Wednesday 31 December 2014

Communicating with loved ones


I hear and see a lot of pain posts about invisible pain and illness. Often people will say how others don’t understand what they are going through. I was the same. I would paint a happy picture to all those around me. When friends and family asked me how I was doing,  I would say “Yep. I’m fine!” I didn’t want people’s sympathy, so I just fobbed it off and changed the subject quickly. But, over time, I’ve learnt this can be damaging to me in two ways. Firstly, it is just plain hard work to pretend when you are in pain. Secondly, my relationships became strained. My loved ones truly wanted to know how I was doing and if they could help but I shut them out because I thought they just wouldn’t understand.  

I think, especially at this time of year, when we are probably spending a lot of time with our friends and family, I thought I would write a few notes on the importance of communicating when you self manage chronic pain. Here are my top tips:

Tell them. Have some real conversations. If a loved one asks you how you are feeling, it is OK to say “Actually, my pain is bothering me today”.  I often found it hard to describe the pain when I was in it because I think a large proportion of my energy was required to manage the pain.  I didn’t have much strength remaining for a deep and meaningful. But that is not to say you can’t talk about it when you are feeling a bit better. Perhaps it might be easier to describe your pain and its impact on your life on paper, in a short film or poem.  But, whatever your mode of communication, I believe it is important to tell your nearest and dearest what it is like for you. They may not be able to empathise as they haven’t felt that way before but they can try if they know what it is like. If you keep saying you are fine then they never get the chance at understanding what you are truly going through.

Ask for help: My loved ones were often offering help to me. They do this because they care and they don’t want to see me suffering. So I have found that once I learnt what works best for me when in pain, I needed to tell them too. I had my loved ones spend the day with me during the pain management course and we went through, together, the activities and techniques that would form my new bag of tricks when managing pain. I also set up a few new rules. As a self pain manager, I said I would ask THEM for help when I needed it.  I also went through my new pain management strategies because when I was struggling I wanted to be sure they were going to offer me real effective solutions. I didn’t want to be mollycoddled . I didn’t want them to suggest I go have a lie down. Now, they tell me to go for a walk or do some stretches because we all know this is what works for me.

Be prepared: I just think it’s good to have a few pre-prepared comments ready for the common situations you may experience. So if the offer of help/query about how you are feeling is made, be sure to be accurate in the answer and give appropriate direction as to how that person can actually help you. My favourite goes along the lines of “My pain is bothering me, would you mind if you (...do this...) so that I can (...do this...)”. For example, here is a common one for me, I am out at a social function and chatting away happily with someone. But sitting and standing for long periods are often recipes for a flare up. So I might say after a few minutes “Do you mind if we sit and keep talking because my pain is bothering me as I have been standing up for a while now?” Or something along those lines. So I always have a few phrases ready and I make sure they are clear, calmly delivered and, above all else, helpful to me in that exact moment.

Get a tribe behind you. I recently attended a pain management support group social event. There was a lot of comparing treatments, specialists, pain conditions. I sat back and listened and tried to ascertain if this was a beneficial exercise. Sure, it is nice to know others are out there in similar situations. For some, this can help to realise that many of the reactions to pain and how it affects your life are universal. You feel less alone.  But, I was concerned because there was very  little suggestions of alternative solutions, techniques within a person’s control to deal with their pain. Since starting this project, I have connected with a number of like minded individuals who believe in the power of self management. This is a great supportive network to be around. When I am feeling low on motivation or struggling with some aspect of my journey, this tribe builds me up and gets me back on purpose. That, to me, is much more helpful than having a pity party. If you focus on the negative, then maybe that is all you will see?

So, it is New Years Day, have you got a resolution in mind? I saw one thing that I thought really true about living with chronic pain. Focus on the things you CAN do. You can have conversations, you can ask for help and you can be a part of a supportive network. What are you going to do?

Tuesday 2 December 2014

Finding out what is the best movement for me


I loved playing netball. I represented my region and much of my time was taken up with practice or tournaments during my teenage years. I was the one who went in hard, threw myself around, no fear and some would even say, a little bit crazy (as you can see!).  But in early 2000, I was playing mixed netball at a fairly high competitive level. It was excellent fun. I played with my husband and a bunch of good friends. We were all carefree, late twenties and believed we didn’t need to train or stretch or prepare for games. We would fly in at last minute, throw on our uniform then hit the court. After running full tilt for an hour long game, we would then just stop and stand around and chat or go for a drink. My body could not cope. Almost weekly I was in a bad way the following day. Surprisingly, I never felt pain during or straight after the game, but it was always the next day, ouch! I was pretty renowned for saying “Ooh that’s gonna hurt tomorrow!”

One day after a particularly bad flare up, my husband politely suggested maybe it’s time to stop. He was brave enough to even suggest that netball just wasn’t good for me long term. Maybe it was partially the way I played (speed: go or stop) but also I just wasn’t coping with the pain that resulted. So I stopped playing. It nearly killed me because I still went and watched. It was hard because from the sidelines you always firmly believe you could surely have done that better, made that intercept. But I sadly said goodbye to the game I loved.

So, I worked out that netball was no longer the sport for me. I know now that I am better off doing something I enjoy that is not quite so rigorous (dangerous!) and something that strengthens my body in a functional way (yoga, walking, etc.).

Recently I have been giving CrossFit a trial. I love the energy and the people were all very friendly.  It is functional movements with lots of squats and chin ups and using weights to power up the legs and arms while focusing on core stability. The sessions are a lot of fun. But I was pulling up very sore and stiff. I was constantly explaining to the coaches that my approach is to start slow and build up. And I know this because I have figured out this works for me after the past 6 years of self managing my pain. But that is not really the philosophy I found behind CrossFit. They want you to go hard and push beyond your limits and try to go heavier and faster and…well I am just not sure about it.

So I am quite torn now. I cannot decide if I am going to keep it up or not. I feel a bit like a failure if I stop going (hence the reminiscing about giving up my beloved netball) but at the same time I am a big advocate for listening to your body. I have limitations and I need to be aware of them and not push beyond these limits. So it has got me thinking maybe I would be better off using function movement techniques myself in the outdoors, with the kids, in relaxed settings. There are so many opportunities for exercise in my day-to-day living. For example, yesterday I helped my husband in the garden and I was transporting some compost to him in a small bucket (~10kg). Anyway after about 5 loads I was exhausted but happy. I realized that this was exercise (and a darn good version of it). I was combining a job that needed to be done with functional movement that would help me to become stronger and fitter. I realized as I was carting these buckets that I can do a similar thing to the functional movements within CrossFit while getting some necessary tasks done. No need to stress about finding time to go to a class, no need to stress that I haven’t had time to help in the garden, no need to stress about getting the kids minded so I can exercise. I can do everything if I am clever and I plan my days to include exercise opportunities. I often do a walk everyday around my neighbourhood. It’s pretty hilly where I live. So I made a decision to walk in a different way to increase my endurance and strength. Every time I hit the bottom of a hill I turned around and power walked back up for 10 seconds. This is a perfect example of finding some strength training in a simple daily task. And next time I take the kinds to the park…watch out! I will be on those monkey bars attempting a chin up and doing my squats while they play. All sorted!

So, I would love your feedback…Stick with the tough training or find opportunities for functional movement?…How do you find the best movement for you? What is the best approach for long term adherence to exercise? Does it really matter if you chop and change your routine? Can you just try new sports or activities and not continue with them. Isn’t it just great to be out there and be doing something? Let me know what you think??!
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