Wednesday, 18 February 2015

When suck it up, becomes the only pain treatment you are offered.



I sat on the floor of my kitchen yesterday while the coffee machine heated up. I played with the annoying patch of skin in my cheek that was shredded by a potato chip the day before. Fragile skin that tears when I so much as look at a piece of crusty toast. Just another small gift from the gift that keeps on giving, my body. It's my 'loose tooth', I can't stop poking it with my tongue, but it's also a bit of a tell.

I have been mulling over yet another disappointing medical appointment. You'd think the use of the words "glycerine suppositories, followed by the really unfunny dad joke, "But don't worry it's not nitroglycerine. You won't blow up!" would be the low light. But in truth that just made me think of the "Suppository of Wisdom," quote from our delightful PM and I had a momentary internal giggle. Instead, it was the moment that my continuing abdominal pain came up.

Once the joy of chronic constipation was out of the way I foolishly asked once again what could he suggest. And I was summarily told that it was not his problem, and that

Nobody is going to take ownership for that.

I just have to manage it with pain medication.

But not narcotics. Maybe I could up my pregabalin?

But other than that I have to live with it.

He'd wiped his hands of the whole issue.

So I sat on the somewhat sticky kitchen floor, stewing and further wrecking the skin inside of my mouth. A mix of anger, frustration and sadness flowing through while my tongue worked furiously at the shredded flesh in my cheek.

I still don't know where I'm at with this. The pain is constant. It is disabling and it is incredibly, mentally draining. There is something about pain that the medical field really doesn't seem to understand. It is stigmatised and wiped away like an after thought. I watched a timely Insight program about pain last night. The difference in the way patients and doctors discussed it was illuminating. Listening to professional athletes whose pain is managed and supported by the experts that surround them, equally illuminating.

Living with chronic pain and discussing it theoretically, are worlds apart. As one of the speakers said the conflict over the use of disease or condition is largely academic. Those who study and hold the power, fight over the wording, while those who live with it try to get by with therapies that partially work. Dealing with burning and stabbing and zapping and crushing and all the myriad ways it presents.

Out the front of my GP clinic is a large sign that says they will not prescribe drugs of dependence except for terminal patients. In the ED I feel an inherent sense of guilt when I need pain medications, although in their defence I have had little trouble in getting them prescribed when I am curled up in a ball of teary pain. Do I want to take pain medications? The simple answer is no. Just like I don't want to take any of the medications I am prescribed. But equally I know that those same drugs keep me functioning. That without them I would not be able to write this post, or stand, or walk the few steps to my toilet. Similarly, adequate pain control gives me the ability to drive 3 hours to the city for my medical appointments and to sit on the couch with my family without tears. But access is complex. And there is a pervasive idea of the drug-seeker, seen in every patient who has chronic pain. That those who simply don't get over pain and require ongoing pharmaceutical management are weak. Friends who have used pain clinics tell stories of dismissal and blame. That they are not trying hard enough when they don't recover, when I know the lengths they have gone to to try and alleviate their pain. And compassionate pain doctors who become the exception not the rule.

Is there a psychological component? Of course there is. The way we approach things affects how we perceive them. The Insight program demonstrated that. But it is not the only component. And whether it is a factor in maintenance or experience of the pain, or a consequence of the physical, emotional and psychological stress of living with never ending, poorly controlled pain, or a combination of all these factors is unclear. Even the neuroscientist on the program admitted it was extremely hard to treat and we don't yet understand all the various mechanisms involved. Sitting watching him demonstrate the peculiarities of our neural networks I am reminded that little has changed since I undertook my training. And that while interesting, it is how we transform those peculiarities from parlor trick into adequate treatment, that remains problematic.

Patients with chronic pain continue to be stigmatised and abandoned. We are put in the too hard basket or doctors throw up their hands and don't even bother with a referral to a pain specialist. Needing pain management is seen as weakness. And instead of using pain medications to manage pain we must negotiate a system and society that sees such a need as drug seeking and to be avoided. And so I get to cry myself to sleep from the pain on more nights than I want to admit. I manage as best I can with mindfulness meditation, heat packs, gentle yoga, pain meds when I can't take it any more, and spend a lot of time trying to simply suck it up.

Now I have to contemplate trying to find a pain specialist. I get to find one myself as apparently no one wants to take ownership of my pain. In truth I don't want anyone to take ownership. It is mine and I own my experience of it. But I do want someone who can guide me beyond "manage it with pain meds." I want to be able to function. And I don't think that's a lot to ask.

Michelle.

I've put this song up before as it always speaks to me about pain and I love the idea of being able to wash it all away in the river. If only.

4 comments:

  1. Thanks for the link for the show.

    I understand your pain (boom tish) I am at the point now where the pain meds I could take have caused an ulcer and the others bottom out my blood pressure. It is hard not to feel angry and cast aside when it has taken so long to get someone to take your illness seriously and then only to be told that they can't actually fucking help.

    x

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    1. Oh Kelley, talk about rock and a hard place. Ulcer and drop bp or pain relief should not be your only options. I'm so tired of always having to work so hard to get help. I think we need to get together one day and drown our sorrows in a margarita or six. xx

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  2. I appreciate your honest portrayal of living with pain and the shame we are forced to feel when we need medication. Check out this youtube video of a speech given... the part about criminalization of pain meds is near the end http://youtu.be/6UyPlF66KME It is unfair that those of us living with pain as a daily reality are punished for healthy and able bodied people's addiction to pills as recreation. And let's not even get into how the majority of everyday people "self medicate" with alcohol and how many lives that claims each year. I am completely feeling you because I am down to my last week of pain meds and am not sure if my doctor is going to prescribe another round before my next procedure... Love your blog!

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  3. Hi Michelle, I am a chronic pain patient too. I can understand what you are experiencing. The only thing that helped me come to terms with my illness was my photography work. Now I'm writing my PhD about the experience of life with chronic pain not only as a patient but as a family too. You can see a little bit of my work here http://patwalton.simpl.com and here patwaltonphotography.com
    Pat xx

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All who are lovely enough to comment should be showered with cup cakes, glitter and macarons. I promise to use my spoon bending mind powers to try and get that happening for all who are lovely enough to share their words. Those who go the extra step to share posts should really get a free unicorn. Or at least the gift of finding the shortest and quickest line at the supermarket on a regular basis. xx