2015 was the start of the 13th year since my car accident and without doubt the hardest on me physically, emotionally and mentally. Late 2014 I had a flare up of pain and a setback that resulted in increased pain in my thoracic region where I have irreparable nerve damage coupled with further corrosion/erosion of my lumbar spine. I have damage in my neck and shoulders along with damage in the nerves leading to my hands and feet. My latest MRI’s showed I have discs collapsing and rubbing, and swelling around vertebrae. They confirmed that the damage meant any further attempts at injections and day surgery were futile and that if I wanted to make progress with controlling my pain I really needed to revisit the pain clinic. My consultant and specialist team have been honest with me over the years (which is more than I have been with them until the last couple of years hiding the extent of my pain for fear of what it would mean) and have said that without new advancements being discovered there is very little chance of any significant improvement and my best course of action is to take a multidisciplinary approach to controlling my pain as best as I can, whilst still maintaining some resemblance of a life. I have blogged previously about the 10 week pain management course I attended and the benefits I gained from this so I thought it was about time I shared some of the pearls of wisdom I have learnt on this journey. This last year I have really understood the importance of opening your mind and trying new things. There are limitations to life but that doesn’t mean that you cannot have some sort of life. Once again in no particular order
- Levels of chronic pain do shift and change over time, this can be minute by minute, hour by hour or days by bay . Some days are better than others, and the worst days do not always stay the worst days. It is important to keep a diary or reflective journal to try and understand what has caused a flare up.
- Each persons pain management jigsaw is very different with the various areas differing in size and importance. Trial and error will help you to determine the size and shape of yours.
- Lots of small coping skills from the jigsaw can add up to significant pain management. Don’t overlook “little” things and suggestions from other spoonies to help you manage life better.
- Retiring from work is not the end of the world, yes it will take adjusting too and if you are anything like me talking to a psychologist will help you come to terms with this but it can open up a world of opportunities and there are many volunteer groups who would love a couple of hours of your time when you feel up to it.
- Get ready to mourn the old you (I have blogged about this previously)
- Do not let your pain consume you like the darkside of the force (had to get a Star Wars reference in), if you do you will end up blaming your pain for everything negative in your life.
- It is no good trying to live the life you once had and wish you still had, life is so much better when you start to accept and live the life you do have.
- If you can master it pacing makes life slower, but so much better and bizarrely enough helps me to achieve more.
- Use all mobility aids that make a difference to you.
- The internet is great for all your shopping needs, and if you are anything like me you are home most of the time to receive them, just let your sorting office and delivery companies know it takes you a little while to get to the door.
- Use your spoons on the things that matter.
- Instead of saying “Sorry” for your pain and everything you cannot do, say “Thank you” for the help people give you.
- It’s OK, actually sometimes it’s better, to clean the kitchen tomorrow – your real famiends overlook mess when they come to see you and if like mine will offer to tidy for you, do not feel too proud to say yes when you need help, or no if you want to do it yourself.
- Set yourself small daily goals to ensure your day still maintains some meaning and structure.
- Set emergency care plans for when you have flare ups
- Do not be afraid to seek help in the UK I have contact and help from my Pain Management Centre, GP, the community Health teams (OT & Physio), Adult Social Services, Equal Lives, Motability and pretty much anyone else who is suggested to me.
- Find an outlet for your frustrations (this blog has been great)
- Look for support groups in your area, I have found NACP and they have been a massive help to me.
- Be honest with your famiends about your pain, your moods and your medications.
- Chronic pain changes your life, but it doesn’t have to run or ruin it.
This post was inspired by Life in Slow Motion’s blog (you can read it here)
Now don’t for one second believe I have all the answers, or that I follow all of the advice above – I mean I am great at talking about and giving advice, not so good at following my own, but even if you can adapt some of this into your own jigsaws hopefully it will help you manage your pain better.
Merry Christmas and a happy new year to all my family, friends and readers