Let’s talk about pain

I went to have my wounds cleaned and redressed yesterday at the hospital. The waiting area was hot, crowded and noisy. Loud enough that I couldn’t hear the real life crime programme on the tv screen, meant to entertain us. After 15 minutes of waiting, in dashed a harrassed looking woman hunting for a seat. It took me a few seconds to look past the normal clothing and perfect make up and see the poorly patient I spent four days opposite on the ward.

We greeted each other like old friends who had been separated by years and miles. There was much squealing and gentle, affectionate touching of arms. Air kissing has become useful and meaningful for the first time in my life. It allows for intimacy without painful body contact.

She moved a chair to face me and we shared our week’s stories of devastated energy levels, small triumphs and frustrations, compared pharmacology and talked about poo a LOT. She also caught me up on what happened on the ward after I left. I was the first to escape out of our four inmates and carry the guilt of leaving them behind.

My neighbour, the one who rebelled in the wee hours of Day Four, got out the day after me. As did the patient diagonally opposite me. But the woman I was with now in the waiting room was the one with the most complications. I wasn’t expecting to see her so well so soon. I had left them with my cafetiere and they toasted me with a freshly brewed pot. Later that same day the cafetiere was confiscated by the nurses. They did bring them coffee from the pot but the freedom of making their own whenever they wanted had been snatched away.

After everyone else was discharged my friend was left alone on the ward, so they transferred her. To the men’s ward. She then contracted an infection but there was no scanner in the hospital so she was emergency transferred to another hospital.  Her surgeon came to visit her there and stood at the bottom of her bed and scolded that it was her fault she was so sick because she ‘accepted too much morphine’.

Pain is a tricky beast. It is individual. It has multiple sources. It is not well understood. Luckily we have made some progress but it wasn’t until the late sixties that pioneering nurse Margo McCaffery’s description was accepted that “Pain is whatever the experiencing person says it is, existing whenever he says it does.”

Pain is self reported and subjective. Every person experiences it differently and some drugs work better than others. My pain management plan stuck to the standard. Paracetamol, ibuprofen and codeine for breakthrough pain. I knew the value of keeping ahead of pain so I ignored the nurses and took all these drugs every six hours on the dot. I set my alarm now and time my sleep around it.

Best practice on pain management is still patchy. 17% of women who receive a single breast reconstruction experience severe pain the first week after surgery. The NHS target is 5%. Entangled in that reality studies have shown that women and ethnic groups are discriminated against when reporting pain and being prescribed medication.

I witnessed several incidents when my friend reported pain to nurses and doctors and waited an hour or more for medication. One morning she dropped one of her Tramadol tablets and asked the nurse to find it.  Nothing happened for more than an hour. I got out of bed and painfully shuffled to the reception desk and repeated the request before action was taken.

Meanwhile, my friend spiralled into pain. Once that happens, it’s much harder to bring them back. It’s more sensible to have regular doses and keep ahead of the pain. If it gets a grip, you need much stronger drugs and they come with their own problems.

So when she didn’t get her regular dose, she asked for morphine more often. A spiral that took her to infection, danger and then the surgeon’s accusation.

Not all the medical staff behaved this way. The pain management team who visited made a plan for her. The medical doctor visited again and made a plan. He explicitly said that getting on top of the pain was preferable than giving it on request. But the plan didn’t always get through. Either bad practice, lack of training, staff shortages, carelessness, prejudice and sometimes outright neglect, meant she didn’t get what she needed. And it ended in potential disaster. A disaster she was then blamed for.

She cried when he said that to her. Tears pricked my eyes when she retold it.

We commiserated, shared our fears, swapped phone numbers and my name was finally called after an hour of waiting in that hot, smelly room. For once I was grateful for the delay, grateful to hear her words and share mine.

I shuffled to the treatment room and the tape holding my wounds together was gently removed by the nurse. Even though the clinic was crazy busy, she went slow and carefully inspected each scar. She wiped away the ooze when it appeared, cleaned out my bruised and battered belly button. She redressed the many cuts in my skin and said it all looked fine.

I left the room feeling tender and exhausted. I looked eagerly for my friend in the waiting area but she was already having her own wounds cleaned. I hope the invisible damage to her mind, her confidence and her psyche repair soon too. Damage that could have been avoided, words from her caregiver that she should never have been burdened with.

It was not her fault.

She was not to blame for her pain nor for expressing it.

She should have been heard. She should have been cared for better. She deserved that. We all do.

10 thoughts on “Let’s talk about pain

  1. dorit

    היידי את פשוט מהממת מיןחדת
    התרגשתי לקרוא את דברייך
    אני חשבתי שבאנגליה השירות הרפואי ברמה גבוהה ומקנאה בכם על כך…
    עצוב היה לי לשמוע את כל הדרך הקשה שעברת עם הכאבים.. ולאחר
    נגד הכאב
    כל הסבל הזה התרופות
    ושמאשימים את החולה כשכואב לו??? איזה חוסר רגישות ולדעתי זה מעיד גם על חוסר מקצועיות!!
    כנראה שרופא זה לא הרגיש ולא חווה על בשרו את הכאב ואני לא מאחלת לו שירגיש כאב כזה בחיים !
    אני חוויתי כאב אחרי ניתוח קיסרי כשילדתי את התאומים וגם לפני 6 שנים כשגילו לי גידול שפיר ברחם אז כל כך מבינה לליבך!
    אני מאחלת לך בריאות וחזרה לחייך הרגילים למשפחה לילדה ולבעלך
    נשיקות וחיבוק גדול באהבה

  2. Heidi

    Thanks so much Sharon and Sokari.

    Dorit, I’m so sorry you had that happen to you and it brought such pain. We all have our own experiences with it don’t we. Everyone has a story to tell. Our medical system is good because it’s free but it has its problems. And we should keep talking about it to make it better. But I am so grateful we don’t have the stress of paying for it.

  3. Brenda

    Unbelievable. I’m appalled at the level of incompetence of the staff that let your roommate suffer in pain like that – then to blame HER for the results? That’s just horrific. I am so fortunate that my nursing staff kept on top of things, and that my doctors were very much willing to do what it took to keep things under control. Because of a prior issue, I can’t take loads of NSAIDS, so the plastic surgeon put my on a nerve pain drug instead to help – and that it did. I came home on just alternating Tylenol and Advil, with an oxycodone at night if I needed it. I was fortunate that most everything was numb rather than painful, I guess! I’m hoping that your pain is under control – and that you’re feeling mostly good… xo

  4. Karen

    Thank you for telling this story. I’m so sad for the bad experiences that you and your ward- mates have had, and so grateful for the beautiful heartening experiences you have had, of human nature at its best. I hope your sore body is healing well. Sending you so much love xxxxxxxxxxxxxxxxxxxxxxxxx

  5. Respect, love & strength to you, adam, lilah & everyone you have shared this journey & struggle with. I hold you all close in my heart. I give thanks for the truths you speak to power & celebrate your fierce, tender spirits. Xxx

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