You say YES, your body says NO

I decided to with my new Arthritis medication working fairly well, I would try to reclaim some of my “missing life.”  We all have parts of our lives missing.  Things we can’t do, that we used to be able to do.  I’m not talking about playing the violin, unless of course you were a violinist before your arthritis struck, but those things we used to commit to do without even thinking.

I used to give talks.  Talks on education.  Talks on art history.  Talks on teaching art, viewing art, buying art, valuing art….

I also gave talks on skeptic education, such as Bigfoot, UFOs, alien abduction and had a specialty in New England paranormal history.

When I was asked to give a talk before I was always honored and happy to say a resounding YES.  YES, I would love to travel to where ever to share what I know.  YES, I love putting together a fun power point.  YES, I love answering questions, and I’ll gladly show and even contribute snacks.

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I can talk about animals with Bigfeet

The only thing I needed to check was my calendar.  I would travel all the way to TAM at Las Vegas, or drive 6 hours to my favorite talking venue at the Central NY Skeptics in Syracuse.  If the calendar was clear, I was ready to go.

I haven’t given a talk for over 3 years.  That’s because what was “No problem” became “Big problem”.  I was mortified when I had to cancel a talk at CNY skeptics just days before I was to speak as I needed surgery on an artery in my head.  This was the beginning or a long period of diagnostic testing to discover I was suffering from two types of Arthritis.  There is nothing worse than letting down your favorite group, and to do so at the last minute was especially distressful.

I’ve had to confine my skeptic education to blogging.  It was only recently that I decided I try speaking in public again.  I’m on a new medication that is in a testing phase.  My response has been good.  Not “I’m cured”.  But certainly helpful enough that I have gained back some of my courage.  I could perhaps, do a talk.

I looked at the local library and saw they were offering something called “Out of the Ordinary” brown bad lunch talks.  Among the speakers were the local so called psychic, the local ghost hunting group, and a UFO “expert”.  I noticed there were two dates on the library calendar that said “Come hear our mystery guest”.  As an experienced speaker I know that means “we don’t have a speaker for these dates.”

As a skeptic, I knew if I could get a gig as one of the “Mystery speakers” it would be an invaluable opportunity to teach an audience ,expecting woo and the paranormal, about skepticism.  The skeptic educator in me had to ask “Are you up to this challenge?”

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Nothing is more wonderful than a great audience!

I had to think about the changes on this new medication. Did this medication give me the freedom to commit to something, for just an hour, or would I risk letting the library down if I were ill?

My old medication gave me the feeling I had become someone that just basically had turned from a human being into an illness.

The illnesses ruled my life.  I could plan nothing.  My bed was the only thing in my life that was consistent.

This is one reason I volunteered to try a new off use medication.  My doctor asked me as he could tell the methotextrate was making me depressed. The other Rheumatologist at the practice is a firm believer in Methotextrate.  He refuses to try anything new, because he contends “We know the history of Methotextrate.  We know all the side effects.  We know that it helps patients.  I won’t take a chance with my patients as guinea pigs.”

My Rheumatologist is young.  He’s the newbie.  He graduated from the school on a tropical island.  He treats not just my illnesses he treats my whole body.  Including my mind, which was in a critical state.  I volunteered for the new medication because I have adult children, no financial need to support anyone, and I was desperate for that one thing that keeps all of us going… HOPE.

The new medication gave me enough energy to commit to ONE THING each day.  Nothing big and timing was important.  But it did open up life for me again.  I wasn’t just my illness.  I can now get a haircut.  I can commit to a time and appointment and get a haircut.  That’s huge.  I can go shopping for about an hour.  Give me a cart to lean on and I might make more than one store.

So I committed to the talk.

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always ask for a stool

I had a wonderful time at the talk.  I hope the audience enjoyed it and learned a few new things.  I was in a bit of pain as I had to stand for the entire talk.  That’s because a podcaster was recording the talk.

I made my first mistake.

While I can commit to something, I can’t do something like I used to.  Standing for an hour was very painful.  I thought too late to ask for a stool.  I needed to be near the microphone, so my plan of just sitting was OUT.  Also, it is important to be seen when you are speaking. So asking for a stool is on my list of things for any future talks.

Then afterward I agreed to do an interview with the podcaster. That was fine, especially as I had a friend help me with the interview. He knew a lot of answers I did not know.  But, that was a second hour.  Finally I hung out with my friend a bit.  No problem but I was fading quickly.  The standing for an hour had taken a toll on my joints.  Flaring was happening.

The next day, I wasn’t able to do anything.   Well, I did do a lot, I was icing joints and feeling sad that my foray into the “real world” was a failure. It wasn’t, but I missed an important appointment because I was in too much pain to keep it.

If I had used a stool, if I had limited my time after the talk, and if I had expected that naturally there is always a price to be paid for any activity, I would not have felt so upset with myself.  The point is I can still do a lot of things I used to do, but I need to do them differently.

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Next day rest day… and how!

I also need to know, I’ll need a day of rest afterward.  It’s not making the entire Universe, but my body demanded a day of total rest after my exertions.  No amount of “will power” could overcome the pain and exhaustion.

So, can we do things we like to do? Of course.  Will we pay a price? You bet we will.  Does it mean we give up and never take a chance and just stick to our schedule of  “what works” and causes us the least pain in our lives?  That’s up to each person.

I wasn’t ready to commit to another talk until I had fully recovered and thought for a bit.  Was the pain, the entire day after “wasted”, worth the feeling of being productive and educating others?  Maybe not the day after, but the week after I truly felt it had been worth the pain.

In other words, I’m open to speaking engagements again.

 

 

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Flying Lessons

We all find inspirations that help us make it through our chronic illnesses.

Sometimes that inspiration can be another person suffering through their own chronic illness.

First off, let’s admit the “Someone else has it far worse off than you do.” comment never makes anyone feel better.

In fact what happens is just the opposite.  You feel GUILT.

Let’s not even bother taking a poll here to agree, we real dislike the “I am always cheerful and happy” bloggers and you tubers out there with chronic illnesses.  Don’t even get us started on the “I gave up gluten and now I’m FINE.” people.

We all find people to inspire us and that we come to admire for having ,what my grandmother called, “Grace under pressure.”  They are real people, dealing with illness everyday, and they help inspire us to “keep going.”  They cry. They are afraid. They pick themselves up one more time than they fall down.  They find joy in today, as there might not be a tomorrow.

One of my biggest inspirations is a You Tube family know as “The Frey Life.”

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Peter, Ollie and Mary

Yes, they are religious, but I would never put anyone down for using religion to help them through a terrible illness. Many of my readers I know are Atheists, but also sometimes forget, many of us use our faith to help us through tough times. Faith is something that does help me along my chronic illness journey.

The thing I admire about the Frey family (husband Peter, wife Mary and service dog Ollie), is that while they have FAITH, they also believe in modern medicine.  They don’t expect God to cure Mary of her Cystic Fibrosis.  They don’t even expect modern medicine to cure it.  But, they are at best, hoping that Mary will live for as long as possible (I hope she does too).  They educate and inform the rest of us about life with CF.

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The good news is this is no longer “A Children’s Disease”. Many patients live well into adulthood.  What we need is a cure.

It’s a tough life.  Mary devotes over 2 hours a day to self care.  She wants to keep her lungs healthy for as long as possible.  Despite the incredible medical advances, including lung transplants, most CF patients do not make it to age 40.  That’s the top end of what she is looking at.  It should be noted, I learned that a lung transplant does not cure CF.  It’s more than just lungs, and for anyone interested Mary and Peter have some great educational videos on their you tube site.

So, what do I learn from the Frey Life?  I learn things like “Don’t Forget to Laugh Everyday.” (seriously, go check out their online shop.  They do all the work themselves.)

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For today’s laugh, mom my and little brother bothering our poor cat Crystal.

Yep that’s a rule.  My worst days, when I am in bed, depressed, despondent and in severe pain….surrounded by ice packed joints and having come back from getting the dreaded steroid shot…I make a point of going on You Tube to find a funny cat video to laugh at.  Everyday.  Laugh.  They remind their viewers to do this, and it is pretty darn good advice.

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….and then a helicopter landed.

However, one of the best lessons I learned from Mary was from a recent video.  CF patients go to the hospital a lot, and Mary was again in the hospital.  Peter is out walking Ollie her service dog, and Mary was alone.

Mary was sad.  Her port, which allows the hospital to deliver medication easily, was hurting her.  It was scary.  Replacing the port is an operation, and you could watch Mary’s fears and thoughts overtaking her ability to deal with the reality of life with CF.

We all have been in this spot.  The “I am tired of being ill and constantly having to worry about what’s going to be needed next.”  The endless visits to physicians,  hospital stays, the medication juggling, and the plain old fear.  Mary cried.

Then at that moment, she looked out the window of her hospital room and saw a life flight helicopter landing.  She turned to the camera, her tears stopped, and said “Today is the worst day of someone’s life.”  The timing was sadly perfect.

In that moment, she remembered, life is very hard for all of us.  That while she was afraid of her potential port surgery, and I think also just overwhelmed by her situation, she took a moment to reflect, “It’s not just me.”  Someone was right there having the “worst day of their life.”

One great thing about this blog is that it reminds me, we are not alone.

Everyone is struggling.

Our condition is not just tough on us, it’s tough on our families and friends.  But, we always have to remember, life is tough.  There is no real “normal”.  The older I get the more I learn, everyone has something in their life they are dealing with.  In fact, if you only have ONE THING that you are dealing with, that’s an exceptionally lucky life.

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It’s not just the lungs, something I learned….

Mary is a happy person.  She has a fabulous support system with Peter and Ollie.  She has a CF support team that seems considerate and on top of things.  She also has chosen to share her CF life with others, so that she can help educate us about CF.  But perhaps what she didn’t intend was showing us her own education.

Listening to Mary and Peter, you see their growth.  They will sometimes say “We didn’t know this.”

You see a very young couple dealing with a very serious disease.  They are learning together.  I know my husband and I work as a team, sometimes poorly it should be noted, to deal with the pressures that come not only from my own illness but that of our disabled daughter.  It’s better with a family, but in some ways is also harder.  Communication is the key.  What can I do to help you?  What is “too much” and what is “too little”?  How much can I handle and when do I need to admit I can’t handle things?

By watching the Frey family, I learn what they learn.

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Breathing is a blessing.

But the lesson of the helicopter (as I call it) has been one of the best lessons yet.

When I am in the depth of despair, I have to remember “Someone is having the worst day of their life.”

It doesn’t make my day better, but in a way, it reminds us that everyone else isn’t walking around having these amazingly normal lives.  Also, at any moment, anyone’s life can change.  It can be for the better or for the worse.  But there is only one thing in life that is certain, uncertainty.

Also, the helicopter lesson reminded me how wonderful we are as a species.

We spend huge amounts of money to help take care of each other.  This doesn’t make sense from an economic standpoint.  One could say that the hospital makes money and the helicopter pilot makes money, and certainly the drug companies make money.  But, the effort we have chosen as a society to help those needing care stay alive comforting to me.

I thought, watching the helicopter land “These people, flying that helicopter,  caring for the patient, everyone at the hospital, the nurses, the doctors, the technicians, everyone chose to go into health care.”  These people were inspired, most not by money, to study and educate themselves in a profession where they help others.  My GP doctor jokes “Every doctor has a batting average of zero.”  Medical care is not always the most uplifting of professions.  People suffer, they are in pain, they die.  People still chose to do this for a profession.

 

Mary does her hard work, the PT and the vibrating vest and the medications are a full time job.  Peter does his part, supporting her but also letting her cough and not asking “are you OK?”.  He is wonderful as he carries on as if “this is normal”. It is normal life for them.  Mary’s never made to feel like a “sick person”.  Instead she is a “person with CF.”

I love how Peter often just gives a shrug and says “This is life with CF.”

It’s not “This is life with someone that is really sick, and things are not normal at all, it’s just SO DIFFERENT.”  No, he’s just “This is LIFE.”

One criticism is that Peter seems to ignore Mary when she is having a coughing fit.  He is not ignoring her.  That’s just “life with CF.” He will sometimes pat her shoulder, but mainly he is there. He never treats her like she is a SICK PERSON.  That’s one good lesson for anyone caregiving for someone with a chronic illness.  Don’t act like life is “not normal”.  This is normal for someone with a chronic illness.  No one wants to feel like a patient all the time.

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Always take a moment to look UP.  It’s a wonderful sky out there.

So, yes they are showing mainly the upbeat times.  But since the videos are daily, you get a real picture of life with CF.  Warts and all.  Plus, you admire how a young couple, obviously without much money, works hard to make do with less.  They find such happiness in sunsets, that I started keeping my eye out for “beautiful skies.”  I now take a moment to look at the sky.  It’s just a moment, but it’s a moment of happiness I did not have before.

Thank you Mary, Peter and Ollie.

 

The Impossible Clean

by Kitt Bradley
My powder room is the cleanest it has been in years. I wish I could credit this to a sudden burst of desire for cleanliness, but no. It’s from a more mundane reason: I ate too much fat in one day.
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For most people that’s just bad for your waistline, but since I no longer have a gallbladder, this led to “gastric dumping.” Gastric dumping means that the contents of your GI tract does a double-time march out the back door, so to speak. As it happens, I had not previously had an output on this fine spring day. So gastric dumping led to a full bowl of the ghosts of meals past. Further, because of the emergency evacuation, some of it was, er, under-processed. Fibrous material that is normally softened by the last few hours of passage had taken the express train to Buttville. This meant that when I flushed…It didn’t go down the drain. In fact, it clogged the hole.
Completely.
Now, I am an adult. I know what the rubber plunger is for. And because American toilets work on a water-in, waste-products-out basis, said plunger is always conveniently next to the commode. Just in case. So I grabbed it and plunged away. Usually, that leads to a gurgling noise and a rush of departing sewage. But this time, no dice. Just a swirl of defiant logs glimpsed through clouded water.

Of course by this time the fluid level is perilously high. So I hunted around for a bucket I didn’t value much, and a plastic cup I could throw out afterward. Both were fairly nearby, since my powder room is on the same floor as the garage (pail) and the kitchen (novelty plastic cup from some sports event). I carefully bailed out some of the noxious fluid –a gallon’s worth at least — to make room for waves from renewed plunger action. I plunged three or four more times, and flushed. I had never encountered an output that resisted the second round of plunging until that fateful moment.

Due to my lack of prior experience with multi-plunge-resistant poop (MPRP), I had not stopped to think about what I’d learned in basic chemistry: “When a water-soluble substance is placed in an enclosed space with water and agitated briskly, the substance disperses more evenly into solution.”
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The labor of Hercules….
My unsuccessful plunges had thus converted the contents of the toilet bowl into something I now think of as Cream of Nightmare. The MPRP has been redistributed throughout the now opaque and considerably more viscous fluid still in the bowl. It has also had much more contact with the room air, resulting in a stench that reminded me forcefully of when we had diaper service for my youngest kid, and pickup day was delayed by bad weather.I rapidly assessed the situation: I have a bucket full of recently-bailed foulness; a bowl full of sheer horror; and a steadily increasing trickle down the pedestal onto the floor. My bathroom’s HARDWOOD floor.
I start throwing everything out of the bathroom door, frantically trying to beat the rising tide. Boredomassuaging magazine rack gone! Cleaning supplies out! Cute little threeniche stand with baskets foTP and such my powder room came with a pedestal sink, no vanity — it transpires I can pick that up. In an emergency, I can even run while carrying it!
I scream for my daughter to bring me some paper towels, and grab the bag out of the newly relocated trash can to put the used ones into. I used literally an entire roll of paper towels on the immediate emergency blotting. At last, there is no more continued seepage, and I cautiously bail a few more cups of nastiness into the pail to be sure. I carry the bucket of soupy disgust upstairs carefully, and slowly, attentively, pour it down the kids’ bathroom toilet. In two batches, with a successful flush each time. Okay, I can clean that in a few minutes,after dealing with the crisis downstairs.
At this auspicious time, my husband got home from work. I yell to be heard over the noise of the fan: “I’ve clogged the toilet and it won’t plunge, do we have a snake?” I hope we have one of these rarely used but sometimes essential plumbing tools out in the garage somewhere. But my husband is a man. And Real Men don’t need a snake: Real Men can clear toilets with a plunger. So he comes in and gives a few vigorous manly pumps. The MPRP remains unimpressed. This did not discourage him, though. He just tried again and really put his back into it. There was a sound like a pregnant hippo falling into a vat of fresh-mixed adobe, a surge of displaced fluid, and then: Victory! Water is flowing out again! The Cream of Nightmare makes its turgid, noisome way down through the trap and into the city sewers, which presumably have dealt with worse
There was also a generous spattering of backsplash from plunging on the toilet; on the sink; on the walls; and on yet more of my hardwood floor. (Have I mentioned that this is a white bathroom? Or it was,anyway.) I cautiously did a clean-water flush to verify that the clog was in fact cleared, then ran upstairs. I stripped off my soiled clothing — which I threw into the laundry room for priority processing– and changed into some old jeans and a t-shirt that I hate. I had kept it with the intent of sacrificing it to some messy chore, and whatever would decontaminate that bathroom was bound to involve some clothing-hostile chemicals.
I put in a few minutes on the Internet. Did you know that there is NOTHING you can do to a hardwood floor to sterile clean it that doesn’t harm the finish? Nothing! Not unless you had the foresight to get the special, we-can-be-used-in-hospital flooring that the builder had somehow not included. I considered my options briefly, then thought, Screw it, if I am going to ruin the floor anyway, might as well be sure it’s clean. So I rinsed out the sacrificial bucket from the initial bailing and filled it with bleach water. I got out a brand new sponge (with a scrubber side and a soft side), put on my rubber gloves, and moved into the scene of disaster.
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Of course, I’ve had the fan running since I was in production mode some while earlier, but the scent of splattered Cream of Nightmare is indescribable. My daughter had tried spraying some Ozium, which is a very effective scent-neutralizer—it used to be sold in head shops for concealing the smell of various kinds of smoke from concerned parents and/or law enforcement. It was reportedly quite effective at this. Faced with the olfactory remnants of MPRP, however, Ozium tore off its badge and went looking for new work. It would have been kinder to the rest of the family to close the bathroom door, but that probably would have been fatal to me. At least with the fan running and a good flow of fresh air, I could process oxygen.
Fortuitously, by the time I was halfway down from as high as I can reach to the floor on the first wall, could no longer smell anything. Whichever aroma sensors the stench hadn’t killed off, the bleach fumes nailed. I have never been happier to have a primary sense fail me,washed all the walls to at least six feet, working (of course) from top to bottom. I washed the pedestal sink, the towel bar, the inside of the bathroom door, the toilet paper holder, and the toilet tank. I literally scrubbed every square inch of that floor with bleach water, carefully wiping the water up immediately with the sponge and drying it with paper towel (from yet another roll). Last but hardly least, I scrubbed the toilet bowl and flushed the bleach water down. I’m pretty sure you could perform surgery in that room now.
I also discovered a bonus added task. You see, our cat box is in the hallway to the powder room, and the door between them is usually left open. So when I converted the walls from impromptu leopard print back to the original white, I also removed, oh, 13 ounces of cat litter dust from the walls. This means that the hallway will also need a round of wall-sponging. But I think I’m going to wait until my nose is working again to do it.
**  A special thank you to Kitt, for sharing this experience many of us with chronic illnesses can relate to, gall bladder loss means having to be careful what you eat!  For others of us it can be the metformin medicine GI clean out.  Others have equally miserable side effects from either medications or surgical changes in their lives.  Thank you for the laughter!

Prince didn’t die from Opiate Use

Many of us suffering from chronic illnesses are heartbroken over the death of Prince.  Most of us are fans of his music, others also love his ascetic and the mystic of the man that choose to live in Minnesota, not Hollywood.

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But most of us are heartbroken as we depend on opiates to help us stay pain free.  Because we know Prince didn’t die of opiate use, he died from breaking the law.  He died from opiate mis use, which is a crime.

The criminals are keeping so many of us from being able to easily get a drug that we have used safely for years.  In my case, I’ve had almost 10 years of opiate use to get me through pain that otherwise would keep me bed bound.  Others that take opiates are in end stage cancer, and it is the only thing that works, allowing them more time to enjoy their families and even travel a bit and do those things they love so much.

587c5f9cc5924bcad26cb13014ddd970People with severe arthritis and chronic illnesses in the past were confined to lives of horrific pain.  The drugs used to treat in the past, were often also opiates.  An older doctor friend said that “They worked well, before morphine and other pain killers, those wounded on the battlefield were doomed to  often die of shock from their injuries before we could get them to a hospital.”  Opiates help countless others recover from surgeries, that before modern use of opiates would mean the surgery could be successful, but the pain control not, and shock would set in.

 

When I had a severe case of diverticulitis, the pain was so horrible that in the hospital I cried in pain for two days, unable to even watch TV or read a book.  The staff assured me I was getting as much pain killer as I could, and that soon the antibiotics would work.  This meant I could have the surgery that would save my life later when my intestines were not suffering from an extreme infection.  While I was in pain, I was also comforted knowing that I was undergoing a very dangerous surgery under much more safer circumstances without the infection.  The only thing allowing the delay were the extreme pain medications.

So, what about those of us that take opiates?

Well today opiate use is under attack by law enforcement and various states.  They see this as an epidemic.  They also blame doctors.  They are “overwhelmed”, or should I say understaffed and undertrained.  The same police that shoot someone as an over reaction to their fears of being hurt, are the same people claiming the only cure for this epidemic is strict enforcement of laws designed to make it harder to get these drugs.

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the expression of pain is one many of us would have to live with, as  long as we could “take it” without good pain killers.  All of which have dangers and side effects.  The choice though is clear for those in chronic pain.  Those that abuse should not punish those that use these drugs properly, nor the doctors that know how to prescribe them safely.  

 

Sadly the only people being punished are those that really need these drugs to function. One friend told me that she saw her grandmother only in bed, since her arthritis had no good treatment.  Eventually she said her grandmother simply stopped eating, a slow and miserable form of suicide.  No one in the family encouraged her to eat, as they knew her level of pain was horrific.  There were no “home remedies”, those snake oil medicines that were mostly cocaine or morphine, there were just doctors that knew some forms of arthritis were a curse, as feared in those days as getting cancer.

So, how are opiates different today?

Well for one thing doctors, not the police, have taken great steps in solving this opiate crisis.  My opiates come in a safe long release form.  That means, I can’t get a punch from it.  Over 12 hours it is slowly released into my system.  I feel the pain ease away, and it takes about 20-30 minutes before I can even walk in the mornings.  I keep the medications by my bed, ready to be taken.  What happens if I take two? I would suppose I get a bit more of a buzz, but it’s still super low release.

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My grandmother trained as a nurse in the 1920’s, she saw the major developments of antibiotics and also safer pain medications during her career. Also the study of addiction started, and the need for carefully following a patient on an opiate (or any medication) was well known to her. Her first jobs were during prohibition as a private nurse helping alcoholics that were using  very unsafe substitutes for formerly legal liquors.

Still, what if someone steals my tablets?  They will be very unhappy as they won’t get much of a punch.  In fact the slow release has little chance of addition.  Also crushing the tablets to snort (which is a favorite method for a quick high) won’t work with these pills.  There is an additive that means if crushed, cut or broken, the opiate won’t work at all.  These new pills, developed to help those with a long term pain need not become addicts, is never mentioned by the media.

My own doctors are appalled at the law enforcement/political plans to deal with this “crisis”.  They feel left out of the process.  As it is, laws have been passed that I can only refill my prescription on the day it runs out.  I have to be out of drugs before I can refill.  This often means if there is a snow storm or some other reason I can’t get out, I can’t get my drugs.  This also means I can’t drop one or lose one.  I dropped one the other day, and ended up having a friend over to tear apart the room with me (I can’t bend over well) to find it, where it was found having rolled under the bed and into a dust bunny.  My friend was “throw this out, it’s all dirty.” I was “I have to take it.”

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Let’s make this as hard as possible…..not for the criminals of course, for the people not breaking any laws.

 

Next up are the laws that say you have to have a paper prescription.  So you time everything correctly.  Each month I have to go get a paper copy of the prescription from my physician who has never had one problem with her patients and opiates.  None.  But this applies to all doctors.  Instead of going after the criminal doctors, and they are out there selling everything, not just opiates, the police have decided all doctors are guilty.  So, often I am driving, or most often someone that can still drive well, to pick up the paper prescription.

A horrible situation arose when I had my prescription ready to go on a Friday, and found my physician had forgotten to sign it.  It didn’t matter that for years I have gone to this same pharmacy and filled this same prescription, I had to have a real signature.  The doctor had simply forgotten.  Her office was closing in 15 minutes.  I could not physically drive there and back (her office is about 30 minutes away).  She was leaving for the weekend to see her child at college.  A fax was no good.  This had to be a physical signature.

Finally, after much calling and “I know this law is so stupid”, the head pharmacist and

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… adding hoops to jump through won’t make the problem of drug addiction go away.

someone at the company that owns the pharmacy, took pity on me.  They knew me, by first name, they knew this doctor had NO issues or problems.  She promised to send one over via mail overnight, but for that night, I could have one pill.  One pill.  Everyone involved knew this was ridiculous, but they didn’t want me to have to spend the night in pain or as would probably happen, having to check into the hospital.

Massachusetts tried to pass a law where anyone on opiates had to go to the pharmacy every 3 days for a refill.  Now when I put in my prescription, I have to show ID.  I have shown ID being driven by my husband or a family member, while in my pajamas and robe and surrounded by pillows, because if I am flaring, I should be in bed,not in a car at the pharmacy drive through.

My own doctor was livid about this, wondering how end stage cancer patients would enjoy spending their little remaining time driving between their doctors office picking up a paper copy, and then sitting waiting for their pills at the pharmacy.  She said “Patients with real needs that had never abused their opiates would spend all their time going back and forth.”  You have to show up in person, no matter what your condition, but once a month I can do.  Every three days, that’s impossible.  But the police and law enforcement were all in favor of this.

That’s the problem, because Prince was given opiates for his hip problem.  But the opiates did not kill him.  He died as he had people that helped him abuse the drug.  If it weren’t opiates, it might have been something else.  People say “I was addicted.” No, as with many drugs, opiates are hard to get off of right away, and you ease off with the help of your physician when the time is right.  Just try not taking, cold turkey, almost any medication. It’s tough.  I know someone trying to get off of her Paxil as she read it can cause dementia later in life.  She tried to quit “cold turkey” and was a complete mess.  She had to be eased off of it, and another drug which she hopes is safer, introduced.

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We have things to do, that do not include waiting around the pharmacy

What killed Prince were his friends and others that got him those opiates.  Perhaps he had his staff claim they were in pain and needed short term opiates.  These will give you quite the buzz.  Money can buy a lot of things. Including doctors that will sell you about anything, including Ritalin to snort.  No one is saying “let’s stop using Ritalin.”  Paxil does indeed seem to cause an increase in your risk of dementia, as does Tylenol.  No one is calling for those to be more regulated.  Indeed, one of the most dangerous overdoses anyone can take is half a bottle of Tylenol.  There isn’t much that can be done for the liver damage and people that were more into scaring their family with taking an over the counter medication find themselves dead.  Mix in some alcohol and you are in for real trouble.

Yes there is an opiate crisis.  I know this as I have a handicap tag, not a license plate.  Why?  Because if you have the license plate, people will break into your home knowing you have a likelihood of having MANY drugs (not just opiates) they can sell.  Also I was asked to always use the drive through at the pharmacy.  That is because an elderly couple that got their medications locally (at the pharmacy I use) were followed by someone as they left and robbed at the post office in small Spofford Village.  Yes crime is around prescription drugs.

But there is also crime around heroin, marijuana, cocaine and other drugs.

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There will always be another drug, prohibition doesn’t work

There are also cheaper drugs just waiting to fill the void in the United States.  Currently Thailand has a inexpensive pill that helps workers put in long days.  It’s a necessity for many to make a living.  Ya Ba is sold for about $3-4 a pill.  It’s a super cheap high, first popularized by long distance truckers.  It’s spreading throughout Asia, as it’s a way to keep going even when you are exhausted.  It also is a way to party and have a social life after a long day of work.  Once this pill invades the US, it will make opiates look like a joke.

The problem isn’t that doctors are prescribing this, it’s that many people do have an addictive personality and also have the money and means to get more of this drug.  When they are taken off the medication, not slowly and carefully, they often turn to heroin on the street as it’s the closest they can get. It should be noted prescription opiates are not heroin.  Also stolen opiates are often crushed and injected, they are not at all what the person legally taking these drugs is experiencing.  If anything, doctors need to know their patients, and also make sure that there is proper care with withdraw from the drug.

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Even Sherlock Holmes used it, but Doctor Watson wasn’t overly concerned in the Conan Doyle stories. It was more like “you are drinking a bit too much old boy.” Today’s physician is more careful and involved with long term opiate patients.

When celebrities like Jamie Lee Curtis claim they were “addicted” to opiates after a surgery, what they mean is “I had a really hard time getting off of it, as I possibly would with any medication that is very strong.”  She was not on the streets seeking a high from heroin.  Anyone that has suffered from Depression, as many with chronic illnesses have, knows that the switching of medications to determine the correct medication for treatment can be torturous.  It’s not just opiates that are difficult to do without.

But, politicians and law enforcement, they see all use of opiates as dangerous.  The punishment falls on those least able to follow these new restrictions and rules.  They don’t consult with physicians and surgeons and hospitals about all the good these medications do for so many, who do not abuse the drug.  There are no good alternatives for many of these medications.  Punishing the patient is not the answer.  Punishing the physician who has to tell the patient, “I have to use this other painkiller that does cause terrible stomach pain, I’m sorry.”  What they will do with patients after surgery is not known.

It’s easier for someone to buy and abuse liquor, and indeed we rarely read about the epidemic of alcoholism, than to get opiates.  If you are Prince and you have friends and money, you can get this drug.  But the drug itself did not kill him.  His dependence and unwillingness to find treatment, did.  It could have been alcohol.  It could have been cocaine.  It could have been Ya Ba.  As long as there are substances that can alter our physical state, they will be used for both good and bad.

Prohibition did not work.  States are figuring out that decriminalizing marijuana is a good idea.  Even making it legal seems to be working well for Colorado.  California has it so you can sneeze and get the medical use license.

Opiates are the drug du jour.  They do a lot of good, and yes have cause a lot of harm for some that have abused them.  Overall, imagine war without opiates, hospitals without an opiate choice for those in severe pain, and opiates off the list for people at the end stage of their illness.  Pass laws and more restrictions and those that still want it will find it.  Those that legally use it and need it, will just suffer in pain with inferior medications, or end up trapped in bed and suicides will jump.

If physicians and doctor, those ones that deal with patients everyday, were included in this

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I know more than you doctor! Why would I ask their opinion on this? Solve a problem by shooting it or banning it!

“war on opiates” lawmakers and law enforcement might learn there is a lot that the medical community has already done to make opiates safer.  Long term slow release is a comfort to me, knowing I can get the medication I need and have small chance of addition.  While getting off these medications may be part of my future if a better treatment is found for my condition, and much surgery done to correct the damage already done, I may be off these drugs.  I would like nothing more than to be able to live drug free.  But that is not a reality for many of us.

The thought that politicians and not physicians, will be the ones deciding if I live a life of pain, or one of controlled comfort, is one that terrifies me.

 

 

Doing Time in The Hole

Doing Time in The Hole

By Katrina Branch

Misbehaving in prison is a bad idea. The powers-that-be do not approve of bad behavior, and they have some unpleasant tools to discipline those who break the rules. Solitary confinement is the current punishment—along with extending the time to be served before the possibility of parole, but in the bad old days, they had The Hole.
The Hole was solitary with some other sadistic touches thrown in. It was usually kept dark, and sometimes sound-proofed so that even the noise of the other prisoners was muffled. Unheated and damp cells were often used, along with nothing to sleep on, and a bucket and/or a hole in the floor for a latrine. At Alcatraz, the prisoner’s food wastossed into a blender and reduced to a sort of wretched smoothie with some beet juicethrown in, so that whatever flavor there might have been, became beet. Food was passed in through a slot, so that even that necessary moment of interaction was deprived of all humanity. Guys often came out of the Hole not quite right in the head.

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Nowadays, such practices are forbidden as being inhuman and torturous. But the Hole still exists—in the heads of people with depression.
It’s hard to explain to a person who has had the good fortune to never have experienced such a thing. But if you know someone with depression, odds are good that they know about the Hole and that they’ve done time there. The Hole is the place where hope and light and the view of tomorrow have all vanished. There’s just an endless gray expanse of I’m Screwed as far as your brain can see.
In the Hole, we lose the ability to remember what life was like before it. We lose the ability to project life after it. We can’t imagine that there is a way out of it. Life will just continue being a struggle—fighting to remember things, fighting to find the energy to eat (food tastes bad) or to walk (the Hole includes a level of fatigue comparable to having just completed a week of the flu). Interacting with other humans feels too difficult to contemplate—and even if that weren’t the case, the conviction that no one would tolerate one’s worthless presence except as a strained courtesy is part of the package.
It is a fundamental sense of having lost one’s humanity, of being the shivering dog in the ASPCA ads, alone and unwanted and covered in fleas. The Hole is why depressed people sometimes commit suicide.
This is why anti-depressants are life-savers: They put a floor in the Hole. As one sinks into the sense of detachment and enveloping shame—or worse, into the bog of numbness—there is a sudden stop. The sides of the Hole no longer rise so high you can’t see out; with luck—and the right dose of the right meds—you can even see that you could climb out, if you can find the energy. The sense that it will not always be like this is achievable, if not always automatic. Sometimes you can even conjure up a happy memory and think, “Life has not always been like this.”
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Depression, medication helps.
If your brain is normal, you could take anti-depressants for a month and they wouldn’t give you a high. (You would have trouble sleeping and break a horrible sweat, and much worse is possible, so please don’t try it.) They aren’t the ‘pep pills’ that were used back in the 60’s to try to banish depression. They just keep your serotonin (and in some cases, norepinephrine) levels from crashing below the threshold of functionality. They don’t put you back in the normal world—but they do add a lightbulb and a window looking outside. This is literally life-changing for a person with depression. It’s no longer the Hole, just solitary confinement until we find our feet again.
I have extra experience with the loss of perspective due to brain irregularities, and this is because I suffer from migraine. Migraine is caused by abnormal electrical activity in the
brain—one book I read described it as a wave of electrical potential sweeping out
like ripples from a stone tossed into a pond. It causes some of the semi-automatic functions of the brain to misfire. In particular, it messes with the limbic system which affects memory; social cognition; rage and passivity; and overall emotional function. In
other words, it literally scrambles the circuits that add emotional flavor to our memories and ideas of the future.
There is a moment in the depths of a migraine when one has a wave of panic: “It’s not getting better. It’s always going to hurt like this. I can’t take this much longer!” and it seems as though the pain has been going on for hours. (For me, this moment usually hits about half an hour or forty minutes into the headache—right before the meds kick in.) This overwhelming sense that migraine is not a passing event but is the new reality of life—that is the closest thing I know of to the Hole in any other realm. It’s a comparable level of not being able to access memories or project a future outside the present emotional context. It’s literally not possible with your brain in that state to have the usual processes occur.
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Feeling in “the hole” is common to many illnesses
I mention this for two reasons. First, because I had a friend suddenly understand what the depression Hole is like, because I drew this analogy and she has migraines. Second, because the lessons I learned from migraine turn out to be useful in dealing
with the Hole of depression.
1) Accept that it is happening. You can’t make a migraine—or depression) better by just telling yourself it’s not real. This is not a weakness of character: It’s a medical condition due to unusual brain activity.
2) Get to a safe place. You can’t make it go away by trying to act as though it isn’t there. You have to take care of yourself and not try to do anything except get home (or to another safe place) and ride it out.
3) You can shorten the course and severity by taking your medication—and if you don’t have any prescribed, by seeing a doctor as soon as you can get someone
to take you.
4) While you can’t make yourself not feel like your life is bad, you can remind yourself gently but repeatedly that this has happened before and it passed. Sometimes that feels like stating utter nonsense, but the act of focusing on the
words, “This is temporary and things will get better” can help you stay out of the whirlpool of panic or sorrow. (For depression, I say that out loud; for migraine, sound is painful so I just think the words over and over.)

5) Accept whatever help you can get. For migraine, that means having my kid or spouse bring me my cold flax bags, going in a dark room, and lying very still until the medication has done its thing. If I am away from home when the prodrome (pre-migraine weirdness) strikes, I need to call someone to drive me home. Being in control of an automobile is not safe when I’m in the throes of migraine; and sometimes, when I’m in the Hole.

 6) Have compassion for yourself. This is actually the hardest step to take, and one I am only now getting good at. If a friend was going through a migraine, or suffering from depression, I’d never expect them to be able to maintain a normal schedule! Try to grant yourself the same compassion you would show a friend. It’s not being ‘selfish,’ it’s being reasonable and fair. It’s okay to be fair with yourself, and it’s necessary to be reasonable if you want to accomplish anything lasting in life.
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It’s scary, but it passes.
  Some people have situational depression, that is, they are depressed because of something bad happening in their lives: the death of a loved one; the loss of a job; getting a bad diagnosis (or worse, having symptoms and tests and not getting a diagnosis, which is very scary). It’s a natural and common reaction to something shitty happening in life. Some people have affective depression, that is, their emotional mechanism (affect) is out of true due to neuro-transmitter imbalances in their brain.
Whichever is the cause, you can find yourself in The Hole. Sadly that’s how it is: You discover you are there. Like stepping on a rotted plank, you know after it happens that you’re no longer on the level but sunk in the mud. That’s okay, you know it now. Take a few deep breaths and then remember the six suggestions above. Accept it’s real; Get to a safe place; Medication; Remember it will pass; Accept help; Have compassion. In fact,if you have a friend or a loved one in trouble, you can help them with any or all of those steps—you can grant that help; you can provide transportation; you can reassure them that it will pass; you can get them their meds or support that trip to the doctor.
And please, share this article with them. It is great solace to learn that you’re not theonly one who has done time in The Hole, and a ray of hope to find that others have found their way out again. You’re not alone; this is not a dreadful fate meted out to you.
It’s a medical issue, and it needs to be treated as one. Nobody would tell someone with heart arrhythmia to “snap out of it.” You’d tell them—or yourself—to take your meds and take action, doing what is known to have helped before. And you would have compassion for their suffering..

The Joy of Surrender

A wonderful read after you have had a chronic illness (or illnesses) after one year is the book, “How to Live Well with Chronic Pain and Illness” by Toni Bernhard.

It’s a wonderful book to read after you have made it through that first hard year.

It is a dreadful book to read when you have first been diagnosed.

Because this book will help you learn to let go, and learn to love it.  It’s a handbook on the care and feeding of the new person you have become since your illness.

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So now WHAT?

The first year the book will do  you little good- as that first year is a time of adjustment.  It’s for when you bury the old you and mourn her. Then you figure out the person into which your body has been reborn.  We think of rebirth as something only religious people believe happens.  Few know that it can happen to anyone,while we are still alive, and can be almost as traumatic as a physical death in the family.  I think of it as suffering and surviving your own death.  

There are those of us who will live for the rest of our physical lives with the BEFORE and the AFTER.  It takes about a year before you stop looking BACK and begin to refocus on FORWARD.  What’s next?  No one is quite sure, not you, not your family, not your doctors and certainly not your friends, about just who you are now.

There is not set time for this rebirth adjustment, but my own general practitioner places it at about a year. She told me ,“I knew it would take you about a year before you began to ask me about living with this disease, instead of curing it.”  I had been adamant there had to be something MORE that could be done, and had we not better be doing it NOW?

Today I talk with my physician about managing the disease.  We work on what I can do to make things better. She consoles me when no matter how carefully I follow every instruction, I don’t feel any better.  This could be baseline.  It might not be, but it could very well be as good as it is going to get.  I definitely know that things will get worse.  After all, everyone ages, and despite our hopes of being that 100 year old still driving to the lake to go fishing, reality proved genetics trumps all.

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In other words, unless all four of your grandparents and your own parents, are in their senior years and doing just spiffy, odds are you won’t be doing spiffy either.  It’s only downhill from here for all of us.

Blaise Pascal writes of how we are all running toward a cliff and desperately distracting ourselves by looking side to side as we speed along.  He saw much wrong in this as he felt we should be more focused on the end of life, rather than forgetting about it. I see much good in distraction.  I have learned many ways of distracting myself from my pain and from what this illness has changed about my life.  Books are carefully chosen.  Old movies discovered and enjoyed.  Friendships fostered online.

The old life of travel, vacations and conferences is gone.  I can no longer just drop in on someone for a weekend and visit.  It’s not just the physical difficulty of flying, it is also the economic changes that come with a serious illness.  I am not able to afford airplane tickets and conference fees.  My husband travels less ,to be able to be home taking care of me, so the days of frequent flyer miles to burn are gone.

I did go on one very lovely trip to Las Vegas to a conference, but only with the most extreme planning and care.  I had my husband and brother to take care of me, and even so it was exceedingly painful to fly on the plane.  The worst position for my arthritis is straight up in a seat.  They say airline seats can recline but I don’t believe it.  At least not enough to ease my pain.  First class is nice, but once again, the cost is prohibitive.

I am adjusting ,with the help of the wonderful book mentioned above, to the new me.  The very zen like approach of the book is “Accept and don’t fight so hard.”  There are the fighters out there.  I admire them, constantly searching the internet for the next big cure.  I found it exhausting and also depressing.  While others may be “oh a cure is being tested and tried out!” I am “Should I live my life waiting for this trial to go from mice to humans?”  Should I base my life on a tomorrow where some trial in Sweden may prove beneficial, or should I acknowledge that these articles make me depressed?

hammock2Acceptance means figuring out just who I am now.  Do I like this lazy person?

After a year, I have begun to think I do like this new person. She’s very different from the person I was before the arthritis and other diseases began their onslaught, but she’s also not a bad person to get to know.  Accepting the person I am now is a big part of my recovery.  It helps me plan my new life, instead of waiting for my old life to return.

There is one problem though that the early chapters of “How to Live Well with Chronic Illness” warns the reader about, the warning is that your acceptance timeline may not be the same as that of your family and friends.

“When you are better”, is something I hear a lot.  “When you can travel again!” is another.  I get “When you are managing better” and “When they find the correct medication” or “When you work harder with your physical therapy…”  There are all these “WHEN” comments.

The book kindly points out that while you may be healing emotionally, and accepting the new life your illness demands, others need to accept the new you at their own pace.

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“Yes I am STILL in my pajamas”

Sadly, the author points out that there will be those you will never ever be able to convince that you are never going to be better.  I feel I am “better” but my definition of better has changed drastically.  I heard that someone has said about me “She seems to apathetic about her illness, if I had that I would be traveling to the best doctors and never satisfied until I was better!”

I admit my own mother is one of those people that fights her macular degeneration illness everyday.  She has travelled to see specialists. She is in a clinical trial. She says “I am in my 80’s and I don’t have time to wait.”  She is determined she will not go blind.  Fighting is her way of dealing with it and I’m proud of her for doing so.  That is her way.  But it is not my way, and I realize that some of my friends may be upset with what they see as my apathy.

Zen like acceptance has no place in the life of many Americans with the “we can fix it!” fighting spirit.  But, I spend enough energy and time fighting pain. I spend too much time fighting to feel I have a place still in the world.  My self esteem took a big hit, as much of a hit as my body has taken physically.  I don’t have a lot of spare time or energy these days, so I need to consider carefully how I spend what little time I have left.

I also have started to think “My life is not all about my illness.  While my job is taking care of myself, how many people are just defined by their job?” I’m ready to focus on something other than my illness all the time.

Some of my friends and family are coming around.  They are really cool with being more online ,than in person, friends.  We joke and laugh online.  Our conversations are not all about the illness, just like they aren’t all about their jobs to me.  They are taking the time to get to know the new me.

The author warns, “Some of your friends won’t like the new you.”  That’s fine.  The things that I had in common with them are gone.  That doesn’t mean that I am a bad person, it just means I have nothing to base our friendship on anymore.  If your best friend and you went on bicycle tours together, and all you talked about was bicycles, your friendship may be over.

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Looking out at the world….

It can be like a knife to your heart when you are invited to something, and you know the person is being kind and you want to say yes.  I joked to one supportive friend “Someone could say that the Beatles are reuniting, even the dead ones, and they are giving away free ponies after the show, and I still couldn’t go.”  I want to go.  I can’t.  Telling me about the Beatles concert I’m missing isn’t going to make me better, as wanting doesn’t cure what I have.

I want to recommend this book to everyone fighting any kind of long term illness.  But not the first year.  Because you have to go through the phase of fighting like a mad man where it consumes your life, before you finally decide that you want to start living and not fighting.  You have to get exhausted and then say “OK, so what CAN I do?”

It’s a true learning experience.  But my experience isn’t going to be the same pace as all my friends and family.  I have to give them time also,and realize some are never going to “get it”.  Those friends I have lost along the way aren’t bad people. They are very busy people with interests that now differ from my own.

Also, people that stay friends with you just because they feel pity for you are not doing you any favors. Pity is a horrible thing to express to someone with a chronic illness.  Pity is the worst thing you can ever express to another.  It takes away their sense of pride and self worth.  It saps their energy and pity cripples them far more than their disease ever could.  

Only once you throw out the pity, the false hope, and the unrealistic expectations, can you truly begin to sit back, relax, and start living your new life.  Usually from an easy chair or bed, but even the lazy life has its good points.

Unreliably Lame

A guest post by reader Katrina Branch. Katrina is working hard on her professional writing, and I can’t wait to share a link to her newest book.  (She’s shared a bit with me and it’s going to be a big success). Byronsheroes welcomes guest posts, and as editor I feel lucky that the site has so many talented writers (many of them professional, I admit to be an amateur).  Thank you Katrina for sharing your insight and also your talent as expressing yourself with the readers of the blog!

 

Sometimes I envy people with a cane.  If you are using a cane or have an arm in a sling, people look at you and think, “That’s unfortunate.  I hope it’s not bad all the time.”  They have sympathy; they can see that there is something medically wrong. If you are slow or late or have to back out of something, they think, “Oh, it’s probably that bum leg slowing her down,” and they are forgiving.

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When your medical issue is invisible, people aren’t so kind. They wonder, “Why is she walking so slowly down the grocery aisle? Is she lazy?” They tell you that they are disappointed that you’re late to a meeting; they question whether you value them.  Sometimes they don’t say anything, they just stop asking you to do things with them.  Even if you say, “I’m so sorry, I’m having a bad day,” they think you mean that you’re lazy or in a bad mood and just need to suck it up.

I may very well be in a bad mood, but I can’t just ‘suck it up’ and be efficient.  Some days it takes all I have to just get out of bed and get to the store at all—I’m cruising slowly down the aisle because if I make myself keep walking then I won’t just abandon my cart and go sit in the car and cry.  Sometimes the only reason I make it to a scheduled event is that I want to convey that I *do* care, very much, about the person I’m meeting or the group whose activity I am attending. I’m late because I have to actually prod myself to do each little step: Brush teeth; brush hair; put on clean clothes. Eat something, or at least bring a protein bar along in case the blood sugar gets dangerously low. Drink some water. Put on shoes. Get the purse. Put on the coat. Go out to the car—Wait! Go back, get the keys, then go out to the car. Put the garage door up.  Back down the driveway, close the garage door.  Deep breaths, remember where you are driving to and plan a route.  Every step, every piece needs to be thought about, because the auto-pilot most people rely on for daily living is offline for the day, the week, or—in really bad times—the month.

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Tiny Tim, now he’s get sympathy!

What I hate most about depression is that it’s so hard for normal people to grasp how damned hard it is to function at times.  It’s not that I’m ‘not trying’ it’s that I can’t.  I only have so much mental focus and energy, and I have a child and a husband. Maybe the dishes aren’t done every single day, but at least we have something to eat off of; my kid gets to school on time; most days I can get dinner made or reheated. I get the bills paid, the cats fed, the toilet paper restocked.  Sometimes that’s a labor that Hercules would struggle to complete. When a well-meaning friend says, “Have you researched X?” as a possible mode of treatment, I feel like screaming, “Don’t you get it? I can barely read the comics! I can’t research anything. I can’t think that clearly, and I can’t make that plan and spend so much time struggling through that process.  I’m barely able to make myself eat!”

If I developed a limp when my depression gets bad, I think people would look at my hesitant steps and my cane and realize that I’m not always *able* to do what I can do on a ‘good day’.  And I have no ability to predict what makes a bad day or a good day happen. I can do certain things that increase the likelihood of a good day: Get enough sleep; get some exercise; eat healthily; take my meds. I can try to avoid things that make a bad day more likely: Avoid some kinds of situations and people that awaken ghosts of dreadful times past.  But sometimes for no apparent reason the depression hits like a ninja, maiming my ability to function.  I have to limp through the day (or days) until the unseen injury heals.

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I’d rather just rest and heal….

I hate knowing people think I’m ‘unreliable’ because that sounds like I’m busy playing Nintendo or watching junk TV instead of meeting commitments or helping out with things. I’m as reliable as I can be within the limits of my illness. I don’t want to ever postpone or cancel something we’ve planned; I don’t ever want to not complete something I said I’d do!  I want to be on time, on cue, thorough, and helpful. I even want to be cheerful and fun. And sometimes, I can, I do, and I am.  But other times—I just hobble along leaning on my invisible cane, distracted and disabled by my invisible injury. It’s not about you, and really, it’s not about me.  It’s just depression, and I can’t toss my cane away and jog to the corner by ‘sucking it up.’ I can’t—not I won’t. It’s not a choice, it’s a condition.  If I had a cane, you’d understand.