Tomorrow I have a phone appointment with the pain clinic. I’ve been under their care for a few years since I began experiencing chronic pain probably caused by the long-term impact of my tics, and being a wheelchair user.

I haven’t had an appointment in quite a while because my pain is generally manageable thanks to a mix of medications and other approaches. From my perspective this hasn’t changed, but the pharmacist associated with my GP has asked for a review because she’s concerned about the combination of meds I take. My anxiety around all this is increased by the new NHS guidelines on managing chronic pain that I’ve written about previously.

I’m nervousness about the pain clinic appointment tomorrow. I know that I don’t always advocate for myself well when it comes to health professionals and I’ve no idea how it will feel to have this consultation on the phone. To help me prepare I’ve made a series of lists to help me communicate the current situation and my views about it to the doctor. I’m sharing this below in case it’s useful to other people.

Tools I Use To Manage Pain (Roughly In Order of Frequency)

• Regular pain medications taken every day
• Heat, via heat packs and baths
• Pacing my activities and my day – regular rests and breaks from my chair
• Regular hydrotherapy and swimming sessions
• Occasional pain medications taken when a pain spike is particularly intense
• Mindfulness and CBT approaches
• Drawing my pain
• Postural support in my wheelchair
• Medicated patches

These Tools Make It Possible For Me To

• Work full time
• Hold a Wellcome Trust Engagement Fellowship
• Do the activities I love
• Provide childcare for my niece
• Exercise regularly
• Spend time with my family and friends

The Pandemic Has Meant That

• I’ve been unable to swim for over a year, which has increased my pain
• My PAs have been managing my repeat prescriptions to help conserve my energy
• Because of concerns about the supply of medications, my PAs have been re-ordering all my main medications each time, not just what’s running low, in order to build up a small surplus. This has now been changed.

My View

• Pain is present every day but is currently relatively stable
• My current pain management plan is broad and effective
• Having a medication I can take in an emergency if no other approaches are helping is important to me
• I take pain medication as prescribed but I’m willing to try different dosages
• On the rare occasion when my pain medication has been unavailable, I have experienced immediate changes in pain levels and in what I’m able do as a result
• Sleep is currently OK – pain has some impact, but it’s generally manageable with the current plan

I feel much better having done this prep for the appointment. I’ll let you know how it goes.