This week in Australia is National Pain Week. The theme for this year is “Nothing about ME without ME- include me in the design of my health care”.
This is a very important part of pain management in my opinion. I have always followed the saying that if you are not willing to help yourself, how can anyone else help you?
It is so important for people with CRPS and other chronic pain conditions (really any medical condition) to be involved in the design and implementation of their treatment plan. Not everyone responds the same way, and there is no one size fits all treatment plan, despite how many doctors will tell you that there is. This is about YOU. This is YOUR life.
I believe that you need to start out with the right people. If you don’t like your doctor, you are allowed to find someone else. The same goes for physiotherapists, occupational therapists and psychologists. You need to be able to trust all of your clinicians. It’s a bit easier when you have access to a persistent pain management service as they are all under one roof. I have been extremely lucky with my doctors, nurses, physiotherapists, occupational therapists and psychologists. It’s because of them, that I have extremely high standards now. They have helped me so much, and I will be forever grateful for my army.
Be vocal. If something isn’t working, or you don’t understand something, speak up. Don’t let anyone dismiss you. If you need something explained 10 times because of brain fog, then so be it. There are no stupid questions. This is your treatment, you have to know and understand what is happening.
Do the homework. A lot of my days are spent doing physio at home. They may seem like they are setting you impossible tasks, but break them down. You have to start somewhere. You can’t just sit back and say that things aren’t working, if you haven’t given them a go.
I may sound like I’m preaching here, but really, you are in charge of your treatment. You need to put in the hard yards as well. Yes it’s going to hurt. Yes it’s going to suck and probably make you feel like you have lost it. But, at the end of the day, it is worth it. A step forward is a step forward no matter how small.
You may have days where you can’t do what you did yesterday, or last week. But keep trying. Don’t give in. Discuss this with your team. Let them know where you are at. Stay involved. Communication is vital for any relationship.
Pain Week I think is also a good opportunity to say thank you to your support people. Not just your clinicians, but also to your family and friends who stick by you. The ones that turn up randomly at your house, just because. The ones who get you out and about even if it’s just for coffee. The ones who send random messages or ring you for no particular reason. The ones who stand by you and want the best for you. The ones who pull you out of the darkness. We don’t mean to forget to say thank you. Life with chronic pain is chaotic. But it’s nice to give a little recognition every now and again.
#CRPS #complexregionalpainsyndrome #mentalhealth #depression #anxiety #breakthestigma #nationalpainweek