I had my first appointment today with the Pain Management Clinic at the hospital (GP referral). I had absolutely no idea what to expect, and was a little trepidatious to say the least.
The letter they sent me gave no clue, just a time for the appointment for an initial information session and a quite long questionnaire. I have to say for someone with RA pain in both hands having to hand write anything is difficult, so I did it over a couple of days, slightly cursing the fact they hadn’t emailed it to me, typing or using my touch screen keypad is much less painful.
The questions asked were quite in depth, covering the reasons for the pain, what it stops you doing, the changes it’s made to your daily life and activities, etc, plus any current medications and whether they worked. So like a good patient I ploughed my way through and answered honestly, no point doing otherwise!
I almost went in today with my defensive head on, expecting to have to justify my pain levels and the way I measure them, or why I am taking the pain medication that I do (Tramadol & Oramorph). I had assumed it would be a group session (you know what assume does!) so was suprised to be called promptly at 11am into a small office.
The lady introduced herself as a hospital psychologist, and went on to explain they operate both a 121 and a group support to chronic pain patients, backed by a team including therapists, physiotherapists, occupational therapists and a nurse covering medication. The service offers support with self management of pain, which I immediately found myself buying into, I am a great believer that as patients we have a responsibility to treat ourselves as kindly and as well as we can, in consultation with medical professionals, and I’m certainly very open to learning how to do that better.
We talked through my responses to the questionnaire in full, about how my recent diagnosis and symptoms, have affected my life both physically and mentally. It was a tough conversation in some ways, as well as my physical ability being hugely affected to the extent I am disabled, there is the daily pain that never stops, the loss of income and my home, and my current status as a homeless person, all of which have brought about very natural feelings of frustration, anger, failure and at times the classic, “why me?”.
But, on the plus side she was wonderfully understanding, drawing out how I deal with this on a day to day basis and telling me I was actually using some good coping strategies already, I hadn’t realised I was even doing that so that was great to hear. I explained to her that one of my biggest frustrations is not being able to “manage” my illness. Anyone who’s ever worked with me will confirm I am a classic manager, I tackle issues, look for solutions, I trouble shoot, I strategise! It’s how my head works. Identify problem, identify solution, make it happen – simple 🙂
That’s when she hooked me – she explained all of these tools can be used to help me manage my pain and try and find a new ‘normal’ that will work for me. Music to my ears!
She fetched me a Pain Management Plan workbook to take away, I deliberately haven’t read it yet, I’ll do that tomorrow, but at a glance it’s covering other people’s experience with chronic pain, tools and techniques for managing pain, and space for filling out my own plans to work on moving forwards.
I’ve decided for now to have a couple more sessions with her 121, then access the group therapy later. She also feels some mindfulness training will suit me, having done a little before I agree and am actually looking forward to that too.
All in all this appointment was amazingly positive for me, for the first time someone has convinced me I can start getting some control back over this illness, and that’s incredibly hopeful.
I realise this approach and this kind of support may not be for everyone, I’m detail orientated and I like the idea of looking at the way I do things around my disability and finding alternative and possibly better ways of coping. I’m a firm believer in holistic medicine, the mind and the body are not separate entities, and I’m well aware that whilst I cannot remove the pain, changing the way I think about it can and will enable me to manage better day to day.
So, the start of a new path, a slow one and a long one. A fellow RA sufferer said to me online very shortly after my diagnosis “this is a marathon not a sprint, you have to settle in for the long haul”, and they are absolutely right. There is no cure, there is no quick fix, but I’ve been fortunate to be given this NHS provided opportunity to learn techniques and strategies for living as well as I can, and I intend to grab it with both hands.