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It’s your patient duty

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I’m guessing this isn’t going to be my most popular post.

I know it won’t be because I view my website and the social media stats and both indicate whenever I blog a ‘to do’ or a ‘too hard’ kind of blog you all seem to drop off.

I completely understand.

However, I want to make a point about the duty that patients have toward themselves and toward their pain teams. That’s the duty that began the moment you got yourself up and to your first appointment (remember that one a long, long time ago?).

You were the one that made the first move and you were the one who began your pain management. You informed your Health Care Practitioner (HCP) that you had a problem.

Now, step and repeat.

It’s the last thing we all want to hear when trying to manage a life with chronic pain, but the longer I live a life with chronic pain, the more I realise I’m going to get the best results admitting that I’m driving.

I can hear you all:

But you’re lucky, you have Theo

Theo got you to the first appointment… and the rest

Theo helps you every day, how can you say that?

Theo does help me, mammoth amounts in fact but I have been directing that help – even when I didn’t know it and throughout my worst years when every second was difficult and there was no hope in sight. I told Theo we had to get to a doctor, I researched the treatments suggested, I planned the next appointments. I was directing.

I googled. I read. I sifted. I battled. We’re winning.

I’ve been directing the help I need from Theo and equally important, the help I don’t need from Theo.

Pain management is predominately your duty.

Need help directing?

Realisation and clear communication is key. Lucky for me, communication was my day job! And I had great practice having to communicate with just pictures at times – creating logos, concepts for layouts, ideas for events. I had to break down loads of information, I did that for decades (only just ‘decades’ plural at 20 years might I point out).

My experience with clear communication (necessary to describe pain in this case) and the effects of that (gaining success with managing chronic pain), paired with the frustration of not being able to achieve that during my pain journey, turned into a self assigned brief.

I was driven to try and establish an effective chronic pain tool, and I did that, and I called it {Pain}Train.

It works! Try it free for one month. Go on – knock your next practitioner’s socks off! Direct them.

I’m not fed up with the following anymore:

  • receiving blank stares at my appointments
  • repeating myself endlessly – too traumatic
  • feeling there was alot of wasted time during appointments and being disappointed I didn’t communicate the right info
  • being in pain and not being able to speak when I finally got to a long awaited appointment
  • forgetting to communicate the right info
  • forgetting my treatment history
  • being unable to carry x-rays and reports around or flaring myself up by carrying them
  • reading incorrect details on my referrals
  • being left to feel like I wasn’t professional, smart or valid
  • being left to feel like I wasn’t in control of my life
  • being left to feel I had lost all my independence and ability to function on my own
  • trying to find a way to document medication and responses to it
  • losing information and feeling disorganised
  • being left to feel that no matter what report anyone wrote, it still wasn’t communicating my pain experience
  • being left to feel that my pain management team had no understanding of the person I was (and still were) pre pain

I could go on… and on, you’re welcome to type your frustrations below. Or better still – get your frustrations on your own {Pain}Train profile and let your pain team know how you’re feeling before you get to your appointment. Yep, there’s a spot for you to vent, it’s called current stop.

The profile is private and only you can choose who to share or show it too. You can retract the access, and see if the person you wished to see your profile actually looked at it.

Read testimonials here.

That’s my patient duty done – and some of your duty done for you too. Over to you – choo choo!

Feedback

3
  • Joletta

    Soula, as always you speak to the very heart of me, to what I’ve learned and lived, to what I believe. So many patients in pain want someone else to fix them, they feel it is someone else’s job to do so, but there is no fix, there is no one person who can change our experience of pain it has to come from us. It’s hard, it sucks, but it’s possible. It’s about finding the right people and resources to facilitate our healing, growth, and ability to live a full, valued, meaningful life, even when pain is still present. It’s about taking the road less traveled to dig deeper within ourselves to understand ourselves and our pain more thoroughly so that we are more prepared to change our experience of it and our relationship. It’s hard, it sucks, but it’s possible. And thought that road is rough and often painful, the rewards are great, there’s a life to be found along the way.

    I’m so grateful for having you in my life. And I hope others take you up on your offer of using the {Pain}Train. No one has all of the answers for us, we have to do this for ourselves.

    Love and hugs my beautiful friend!

    • soula

      I’ve been lying in bed thinking about the horrid nature of the post Joletta – who wants to hear ‘it’s your job’? I’m so grateful to have you in my life also. You provide the reassurance that i’m not mad (or mean!) and also strengthen me on the daily push through chronic pain.
      I’m writing this reply as our 3 month old gallery doors open and my work day begins in my new home town – far, far away and so completely different to my previous life of 17 years. I’m sore, it hurts but each day I believe I bury pain just a little smidgen more and live life alot more.

      Love and hugs right back to you sister! x

      • Joletta

        My heart is so happy to hear of your work day and the gallery and this new chapter of your life. So many good things. We’ve both come a long way!

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Definitions of pain

What is Pudendal Neuralgia (PN)?
Most simply put PN is Carpal Tunnel in the pelvis/buttocks. Compression of the Pudendal Nerve occurs after trauma to the pelvis and is aggravated with pressure. The pain is often described as a toothache like pain, with spasms, sensations of tingling, numbness, or burning. It can be very debilitating.

What is Neuropathic pain?
Neuropathic pain is the result of an injury or malfunction in the peripheral or central nervous system. The pain is often triggered by an injury, but this injury may or may not involve actual damage to the nervous system. More…

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