m still so sleepy. Should I have more coffee? Or did I just have some, I can’t remember – everything is fuzzy. What should I do? I need to work today, but I don’t want to mess up tonight’s sleep with too much caffeine. And the coffee might not even help.

So why am I so sleepy today, after 8 hours in bed, then 3 more hours on the couch? Why? Why will I wake up at 6pm, work feverishly to catch up on my day work, and struggle to fall asleep tonight? Why does the Sandman mess with me so much?

I did have a terrible night of no sleep, 2 nights ago. I had a pain attack. I’m actually worried it was triggered by my reduction in alcohol. The pain and sleepiness started about 6pm, in my back and legs. I forced myself to stay awake until nearly 8pm. My legs were twitching like wild, and each twitch sent a painful zap from my spine to my toes. Then muscle spasms, more twitching, roll over, try to get comfy again, more twitches and zaps, roll over again, etc all night long. I try ice on my lower back, where the spinal cord injury is. I try stretching. I try motrin. I try a warm bath. I try sleeping through it.

So is today’s sleepiness still a recovery from a bad night a few nights ago? Was I using alcohol to settle these overactive spinal nerves? I definitely had a maintenance level of 2-3 whiskey drinks daily. Whiskey actually has anti-inflammatory properties. I don’t think I was drinking enough to depress my central nervous system? Interesting though. And sooo much conflicting advice out there. I think we have to figure out our own bodies and survive our daily battles in the way that works for each of us.


Our Brains on Pain


Brain Pain (Photo credit: Brandon Koger)

Read an article about brains on pain. Here is an excerpt, and the link is below.

Anyone living with chronic pain knows that it amounts to much more than an unpleasant bodily sensation. Fuzzy thinking, faulty memory, anxiety and depression often accompany long-term pain, suggesting that the condition is more of a whole-brain disorder than simply pain signaling gone haywire. New research from Northwestern University reveals a possible cause: an impaired hippocampus, a region critical for learning, memory and emotional processing.


I’ve read some research before, and know so many people that seem to have mental symptoms caused by chronic physical pain. I am excited that they have found a “real” cause for those fuzzy, foggy, impaired thinking symptoms we have, and that it isn’t “just in our head”. It really is in our head, and brain scans can see it.

I’m thinking chronic stress and trauma have a similar effect, actually impairing our brains. And then I was thinking, wow, is it like our muscles full of lactic acid, that is released through massage? So when we go to therapy, or process old painful memories, we are having a brain massage? Makes sense to me. I have often wanted to dig my fingers right into my painful brain to release all that pressure. I have also cried after a great body massage, with that release of tension and toxicity, so it makes sense we need to cry after an hour of therapy too.

So the next step? Is there some way to protect our brains from the constant toxic assault of pain and stress chemicals? I hope so.

But until then, I’m off to do the next best thing. I’m seeing my therapist today for a full brain massage. Gonna be interesting, as I intend to discuss with her all the ways I have been sabotaging therapy. We’ll see what she says about that, and where to go from here.