Living with chronic pain, I know that my friend circle has gotten smaller and the friends I have don’t necessarily “Get It” but they are supportive.  I wish I’d known that there were other people out there who do just “Get It” and that I wouldn’t have to explain myself all the time. I know now that “It’s ok to not be ok”.

The main source of help originally came from the Pain Clinic within Fife Pain Management Service and everything I was taught there. The physiotherapist at the Pain Clinic provided lots of information and support but this is a time limited resource and people can’t attend there for long periods as they need to move on and make space for new people to come in.  

When I was no longer attending the Pain Clinic, I moved on to Pain Association Scotland and I still attend meetings and feel that I continue to learn from them. Pain Association Scotland is a continuation and follow on offering significant support to utilise tools, strategies and coping mechanisms that help me live with pain.  At the meetings I continue to receive and share tips and different techniques with other people who attend.

Adopting alternatives to pain medication has made a massive difference to me.  I still have to use medication but with advice from the Pain Clinic, Pain Association Scotland and Occupational Therapy I have found ways to cope.  Using medication alongside these supports has been key for me.  It’s not just about pacing etc but also about accepting that the aids I have are there to help me remain as independent as I can, even although this was difficult to adjust to when I first started to need walking aids in particular.

Sometimes doing things can cause a flare up and initially I didn’t have the tools to manage this so I relied on my parents to do things when my husband was at work.  When I began using alternatives to medication, I became more independent.  I can do things like get on a train with my son and go to visit friends.  

I used a variety of resources to help manage my pain including meditation/breathing apps and sleep stories as well as other useful online resources. There are some great relaxation apps. 

Find apps like these under our Useful information section 

Pacing  is a massive thing and learning to pace myself was really important.  Learning to pace meant that I could increase my activity level without triggering my fatigue too much. It took a long time to understand the importance of maintaining an even level of activity throughout the day instead of doing as much as possible in the morning and then resting all afternoon.
 
It was important to understand that things that needed to be done could be done in small chunks rather than all at once and taking frequent short breaks helped in being able to complete a task.
 
I learned the hard way to not be tempted to try to do more on a ‘good day’ as this inevitably led to bad flare ups.  I had to try to find a new way of doing something with pacing rather than stopping it altogether, but at the same time being realistic and accepting that there are things that I just cannot do anymore. For me, it’s more about meditation and breathing and relaxation techniques that help me to cope. I’ve learnt that I need to think about planning and be realistic as there are times when life gets in the way and I need to have a flare up plan.   A flare up plan is huge for me and it includes things like heated products, support pillows and cushions and a weighted blanket.

It was and still is crucial to not compare myself to others or what I think I ought to be able to do, also trying to be positive about what I can do rather than what I cannot do. 

Learning to accept what has happened is really important.  It doesn’t mean I have to like it but acceptance can help massively in getting on with the life I have now.   For me it’s being the best mum I can be for my son even although I’m not the mum I wanted to be or thought I would be and it takes time to accept that.  

I want to keep raising awareness about living with pain where and when I can. At the moment this comes from being part of the Pain Medicine Programme and this is important to me.  Invisible disabilities are hard to live with and often there is no obvious cause which makes it hard for others to understand.

I feel strongly that people need more than medication to manage pain and feel that Pain Association Scotland can provide a lot of support, particularly for those who don’t attend the Pain Clinic or when people are discharged from there.  If the NHS worked closely with PAS then I feel that more people could receive the support they need and this would improve the quality of life for those living with pain conditions.   

A quote was shared at the end of Year 1 event which really resonated with me: “Pain doesn’t kill you but it takes your life away”. I very much feel that and dealing with the loss of the life I had has been like grief.