Working Through the Pain

 "Life is pain, highness. Anyone who tells you differently is selling something." - William Goldman,

The Princess Bride

Long post today and I promise the next one will be fun, short & more joyful.  But for those to find things TLDR, (too long didn't read meme), a key take away is the phrase:  Life is pain and anyone who says differently is lying or trying to sell you something.  Also:  Do not assume you can trust anyone simply because they are in a professional field.  All professionals operate on a scale, much like pain. 

If you couldn't guess by now the Princess Bride was one of my favourite movies.  Much like the Princess Bride I find chronic illness has large amounts of physical pain that can be debilitating and emotional pain as you grieve for what you have lost.  What a cheerful children's movie it was, a comedy with lots of pain and grief experienced by the characters, showing how they survived & pulled through it.  Having both can torment the mind so it needs to be a process of constantly adapting to the next level, like a fish travelling deeper into the water experiencing a higher pressure.  Often at the depths we are at now burns & cuts barely register.  If I hold my hand against metal heated to 180 degrees and I could tell you it would be more annoying than register as really painful, because waiting for burnt skin to heal is a hassle, especially on your hands, whereas the feeling itself is now what I class as mild.

 Deep Sea Anglerfish Predation, by Matt Danko. Where deeper levels of pain do not look pretty.

Yes I have burnt my hands a lot like that. During periods where ME makes hand control really difficult & basic cooking can turn into the most challenging marathon with broken glass strewn along the path representing the number of times I end up accidentally dropping things, cutting myself, burning myself and just taking a really long time to make breakfast, (1 and a half hours of constant mental will to reach the end of making a basic meal, even as simple as toast, regardless of injuries).  Hence during really bad days I often have to forgo eating until recovery to a better level.  Pain can cloud your focus, it can swallow up your energy.  In many ways the experience of pain itself can be worse than the source & feeling of pain.  The mind itself wants to pull away and torments itself by not being able to.  Pain is used as an alert to a state of physical danger or a warning of illness and exertion but it should never be allowed to take control.

It is by will alone I set my mind in motion. - Frank Herbert, Mentat Mantra in Dune

There is a test in Dune in which the lead, Paul, is asked to place his hand inside a box, he is told if he takes it out of the box before the test is over he will be killed.  The test of the Gom Jabbar is a test of will-power and discipline.  Even with one's life at stake, it takes strong self-control to deliberately endure agonizing pain.  The pain caused by his hand being inside the box is a burning white hot heat, searing.  He does not pull away by reflex like many animals would by instinct nor seek to trick his mind to delude himself that pain is something he should control.  It is there, it must be endured, but it is not going to consume the drive & willpower. "I must not fear. Fear is the mind-killer. Fear is the little-death that brings total obliteration. I will face my fear. I will permit it to pass over me and through me. And when it has gone past I will turn the inner eye to see its path. Where the fear has gone there will be nothing. Only I will remain."

The feeling of the Gom Jabbar Test of Humanity

Having chronic pain from disease or through genetics is a symptom but it is there to be lived with.  Only when it becomes a warning for something more medically serious do we identify it as needing urgent attention.  Similar to grades of allergic reactions, most will be manageable due to known conditions and can sometimes be aided by prescription medication.  Day to day symptom levels can be added to doctor's notes at regular appointments to mark the current status & development (i.e. degeneration of muscles through FSHD, or the effects of severe headaches, joint pain, IBS, allergies, and infections of ME).  But when it gets to the point of anaphylactic shock seeking medical help should be done immediately.

There are a variety of different pain medication types for different medical issues. Often they come with side effects which can be worse than the pain and often they may not do much to reduce pain.

Unfortunately I cannot take most pain medication safely, and that is common in my family strangely enough.  Opioids give me severe nausea to the point every part of the flesh feels like retching itself away from my bones (as in violently throwing it up, not just wrenching away although they do sound similar).   Non-steroidal anti-inflammatories, NSAIDs, do nothing for the original pain, add much more pain to the gut (like acid in all the wrong places), and knock me out like the most effective sleeping meds.  Bad if you need to be conscious and not as useful as it would be the worse sleep due to increasing pain, and waking up in pain frequently.  Tricyclics don't do anything much at all, but at least there are no huge side effects like the others.  They are only useful to me in so far that they can reduce anxiety a little bit, much less than owning a cat so not worth the cost.  Triptans also do nothing for the pain but come with even more negative side effects.  Seriously I can have more serious and severe reactions to pain medication than the original pain itself so I am left with few options.  I need to handle the pain and work through most of it.  Even the most effective pain meds with the least negative side effects I use only when severe pain is hampering conscious thought and the effect of them is like a feather being lifted off.  Not a lot of help at all.  Perhaps only enough to blunt the knife like stabbing, but I know those meds when used infrequently will not affect me long term.

Grading your pain can be subjective so it is good to identify with a doctor where you are on a standard scale... Even then they can still have bias towards your answers

Also doctors are increasingly adverse to prescribing pain medication or listening to pain scores from women & certain social groups.  They may discriminate against your statement of pain, (usually framed in the scale of 1-10), if you take any pain medication for it, or often even if you don't.  They will be less likely to provide pain medication, or any treatment to me when it is so incapacitating that I am on the floor and unable to breathe adequately, (screaming silently in pain due to not getting enough air).  However for my husband they will shower him with opioids & strong pain medication for something he can quite easily ignore to the point we are the ones suggesting a limit to the scripts not the doctors.

This implicit bias affects many people.  They probably though don't have the luxury of seeing the difference in medical attitude right there in the same appointment next to them.  My husband and I often have our medical appointments together to act as each others advocate so we can visibly see the difference right there in the same session as the doctor turns from one to the other.  One doctor even ignored everything I said for a year & did not bother to take notes for me while I was so sick I would be barely able to work & needed my husbands help to walk but would diligently record & make referrals for my husband for minor twinges that we thought we should note as part of regular status updates.  We are more used to seeing bias though, for years my husband was told his muscular dystrophy was in his head or he was on drugs, all while his muscles were deteriorating to the point he could no longer run.  It took another set of doctor changes to find one that even listened to him & send off for genetic tests which confirmed his FSHD.

The difference can be striking, depressing, cause cognitive dissonance as you trust the medical professional to be professional & without significant bias.  Unfortunately for many they cannot do much about the doctors reaction.  You cannot completely remove someone else's bias and often cannot afford second opinions.  Even a doctor change can be fruitless.  We have run a gamut through over 10 so far in the past few years.  Some have lead to deadly situations where internal organ bleeding, overdose & death is on the line (we switched doctors due to distrust in someone not checking for counter indications or dosage), some have even just been apathetic about their work.

When doctors rely on certain methods for patients with severe chronic pain. Picture by axelpfaender

For me the complication of my medication complications just adds to the fact that when I do desperately need help, and do finally find a medical professional who understands pain management, and they do decide to prescribe something they likely will just be inclined to the pain medications I cannot take.  Upon which on finding opioids & NSAIDs are not advisable for me they will just be struck dumbfounded as if they have lost the keys to the car and are struggling to search through foggy memory.  Many doctors have used opioids and NSAIDs as a catch all cure for pain.  When in many cases treating the cause of severe pain & helping manage through the effects needs more than a regular medical script and hundreds of dollars wasted in medical bills for off the counter medication.

Getting a medical advocate even to help with communication & taking notes when you are seriously ill in medical appointments can be a big support.

In essence the best step in regards to medical aid for pain we can do is to learn as much about the likely triggers, warning signs, levels, building & understanding our tolerance, potential medication (which includes reading the data sheets, chemical & medical research), etc.  Also it is immensely helpful to have an advocate who we trust completely available to help in appointments where it will be difficult to communicate with a doctor.  We take notes during appointments to remember key terms to say to a doctor.  To frame things in the manner they are more familiar with.

Especially check on anything doctors & specialists suggest for prescriptions and double check the dosage is right for us.  We have lost friends to prescribed medication, almost lost ourselves, so now we do not implicitly trust prescriptions simply because of the guise they wear.  Do not assume a pill will stop the pain but equally learn to recognise when things get serious to ask for help.  Where any relief or treatment can mean the difference between writhing in pain on the floor with difficulty in breathing to being able to sit up with some functionality and mental acuity.  Sometimes pain medication can help but equally much of it will have side effects and counteractions with other medication.  My husband and I try to accommodate more pain to build up a tolerance without medication to save it for when it is really needed and we cannot work through it.   

Comfortably Numb - Pink Floyd

Hello,
Is there anybody in there?
Just nod if you can hear me.
Is there anyone at home?

Come on now
I hear you're feeling down
Well, I can ease your pain
And get you on your feet again

Relax
I'll need some information first
Just the basic facts
Can you show me where it hurts?

There is no pain, you are receding
A distant ship smoke on the horizon
You are only coming through in waves
Your lips move but I can't hear what you're saying
When I was a child I had a fever
My hands felt just like two balloons
Now I've got that feeling once again
I can't explain, you would not understand
This is not how I am
I have become comfortably numb

I have become comfortably numb

O.K.
Just a little pin prick
There'll be no more aaaaaaaah!
But you may feel a little sick

Can you stand up?
I do believe it's working, good
That'll keep you going through the show
Come on, it's time to go.

There is no pain you are receding
A distant ship smoke on the horizon
You are only coming through in waves
Your lips move but I can't hear what you're saying
When I was a child
I caught a fleeting glimpse
Out of the corner of my eye
I turned to look but it was gone
I cannot put my finger on it now
The child is grown
The dream is gone
I have become comfortably numb.