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.

 

“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.”

AP Article: “No painkillers please, we’re British”

“No painkillers, please – we’re British”

This article paints a strange picture of the NHS – and not an accurate one at all.

I live in the UK (have been here for the past 3 years), and have had severe chronic pain for the last 8 years. Before that, I lived in my native country of Canada. My husband has fibromyalgia. You can read what that’s like here.

Both Canada and the United Kingdom, unlike the United States, have socialized medicine. I believe that socialized medicine is far superior to the American medical system, despite the complaints I see online every day. I believe this because I have dealt with it since I was born and had to be rushed to the NICU of a Winnipeg hospital because I weighed only one kilogram.

Whoever wrote this article needs to be shot – look at the last paragraph. “These days, [the patient in question] manages his pain with ‘occasional’ use of acetaminophen, diazepam, and MST, a type of opiod drug.”

Apparently the author of the article thinks his readers are idiots.

For those of you who don’t know, MST is a sustained-release form of morphine, taken in doses every 12 hours. Under no circumstances is it an “occasional use” form of medication. So they’re trying to paint a picture of it being the situation of him “being off all drugs but it’s OK he’s just on morphine“. Do they think their readers are really that stupid that they’d not understand how much pain he’s in? You cannot, I repeat cannot, use MST “occasionally”. If that were the case, the patient would rapidly suffer dangerous and acute withdrawal symptoms. It is very important to take this medication on a strict schedule: every 12 hours. Patients on this drug, however, are not properly called “addicts” – this is most correctly termed “dependency”.

This article is complete and utter GARBAGE!

(I know about morphine specifically because I was prescribed MST for two years in Canada and the UK, from 2007-2009, before we dealt with my hydrocephalus-related headaches at that point. That is a very long story which I won’t get into in this post. Suffice it to say that I’m having those sorts of headaches again, but this time I’m refusing opiates until we can try and get the shunt malfunction sorted. MST side effects are often more unpleasant than any relief it might give me). I am quite sure that at this point, if I asked for it, I would be given morphine. But I’ve been down that road before, and I would really rather not go there again until we have absolutely exhausted all other avenues. And we’re not there yet.)

Another error that the article makes is the impression it gives of how physicians in the UK treat their patients. It gives the impression that British doctors are cold, uncaring, and deny suffering patients painkillers and tell them to suck it up. That’s not true either.

If your doctor agrees that your condition warrants it, you can get paracetamol (Tylenol) and ibuprofen by prescription, in larger quantities, contrary to the impression the article gives. For instance, I have painful inflammation in my lower legs, for which I take sustained release Tramadol (150 mg, twice a day)  and ibuprofen (400 mg, two to three times a day as needed). Without either, I am literally in so much pain that I cannot walk.

Instead of making me pay for hundreds of boxes of ibuprofen at Boots each month, my doctor writes me a prescription for 84 tablets of 200mg ibuprofen each month. Since prescriptions on the NHS (The UK’s National Health Service – socialized medicine, like Canada has) are free to those families like mine who are receiving a Working Tax Credit,  I don’t have to pay for them.

Morphine is available in a format that is taken every 4-6 hours. This is *not* called “MST”. “MST” is the British trade name for sustained-released morphine; the American trade name for sustained-release morphine is MS Contin (I was on this in Canada, and was switched to MST when I moved to the UK). Cavalier misconceptions about chronic pain patients really piss me off, because on the whole, they are usually stated by people who are not suffering from these problems and so have not the faintest fuck of an idea what it entails.

The article perpetuates the ridiculous stereotype of the British “stiff upper lip” in its title: No painkillers, please – we’re British.

It has been my experience that doctors, no matter what country they live in, do everything they can for their patients who are in agonizing pain. They don’t want to have to give their patients opiates or to perform major, risky surgery, but when it gets to the point where nothing else works, then relief must be given.

 

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?