Pain has made me unbearable

Without a paddle!

Pain is difficult even short term, so imagine being in pain every hour of every day for years!

I thought I was strong, I keep going and even manage a smile and my sense of humour is still intact, but then a difficult flare up and problems caused by pain meds has changed that but Its okay though because I have support, I have pain management who have told me that they are there at the end of the phone or I can email.

Wrong!

My pain has been particularly difficult lately and I’ve been told that oramorph (oral morphine) is to be used when my regular pain meds aren’t effective, I’m sure that if you spoke to some chronic pain patients they would say that their regular meds aren’t effective anyway but you plod on. I have used a little more oramorph than I usually would recently and it has caused some breathing problems, I cut down a little and just thought that I would bring it up at my next pain management appointment.
I was due to see them last December but pain doesn’t recognise a calendar and so at that time I was in too much pain to make the trip and appointment and so I phoned and left a message and I also emailed the clinic, unfortunately despite this I was discharged. After a complaint to the patient liason team I received a very prompt phonecall, much quicker than if I needed urgent help, it was all “a big mix up” and I was sent an appointment for the 20th March.

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So I have been holding on until my appointment, I’m struggling to cope and so this meet with the consultant was very important, but I should have known better because a letter arrived this morning (4th March) saying “We are sorry to tell you that we have to change the appointment shown above. We have made a new appointment as shown below which we hope is convenient for you”. The appointment is for 1st May!

I myself am surprised at how much this affected me, I have made contact with the receptionist but she just wanted to confirm that it was changed and I explained that one day in pain seems like forever, so this extended wait to get help will seem like a lifetime. I’m fully aware that hospitals are under pressure and I am not attacking the people that look after our health needs, but this is failure.
I’m told by others that should be seen by a team of people consisting of not only pain management but also physiotherapy, orthopaedics, rheumatology, occupational therapy, physiotherapy/rehabilitation and a psychologist but I only see (rarely) pain management.

I’m left today feeling low and unsupported, I never visit A&E when my pain is unbearable to get help, I have been told it is reasonable to do so when all else fails however I firmly believe that the A&E is strictly only to be used for exactly an accident or emergency and its already abused by many.

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However now I’m rethinking that!

Until next time!

8 thoughts on “Without a paddle!”

  1. I’m the same and feel your pain. I’ve been waiting months for an appointment with my pain management team and finally got an appointment through last month for the end of April. This will be my second stint with pain management – a different team to my last as I didn’t feel that a psychologist was all I needed but, they did… It’s so frustrating having to wait so long especially when the pain gets so bad and all you want is just a little something to take the edge off…

      1. That’s what I thought and have been told before – unfortunately they thought that seeing a psychologist was all I needed, even though my pain was forever increasing and muscles constantly deteriorating. Never mind – it’s done now, I just hope to have better joy with my next pain management team. Hopefully anyway because the pain is driving me crazy…

          1. thank you – I hope so too… I know what you mean – we can’t win can we – we want to try and help ourselves but we’re either in too much pain to do so or create more pain. It’s never ending…

          2. And it’s the never ending that I struggle with! A friend is also in a wheelchair but he doesn’t have pain because of a spinal injury, he is very active and I’m envious, the wheelchair doesn’t bother me it’s just the pain.

          3. I’ve said the same myself. I could deal with having a pain-less disability that requires a wheelchair very well – just not the constant, debilitating pain – as you well know it’s soul-destroying, it really is… I also wish there was more awareness around for CRPS and other invisible illnesses too – maybe then there would be more money pouring in for research to help in finding cures and/or much more manageable remedies than there already is…

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