On “Transcending Pain”

I’m a chronic pain patient on morphine.

It amuses me when healthy people ascribe romantic ideas or evaluations of the experience of pain, especially chronic or severe pain the likes of which most of them have not experienced.

More than once, I’ve been told by different healthy people how inspiring I am, or how I rise above the pain to knit, study or just be a functional adult in my normal life. I’m not the first, nor the last, disabled woman to have this revelation (but this is an excellent post by the Disabled Feminist that reinforces my thesis).

On some level, I realize that most of them only mean well, but still, those types of people make me want to crush their larynxes with my boot.

They don’t usually see me, or other pain patients (such as my husband and sister who both have fibromyalgia), on the really bad days, because on those days, we’re not well enough to grace them with our magical, inspiring presence.

The modern vomitorium.

I’m betting that the screaming, throwing up and moaning from pain is sooo not in their idea of the romantic.

If, by the end of reading this post, you still think I and other disabled people are inspiring, please check out another post of mine, and a different post by the same blogger, Disabled Feminist.

But I hope, instead, that a lightning bolt of reality has benevolently struck you.

 

ICP Monitoring: What Happened, the Results, and What We are Doing Next

I got home from the hospital on 22 February. This blog post is intended to explain what happened, the results (and what they mean), and what we are going to do next in dealing with my severe chronic headaches.

I have to assume that my readers do not know all the ins and outs of neurosurgical treatments and diagnostic tests, so I’ve tried to write this post in such a way as to be as clear as possible. When you are a neuro patient as long as I have been (my entire life), you get used to talking in different ways depending on who you’re talking with. I’m used to talking most frequently to doctors, so if what I say confuses you or is too technical, let me know and I can try and boil it down.

As always, please write to me if you have any more questions, or leave a comment at the bottom of the post.

The Recap:

I had elective intracranial pressure monitoring done from 17 February-22 February 2012, to rule out whether or not my shunt or hydrocephalus is responsible for my chronic severe daily headaches. We knew going into it that there was a possibility of the hydrocephalus or shunt being completely uninvolved in the headaches, and this test was the way to find that out.

In my case, there are two outcomes to this procedure:

1) It shows that there is something abnormal about my ICP, which could account for the headaches, in whole or in part.

2) It shows that my ICP is within normal range, and is therefore not a factor in what’s causing the headaches.

What we found out is the second point: my ICP is within normal ranges. 

ICP monitoring is not a treatment; it is a diagnostic test only. My headache levels and frequency remained the same in hospital as they have been for the past few years. We (DH and my other family members who are intimately familiar with my medical history) are not surprised by this because we were aware that ICP monitoring is not a treatment in the sense that it, by itself, would have any effect whatsoever on the headaches. So, at the end of it, we well expected me to be feeling pretty much the same (shitty) as I did before having the monitoring done.

 

What Happened:

I was hooked up to it for 48 hours initially (which is the standard amount of time for continuous monitoring), and when my neurosurgeon (“consultant” in UK English, and “attending” in American English) came in on Monday morning (21 February), he wanted me to have the monitor on for an additional 24 hours. At the time he said this, he didn’t explain things further, and I was happy to stay in for another day (though not ecstatic about it) because I was able to get him to explain why he wanted to extend my length of monitoring. He wanted more data: in a sense, he wanted a bigger sample size of the way my ICP behaves over time.

If you know anything about statistics like I do, having a larger sample size of the data you want to collect is, most of the time, a good thing. It means that the neurosurgeon has more information to work with. So, I could well appreciate the need for more data. My case is complicated, and the more information we have, the better the chances of understanding what is going on.

The Results: 

My ICP is in the range of normal. This means that it is not causing my headaches. They also checked everything else:

-I’m not overdraining, which means that
-The shunt is still tied off, as it should be
-My ventricles are a decent, normal size, and are not appearing to be slit ventricles
-There is no evidence that my hydrocephalus is “active”; that means that the ventricles are not enlarged
-There are no leaks of cerebrospinal fluid (CSF)

I asked the neurosurgeon registrar to explain how exactly they know that it’s not my ICP that is responsible.

If I had either low or high ICP, they would have seen a longer run in the data of numbers being closer together, during certain activities like sitting up, lying flat, coughing, straining, etc. For example, my pressure, if it were low, could remain at -1 for 6-8 hours. It didn;t show that. My data shows a mix of different numbers all over the map, but nothing that is particularly high enough or low enough, for a long enough time, to make them pin down the ICP as a cause.

What We are Doing Next:

The neurosurgeon has referred me to:

-Neurology unit, where presumably we will continue to investigate what kind of headaches these may be. I have also been referred to

-The pain unit.

For now, I’m under orders to stay on my current medications, which include sustained release morphine pills (maintenance), Tramadol and Gravol, with Diazepam for sleep (breakthrough medications).    However, since the hospital doesn’t dispense Tramadol, they gave me Oramorph for breakthrough pain while I was there.

Nurse: “Would you like some Oramorph?”

Me: “Hell yes!!!”

It worked much, much better than Tramadol for breakthrough pain, and so when I see my GP on Tuesday, we’ll be asking her to put me on Oramorph oral solution, instead of the Tramadol. For some reason, hospital staff are much less stingy than GPs with regard to prescribing opiates that have a chance of working.

...Or else it gets the hose again.

It tastes like crap, but Oramorph worked very well.

 

The State of the Union is that my headaches are exactly the same as they were before ICP monitoring. This is an expected scenario because by itself, monitoring doesn’t treat anything (unless it’s the type of patient who requires the CSF to be drained, and then they put in a special type of monitor which provides for draining off the excess CSF at the same time as monitoring the pressure). This is the type of ICP monitoring that my friend, Alexa, had.

The type of monitor I was on was the least-invasive type, did not require CSF to be drained, and they didn’t need to shave off any of my hair (for which I am grateful).

The reason we’re just in a waiting pattern right now is because a GP is not qualified to try out any migraine or other headache medications on me. That’s what neurologists are for. So, when I see the GP on Tuesday, they will not be permitted to change any of my medications except to replace my Tramadol with Oramorph.

"I'm sorry, but we are off the Bullshit Painkillers That Aren't Going to Work menu, now."

Commander Data to the Bridge, Please!

A public service announcement:

Beware, peeps: my severe pain, lack of good sleep, and meds (morphine, Tramadol, etc) can make me very blunt at times.

I’ve been kicked out of closed groups on FB and message boards even when I’ve explained the medicine, neurosurgery and neurology behind it many, many times. Like I said to a spoonie Facebook friend – some people just. Don’t. Get it. – especially if they have never had to deal with chronic pain. 

1) I have a big problem when people are being willfully, continually ignorant or stupid – about anything – and I have no problem telling them straight to their faces.

2) I can’t interpret sarcasm AT ALL, either. On the other hand, I have a quirky sense of humour and love giving hugs and cuddles, so hopefully that balances things out.

"I just...love scanning for life-forms!"

My DH calls me “Data”, after the Star Trek Next Generation character, because:

3) I really have a tough time interpreting emotions right now. 

I think a lot of the reason behind it is that sarcasm simply cannot be adequately communicated in a print-only format. So much of human emotion is conveyed by facial expression and tone of voice – and that’s something Facebook cannot provide.

4) I tend to ask people directly if they’re being sarcastic – it’s the only way I can know for sure.

We now return you to your regularly scheduled programming.

Sidenote: I’m composing lyrics based on the “Life Forms” song, set to the music of Andrew Lloyd Webber’s Music of the Night from The Phantom of the Opera

And I just have to include this. This post would not be complete without it.

“Holocaust Memorial Day – Black Triangle” by BendyGirl

http://benefitscroungingscum.blogspot.com/2012/01/world-holocaust-memorial-day-black.html

Today, Holocaust Memorial Day, this article by BendyGirl highlights something very important for me: that disabled people were the first to be targeted by the Nazis. Her eloquence is superior to mine today, but I will try and give a brief summary, and you can click on the link above to read the article.

The “black triangle” mentioned in the title refers to the concentration camp badges that the Nazis designed. Disabled people and “asocials” wore it.

Different colours designated the prisoners in whatever way Hitler’s regime had marked them as “undesirable”. The large variety of different combinations and colours boggles the mind – a testament to the Nazis almost compulsive need to label everyone and to keep records of the atrocities they committed.

Yellow Star/Yellow Triangle: Jews – this is perhaps the most familiar one. The yellow star was created by superimposing one triangle over an inverted one.

Pink Triangle: Homosexuals – the movie Bent (with Clive Owen and Lothaire Bluteau) tells the story of a gay man’s ordeal at the hands of the Nazis, and of how he falls in love with another prisoner when he’s thrown into Dachau concentration camp. (“Bent” was a slang term for gay people.) He denies his sexuality by identifying himself as a Jew and wearing the yellow star instead of the pink triangle, believing it will make it possible that he might survive longer. Horst, the prisoner he falls in love with, wears his pink triangle with pride. The ending ripped my heart out.

Dachau is also one of the camps that had “the most elaborate system” of branding the prisoners with these labels.

Black Triangle: “Asocials” – this broad category included the disabled, lesbians, and the “work shy”.

If you were unlucky enough to be in more than one category, one triangle would be superimposed over another. More information about them can be found here.

Although today, the disabled are not forced to wear identification badges, we’re still singled out and cannot be invisible much of the time due to the nature of our individual disabilities. We’re immediately identifiable to the naked eye if we limp, use a cane or wheelchair. For those of us with “invisible disabilities”, it’s more difficult because we’re in some way expected to “prove” that we are disabled because there may not be readily identifiable characteristics to our disabilities.

I was at the doctor’s yesterday, and I was finally put on extended-release morphine for my severe, chronic headaches that are caused (probably) by low intracranial pressure secondary to hydrocephalus. I was very nauseated as I walked into the consultation room with my husband, and as we entered I told the doctor this because I wanted to know where I should throw up if I needed to: in the sink or in the garbage bin. I’d had a very severe headache for most of the morning that continued through the appointment.

After my husband’s appointment, I went next.

As I sat down next to her desk, the doctor’s first words were, “Well, you look healthy.”

Disabled people are not invisible even if you can’t see their pain.

Some days, I wish that I could be.

As BendyGirl ends her post, so will I:

To mark World Holocaust Day, please remember,

“First they came for the disabled people
And I did not speak out because I was not disabled.”

A Proper Pain Scale – Update!

I’m seeing the doctor again tomorrow for another adjustment to my pain medications. The current ones (Topiramate, Imigran) are NOT working, and I’m on a waiting list – apparently a very long one, for intracranial pressure monitoring. Pain levels (intractable headaches) are far too high. Ideally they should be negligible, but since we don’t live in a perfect world, I’ll settle for “I’m not screaming two hours before I’m allowed to take the next dose of Gravol”.

I can handle pain that is below a 6/10 on my scale. My 6 is probably a non Spoonie’s [normal person's] 8.

I take Imigran whenever I damned well please, even though technically you’re only supposed to use it a few times a month. Sometimes it works, and sometimes it doesn’t.  They can kiss my tukhus. But luckily the doctors know I’m taking that much, because they refill it without a fuss.

Here’s the pain scale I use, written by Allie, over at Hyperbole and a Half (reprinted here): http://hyperboleandahalf.blogspot.com/2010/02/boyfriend-doesnt-have-ebola-probably.html

1:  I am completely unsure whether I am experiencing pain or itching or maybe I just have a bad taste in my mouth.

2:  I probably just need a Band Aid.

3:  This is distressing.  I don’t want this to be happening to me at all.

4:  My pain is not fucking around.

5:  Why is this happening to me??

6:  Ow.  Okay, my pain is super legit now.

7:  I see Jesus coming for me and I’m scared.

8:  I am experiencing a disturbing amount of pain.  I might actually be dying.  Please help.

9:  I am almost definitely dying.

10:  I am actively being mauled by a bear.

11: Blood is going to explode out of my face at any moment.

Too Serious For Numbers:  You probably have ebola.  It appears that you may also be suffering from Stigmata and/or pinkeye.”

 

How this applies to me: 

Below a 6 is basically nothing to me. I don’t take meds, and I just do my thing: knitting, posting online in Amazon, etc: ”Hey, I’m not wearing any pants. I didn’t know that about giraffes. I’m sorry your cat died; can we talk about something else?”

So, my 6: “Ow. Okay, my pain is super legit now.”

Is your 8: “I am experiencing a disturbing amount of pain. I might actually be dying. Please help.”

When I get to a 9 or higher (“I am actively being mauled by a bear.”), I lose the ability to talk, and just make vague sounds.

15 January 2012: I’m not leaving the office tomorrow without something, and mark my words – it will not be paracetamol or another migraine medication, because those won’t do beans.

16 January 2012: Idiot put me on Tegretol and insists on treating these as migraines. Refuses to explain why.

18 January 2012: Had to discontinue the Tegretol because it caused severe RLS. It didn’t do anything for the pain.

UPDATE! January 28, 2012

A different doctor at the practice finally relented, and, after an hour-long appointment of wrangling and discussion this past Thursday morning, put me on sustained-release morphine, plus instant-release Tramadol for breakthrough pain. Gravol for the nausea, and Diazepam so I have a better chance of getting some sleep (which also means DH gets a better chance of sleep).

[As I walk into the office on Thursday morning]: “I’m going to throw up. Where do I do it – the garbage bin or the sink?”

Rhys Morgan’s “Remission” – My Adaptation

Rhys Morgan – The Welsh Boyo blogger famed for cracking down on Miracle Mineral Supplement (MMS) and other alternative medicine quackery, wrote this brilliant post about his remission from Crohn’s disease. I asked him if I could adapt it for my own chronic neurologic and neurosurgical stuff, and he gave the go-ahead. 

For the last time, before I get any more stupid comments suggesting some ridiculous quacky cure…

Unless you are a neurologist/neurosurgeon or some expert on migraines or hydrocephalus, I don’t care what cured your friend when you suggested it to them, I will not use your cure/treatment.

This includes:

  • Standing on my head – with or without my bum against a wall and my legs raised over my head (yes, someone has actually recommended that to me!) 
  • Herbs
  • Essential oils
  • Aromatherapy
  • Unproven treatments
  • Cutting out dairy (sugar, chocolate, coffee, tea, babies, red meat…)
  • Actually, cutting out anything from my diet

The main reason for this is because I’m on a treatment that is (sort of) working.

I am in remission. But my headaches cannot be cured. They’re not the kinds of headaches normal people get.

I like my milk. I like my food. They do not cause me any headache-y issues.

None. Nada. Zilch. Nothing.

Therefore, cutting them out of my diet would be pointlessly cruel to myself. I don’t need to cut them out, therefore I won’t.

A shunt for my hydrocephalus is not the same thing as a stent. Every time someone confuses these two things when asking questions about the shunt, and I have a headache that is a 7 out of 10 on the pain scale, it is very aggravating and tiring to have to explain the difference, again. I’ve provided an explanation of the difference between these two devices here.

I don’t go round trusting any ol’ person. If I want any serious advice on my hydrocephalus or treatments for it, I will go to my doctor. Not the internet.

Kthxbi.

Hamlet Takes Medication

Oh, that this too, too brittled flesh would melt
Thaw and resolve itself into a dew,
Or that the Everlasting had not fixed
His canon ‘gainst self-medication. Oh God, God,
How weary, stale, flat and unprofitable

Seem to me all the ERs of this world
Fie on’t, fie, tis an unweeded garden
That grows to seed. Things rank and painful in nature
Possess it merely. That it should come to this:
But two months in pain, nay, not so much, not two,
So excellent a painkiller, that was to this
Gravol to a Tylenol, so soothing to my headache
That he might beteem the winds of heaven
Visit my forehead too roughly. Heaven and earth,
Must I remember? Why, he would hang on my eyes
As if increase of appetite had grown
By what it fed on: yet within a month -
Let me not think on’t; frailty, thy name is Advil
A little month, or ere those pills were old
With which I drugged myself,
Like Sleepy, all yawns, why he, even he -
Oh God, a pill that wants discourse of pain
Would have worked longer! – mixed with my Tylenol,
My Advil’s supplement, but no more like my Gravol
Than I to an athlete. Within a month,
Ere yet the salt of most pained tears
Had left the twitching in my pale face
Gravol increased. O, most wicked speed to post
With such dexterity to mixed medications!
It is not, nor it cannot come to relief.
But break my heart, for I must hold my tongue.

I wrote this in February, 2006.

 

Chronic Pain

I don’t think, until and unless people have had chronic, unrelenting, severe pain for months or years on end, they can really understand what it’s like. People try and compare different acute pains to chronic. Good try…but it’s not the same thing. Chronic severe pain sucks the life-force right out of you. If I believed in the soul, I’d say it sucks that out too.

Unpredictably, your entire plans for the day can be rearranged in a millisecond depending on the maniacal whims of the pain in your body that you have absolutely no control over. You learn to be flexible. I used to get really annoyed at having to not do this or that at a moment’s notice. Now I know to have a number of variegated contingency plans ready in case either of us crashes.

I’ve heard people attempt to compare having fibromyalgia to having the flu. My husband has fibromyalgia. I don’t (I have cerebral palsy and hydrocephalus – the conditions that cause my pain). I’ve had the flu.

Influenza usually lasts a week or so.

Fibromyalgia has the following symptoms:

-chronic, widespread pain

-allodynia (a heightened and painful response to pressure)

-debilitating fatigue

-sleep disturbance

-joint pain

-brainfog

Some patients experience varying degrees of these symptoms. Not all patients have all symptoms, but most patients have the pain, allodynia and fatigue.

Unlike the flu, these symptoms do not go away, although the patient may have good days where symptoms are less troublesome. There is almost always some level of pain present.

Historically, fibromyalgia was considered to be a neuropsychiatric disorder (i.e. “it’s all in your head”). Since doctors couldn’t see anything wrong with the patient, and tests couldn; pinpoint the problem, they gave up and assumed the patient was malingering.

Male patients seeking pain management treatment have a harder time getting proper treatment. Unlike females, they are socialized to “man up”, “bear their pain like a man”, and other such silly and unhelpful trite suggestions. It’s bollocks.

Why is this post ending so abruptly, you might wonder?

Because I forgot what the next bit was going to be about.

Brain fog!!!!!

 

Yarn and Chronic Illness

Do you have a chronic illness that makes your skin hurt, or sensitive to different touches and fabrics? You’ve come to the right place!

I have had severe chronic pain since I was 18, and have many friends with chronic illnesses. I met my husband on a website for people with chronic illnesses. He has fibromyalgia, which is a neurological disorder that means his brain often interprets inert stimuli as pain. Another mutual friend of ours, @Clairepie (on Twitter) has fibro as well, and I knitted her a blanket from Lion Brand Homespun yarn, a soft, acrylic. Homespun is consequently a yarn I use often; it works up quickly, and is super-soft and easy to care for.

Lion Brand Jiffy yarn, though it is 100% acrylic, does feel a little like mohair – slightly scratchy. I was quite surprised when I first began to knit with it how rough it felt. Eventually, I got used to it, but I’m not sure I’ll use it again for that reason. This is the yarn that I’m knitting the Shivanaut scarves with.

I need some new ideas…

So, I’d like to hear from you! What kinds of yarns would you like to be available in my shop, that would be comfortable for YOU?

Doctor appointment tomorrow

I’m seeing the doctor tomorrow, because he wouldn’t do his job last week. Last week’s appointment was supposed to be a routine request for repeats, a referral to a neurologist (start as early on it as possible because it takes a long time) and an increase in my duloxetine for migraines.

He refused to increase it last time until he’d bothered to read my records and the consultant note authorizing the use of this med AND authorizing increase of dosage, which isn’t licensed for migraines. 20mg is not enough. I am in PAIN EVERY DAY!!!!! How DARE he refuse to treat me!!!!! The one-page consultant letter was right there on his computer, and in the five minutes last week we spent arguing with him about it, he could have read it. He refused to until I come back tomorrow. I burst into tears when he said ”I’m not going to do that.” for the second time. Refused to do me a neurologist referral (which I desperately need and will take at least 3 months), refused to increase my meds. When I said I’d end up in the ER if he didn’t help me, Nath (DH) ripped him a new one. Then he finally prescribed my current dose of 20 mg. But he didn’t stick it on repeats like the rest of my medications.

I want to plunge my knitting needles into his eyes. Maybe I should buy and wear this t-shirt to the following appointment?