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?

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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How I got rid of my psoriasis without drugs or potions!

I have had a very bad flare up of scalp psoriasis since about February this year. Having never had it before I found the condition to be quite debilitating. I felt horrible with such flaky skin and I was constantly wearing a hat to hide the dandruff-like appearance of my hair. It was my second flare (last November was the first one) but this time I was decided to take a difference approach. The first time I followed the dogma and went to my GP who sent me to a dermatologist, who prescribed cortisone creams and other drugs and it went away...for a while.  



This time I did a bit of my own research. I had never been diagnosed with eczema or psoriasis before. I really wanted to know how and why it would just appear. So I read up about the gut brain connection and auto immune disorders. I decided I was going to trial following the Auto Immune protocol. What is that? It is a way of cutting out all possible inflammatory food products from your diet then slowly re-introducing them. It’s better to read up on it from the experts such as The Paleo Mom, Mickey Trescott or (a similar approach) the Wahls Protocol. A basic summary is that auto immune diseases are linked to a leaky gut. This just means you have holes in your digestive system causing things to leak out and this can cause inflammation. But you are better off reading the real science behind it from these experts. (I’ve just listened to a great interview with Dr Sarah Ballantyne, The Paleo Mom, on one of my (many) favourite podcasts – if that is more your thing!)

So, I stopped eating grains, dairy, nuts, seeds, eggs and plants from the nightshade family (tomatoes, potatoes and paprika among others). I just went cold turkey from day 1 although I was already near 100% gluten free and had trialled dairy free in the past. It also means no processed food, artificial colours, flavours, chemicals. It is pretty hard work because everything you eat needs to be made from scratch but its REAL food.



The protocols and recommendations all say that you need to exclude everything to give your gut the chance to heal and repair (plug up those leaky holes!) I worked out within the first few days there were three main things I was going to struggle with. Coffee, alcohol and chocolate. Yes, I know, it’s not very good. But I was subscribing a little to the theory that I shouldn’t be too hard on myself and I was also doing this protocol at the same time as I was starting my first pain management course so I didn’t want to put myself under too much stress and pressure! I thought that surely a small compromise could be made if I didn’t appear to have any adverse symptoms by keeping it in my diet and also by allowing myself a small “cheat”/”reward” maybe I was going to be more likely to stick to the rest of the exclusions. So, sadly, I did continue to have a daily coffee – predominantly with soy. And I did eat a bit of dark chocolate...and some days, I struggle around dinner time with dealing with pain and tiredness and...well, I just like a glass of wine.  But let me make it clear this is NOT the recommendation, it was how I dealt with it at the time.

Some other things may have creeped in there inadvertently as I progressed. Eating out was a problem (near impossible) and so I would just to go with the flow sometimes resulting in being a little slack on following the protocol. But mostly I did eat at home, made everything myself and was pretty good (I thought) at sticking with it.



I'm afraid I don't have a before picture -
but trust me you wouldn't have wanted to see it!
But here is me checking my scalp and
enjoying my healthy, shiny (flake-free) locks!

Now for the good news...I have been following the above approach for over 8 weeks now and I am feeling really energised and happy. I am not craving sugary foods or even really missing the foods I am not supposed to eat. I am just enjoying the lovely fresh healthy nutrient dense foods I can eat.  I have slowly started to re-introduce foods and don’t seem to be having much reaction to eggs, nuts or seeds and am being a bit more open with the alternative grains but being consistent with wheat/dairy free and sticking to a nutrient-dense wholefoods approach.  

And as for the psoriasis, my skin is alot less dry, it is even become more supple (I am also daily applying coconut oil to my skin). My scalp isn’t flaking away and my hair is looking healthy so I believe it is going, going, gone!? So for those of you out there with an auto immune disease, maybe do a little research and give something a try, what’s holding you back...? The results could be amazing! I am expecting (hoping) to receive a barrage of questions now so please, fire away....

“Let food be thy medicine and medicine be thy food.” ― Hippocrates

Attack of the munchies

After doing the #sugarfreeseptember challenge (no refined sugar for 30 days) a friend asked for a few kid friendly healthy snacks. Although I suspect that his enquiry might be more likely for him to get through those mid morning munchies at the office (am I right, Jay?)

So here are a few ideas but I am saying straight up this important thing I have learned:

You WILL NOT NEED a snack if you have nutrient-dense healthy main meals. Let’s take breakfast. Before I ditched grains from my diet, I was most days having toast or cereal. These breakfasts do have you reaching for a snack by 10.30am. I found that once I switched to green smoothies (or more recently meat and vegetables - predominantly dinner leftovers), I rarely even thought about a snack until well past 12 noon. The dense nutrient rich smoothies with their combination of dark leafy greens and fruit with little boosts of extra fats from seeds or other superfoods are SO super satiating that I recommend a change of breakfast before even worrying about snacks...but still that's a big leap for some people, so I will include a list here of my favourite (mostly kid friendly) snacks that are pretty easy to prepare.

Trail mix: This is a fairly easy one to get you through those energy dips mid morning. I like to make up my own with my favourite combinations of nuts, seeds and dried fruit. But the best cheeky add in to any trail mix is some dark chocolate pieces (and we are talking about the good stuff – 70% cacao or above!) That way you are less likely to spill the entire contents on your desk and hunt down every piece and gobble it up. Dark chocolate has a quick “I’m over it now” point.

Nut balls: These are also super easy to whip up if you have a high powered blender. Essentially these are just a combination of nuts and dates and some flavouring. My favourite recipe is the Changing Habits chocolate nut balls. You can substitute dried apricots for the dates, substitute other nuts and play around with what you roll them in (e.g. coconut, goji berries, cacao, sesame seeds). I have found with my kids, they are a bit more likely to eat them if I reduce the cacao flavour by using half cocoa/half cacao.

Pikelets/Pancakes: My kids love pancakes and this is our Saturday morning ritual. We mostly go for the River Cottage recipe when it has to be floppy pancakes (ones they can roll up with lemon and sugar). We use GF flour with these ones. But I find a good afternoon snack is pikelets that you have with some jam and cream (coconut cream based or dairy). I love this recipe from Elana’s Pantry.

Chocolate bread: Well, to be honest it isn’t even chocolate but it is a dark brown colour and my daughter always refers to it as chocolate bread so I have been hesitant to correct her since she gobbles it up. This is a favourite of mine too because all the ingredients go in blender then you pour it into a baking tray and you’re done. I can do this on a school morning...although the almond butter does mean it is not appropriate if you are in a nut-free school. It works with coconut butter substituted though. Its actually Elana’s pantry paleo breakfast bread but I reckon our name is more fun!

Crudités and dip: I actually don’t know what crudités mean but I read it once and I loved the name. Essentially its just cut up vegies and dip. Carrots. Snow peas. Cucumber. Its really easy to prepare and you could start off with some store bought dips but hummus is super easy to make. Here is a really yummy beetroot hummus and as I have been recently on the AIP diet I have been boosting the organ meats and this is very nice to have as a dip – if pate is your thing! A healthy cracker alternative (grain free) is these plantain crackers (I eat far too many of these at the moment!).

Fruit straps/chips: I got this idea online – search for fruit leathers. My kids are always asking for these and they are pretty easy. It’s basically mushing up some fruit and then laying it out flat on some baking paper and then slow cooking in a low oven for a few hours. It took me a while to get the hang of it because the thickness of the fruit mix is pretty important.

I love to experiment so there are ways to use your normal favourites but make them with a slightly healthier slant. For example:

• Substitute sugar for other sweeteners such as rapadura sugar, dates, honey or home made golden syrup.
• Substitute flour for gluten free flour or another type of non-wheat based flour.
• Substitute butter for coconut oil.

Best of luck and hope that helps!

 

Free Pass

I’ve been feeling crappy. My daughter has been sick and I think I might have caught her bug. But still, I dragged myself out the other day and visited my new chiropractor. I told him I felt sick with a headache, body aches and that my youngest was sick with a bad cold. He said it was the perfect time to visit him! Huh? He is really good at explaining stuff to me. It may be because I am new and I gave him the heads up I was a bit sceptical. I have some serious hardware in my spine so I was nervous and expressed my reservations. But he has been very open and descriptive. He explained to me that when your nervous system is not firing at its optimum, it is hard for your immune system to do what it needs to do (heal!). Your body has an innate capacity to heal itself but for this to happen, the message channels in your central nervous system need to be working properly. Another interesting thing he told me was that your body puts a specific amount of energy into healing. This may cover my day to day aches associated with my chronic back pain. But when inflammation, viruses or other sickness attack, this innate healing needs to be diverted to the “emergency” situation. There is no leftover energy for masking any ongoing pain. So it made sense that I had a bug and I had a pain flare at the same time. I really wanted to just check out and give my body the time to heal itself. I needed to rest. It reminded me of something....

When my daughter was younger we were often trialling new bedtime routines (Ummm, she is nearly 7 and we still haven’t found one that works!). She has always been a night owl and never seems tired when it is bedtime. So for a while there, we would read her a story, do the teeth, toilet and all that stuff, tuck her in and say goodnight...then we gave her this strict rule. If there was some very necessary (borderline emergency) reason then she could come out and talk to us. We called this a free pass. Then she was supposed to stay in her bedroom after that and go to sleep. Anyway, it worked for a while....

So it comes back to how I was feeling yesterday, in pain and on verge of tears. This situation could have become worse if I had have let my thoughts get out of control, continue with blame and guilt and feeling bad about myself. But I took myself out for a walk and cleared my head. On my walk, I recalled the “free pass” rule. There will be days when I don’t feel crash hot. That’s true for everyone whether you have chronic pain or not. So I decided it would be OK to allow myself a free pass every now and then. I needed to just breathe, ditch the stress, give in to the need to re-charge. So, I gave myself a free pass. I had a PJ day, complete with nana nap and movie!

Obviously free passes are for borderline emergency purposes....so not to be used too often. My body was telling me something and I had to listen. I also acknowledged that after this “free pass” I need to still be committed to returning to my self pain management routines….but that’s tomorrow.  

 

 

 

When I compare I despair...

I remember when I was in school we would need to line up from tallest to smallest in preparation for school photos. This was so we could march out to the photo area and be arranged in a perfect way, tallies at the back, shorties in the front. I was always towards the end of the line and I often competed with one of my best friends. She was very annoyed when I “grew” 3cm after my back surgery and I became one of the tallest. As kids, we would compare ourselves in this way and it was pretty easy. It was even nice to get that quick visual idea of where everyone was at in that moment in time. There was no judging involved it was just a fact. I’m taller than you are.

As an adult, I have realised when I compare myself to others, it can lead to feelings of despair. Here is how... Lately, I have been reading and listening to podcasts from famous entrepreneurs or about building a business or following very successful bloggers/health advocates. It has been inspiring and I have gleamed a number of red hot ideas worth pursuing. But then I get into compare mode...she has so many more followers than me, that website looks so great, that persons sells an amazing volume of products. And in the process of this comparing, self doubt and negative self talk will creep in. I could never do that, where do they find the time to do that, I’m not smart enough, confident enough...and this comparing is not helpful. These people I am comparing myself to, they haven’t just landed in their success overnight. It’s been hard work and a journey. I am just starting my journey so I need to just focus on the small (and achievable) steps. It’s worth remembering too that we always put the best bits of ourselves forward in social situations or on social media. People often reserve their struggles and vulnerability for behind closed doors. So a comparison might only even be to the best version of someone else, not a true representation (think the “air-brushed” beauty versus the face in the mirror first thing in the morning!). Again, not helpful and not realistic. What I need to do is be mindful of these thoughts and the most important thing for me to acknowledge right now is that everyone is at a difference place in their respective wellness or business journeys.

And I even realised that often I compare myself to myself. If I am feeling low, unmotivated, sick or in pain I will often compare my activity levels, enthusiasm or mood to periods when I was feeling great. Or it might even be that I will compare myself at this moment with the “me” I would like to be (we all have that dream version of ourselves that never puts a foot wrong and is always a picture of perfection...don’t we?). This comparison also brings despair. I am not as motivated as I was last week; I am not as mentally clear as I was yesterday. There is an important lesson from Buddhism that I need to recall in these moments, impermanence. Not to hold on to an image or a comparative version of myself, let it go. She is long gone. I am changing in each moment.

So, comparing as a benchmark for setting goals and aspirations is helpful. Comparing to bring myself down and beat myself up is not. I am going to make a commitment to ditch comparison. Are you with me?  I will not compare myself to others because we are all different. We each have our own unique array of skills, challenges, backgrounds and support structures. I want to be happy with who I am and what I have achieved. I want to celebrate the successes of others and support those facing challenges. But I want to do this without comparing to my own situation. I will also stop comparing myself with myself. I am me at this point in time. Right now, in this moment, I might be sick or I might be feeling awesome and that is ok.

How do you compare? Is it helpful?

Photo credits to my 6 year old...not bad!

When fun turns to not fun (pain)

A big challenge when you self manage chronic pain is knowing when to stop having fun! Imagine, you are really enjoying some task and getting into it. Bang! Before you realise, you are sore and tired and need to rest. Sound familiar? When fun turns to not fun (pain) you have overdone it. This may result in a pain flare up. If we can recognise when to stop with greater accuracy we can prevent flare up frequency.

As you may know I have been involved in #sugarfreeseptember. It’s a challenge to give up refined sugar for the entire month and involves posting a picture for each day based on a theme. Yesterday’s theme was fun. I was having a lot of it. So much fun, I forgot to take a photo. There was plenty of opportunity too. We had a very casual Sunday at home with the kids, in the garden, preparing garden beds, we went for a walk to the shops, the sun was shining. I cooked some delicious meals (pancakes for breakfast and chicken bone both with vegetables for lunch). I even made some chocolate nut balls for the sugarfree afternoon treat. But when dinner time came around, I was pooped. My pain had increased, I was starting to feel a little nauseated and I wanted to go to bed. Problem was I had two very wide awake kids, a mess in the kitchen and no dinner prepared. I think I got lost between fun and not fun.

How to know when to stop? I am (obviously) still grappling with this one. But here are a few hints and tips:

Timed tasks: Do you know how long this task will take? Before starting, I need to assess how long it will take to set up, complete and pack up a certain job. I also need to have an understanding of how much I have left in the tank. This would involve an assessment of how much I have already done in a day.  If I believe I can do it then I need to get the timer, pace out the activity with some short breaks (whatever I have deemed my “activity” timing to be) and stop when it’s done (and that does include time taken to tidy up or put tools/things away). If I forget this important step then I am likely to complete the task but with a mess left behind. This is the bit I always seem to forget but it can cause trouble for me because it will result in loading up extra emotions (guilt, inadequacy), requiring help or feeling of overwhelm. A timer (small kitchen timer or your smart phone) can be the best device for ensuing you complete a task, start to finish, with breaks and without overdoing it. Another thing I have realised, if my tasks does involve the kids, they need to be warned in advance the timing of the task. My kids often have more energy than me and they might be fine to kick the footy for hours on end but I can offer them only the time I have determined is suitable for ensuring I don’t cause a flare up.

Reality check questions: Here are a few reminder questions I can ask myself to ensure I am fully prepared to undertake or continue a task at any point in time. Does this really need to be done right now? This is not meant to be a question to fool yourself out of completing a task you do not like (no cheating!). I will often choose to do activities that I enjoy despite the fact that I probably don’t have the energy left to complete them to a good standard (i.e. finishing without the mess part). I am particularly susceptible in the kitchen. I will choose to start baking when I really don’t have the time or effort to complete it but I choose to because I want to eat that particular food or have a healthy option available for my family. Does this task align with my goals? This can be good for determining where my priorities are and how a given task might affect them. By choosing a task that may flare my pain I need to be aware of the impact it may have on my family (reduced time spent with them, requiring their help to clean my mess).

Communicate: Sometimes the difference between fun and not fun is a short break. Maybe you need to go do some stretches or have a quick sit down. If you are having fun with others (your family, in social situations, even in the workplace), don’t be afraid to communicate your needs in that moment. “Do you mind if we sit down to keep talking?” or “Can we come back to this in five minutes I just need to do some stretches”. This might be all it needs to prevent slipping beyond fun.

It’s OK to say no: If you have done a timing assessment and asked a few reality checks and you are not sure you can manage a task, don’t start. Perhaps it is better to put off than get started and realise you have overdone it. There is a very delicate balance between activity based goals (that is, saying you are going to complete an activity regardless of pain) and not overdoing it (completing a task at the risk of flaring pain). It’s a fine line and it differs from day to day. The only way you can get better at knowing when to stop is to be more aware and undertake tasks mindfully. And, I believe, the most important part of any job is a mindful beginning, deciding whether or not you should even start.

Acceptance: Again, I am always going to have to come back to this. Sometimes I just make really bad choices, I haven’t done the timing or the reality checks and I have pushed beyond fun. It is important I accept and act in these situations. Apologise if I need to. “I’m sorry I made a bad choice”. This is OK to say some of the time. I am getting better at this and it does not happen as frequently as it used to. I need to make stronger choices once I have realised my mistake but without layering on the additional emotional pain and judgement. That will only make the situation worse.

So, when you are having fun what do you do to ensure it doesn’t slide into “not fun”?

Setting the tone

Spring is almost here...A spring clean of the mind happened for me today. So, for myself and for my followers, I have set the tone of what my blog is all about...do you wanna know?

I set up this blog and Take hold of pain on Facebook to share my wellness journey and provide relevant information about self managing chronic pain. My hope is that it might motivate and inspire people to kick-start their own journey especially with self managing chronic pain. I believe there is such strength in positive wellness stories for those who are in the right space to take them on board...are you ready? So, I want to outline the tone for my blog posts and for the FB community I am building.

I will not be hosting a pity party. This might sound harsh but I know from experience there is no value in rehashing problems and focusing on the challenges and problems a life of chronic pain presents. If you want to win the “I’ve got more pain than you have” competition, this might not be the site for you. Wouldn’t it be better to hear about evidence-based solutions, inspirational stories and techniques that can be implemented to turn down the pain dial? I will be talking about what works for me and how I am dealing with things within my control. I will post about how I cope with my chronic pain, why and how I move to increase strength and flexibility, why and how I use mindfulness and a strong mindset towards my pain, and why and how I fuel myself with fresh wholefoods. It’s about my journey but I hope that others will share their journey too about ways they take hold of their own pain.

Be very clear, I am not perfect (darn it!).  I want this blog to make people aware of my struggles but I want to do it in a way that shows people the reality of living with chronic pain and the importance of self management. I didn’t want to wait until I totally had my pain under control because I acknowledge that is very unlikely to ever happen. So I’m not waiting... I am happy to be honest and share how I am going...on good days, on bad days and all that goes in between. Join me for the ride.

And to finish, here’s another thing I realised this week. I was beating myself up about not being consistent with my posts. Then I realised this project needs to fit in with my life priorities. My main focus at this moment is my health and wellbeing and taking care of my family. I need to prioritise my pain management routine and concentrate on those lifestyle factors that I know are the supporting pillars in my journey (mindset, movement and healthy eating). This all takes time. I also have a young daughter who is still at home with me and an older one at school. I need to fit this project into the small pockets of time I have. So, the tone of this blog is going to be fairly relaxed and a bit haphazard initially. I don’t want to put pressure on myself because I have a lot going on in my life right now and these prioritise need to come first. I hope that’s ok by people. I wouldn’t be setting a very good example if I busted my gut to get a blog post up for you to read but caused myself a major flare up now would I? So I may come and go but be assured I want to be here for my followers. Don’t be afraid to email me or comment because that will get my attention and I want to hear how other people are going. I want to start a conversation.

So that all said, this site focuses on chronic pain management solutions. And they need to come from within because I have found, with regards to managing my chronic pain, if you’re searching for a cure, you need to just take a look in the mirror.

Managing flare ups

While I have been self managing my chronic back pain now for over 6 years, I still get flare ups. I was never under the disillusion that my pain would go away. So now when pain looms, I use my flare up management strategies. I know just what to do.

Even though it can be worthwhile to reflect on the reason (i.e. Did I over do it? Have I been neglecting my daily stretches? Did I stand or sit for too long without moving?) I am less focused on trying to figure out the cause of increased pain. I find it’s more important to launch into action.

So here is my step by step approach to managing a flare up:

Accept. Often my flare ups are still caused by overdoing it! Yes, I know all about pacing, taking breaks and have a good understanding of my own limitations but sometimes I still push through and over do it. But rather than beat myself up with guilt and blame and anger…I just stop, nourish, repair, move on. I also am much more willing to accept and just acknowledge that sometimes it is OK to have a bad day (I give myself a free pass - more on this soon). Also by simply accepting the pain, I am less likely to buy into negative, unhelpful thoughts which could develop into a snowball.

Plan. I need to make sure I communicate and get help if I need it. I know my bad flare ups last maximum of a day or two. I can deal with that. Two days is not a lifetime.While this may cause a problem if I have commitments/events, I just accept that my plans may need to be re-scheduled, re-organised or prioritised.   I will work simply from a daily plan worksheet, breaking my day into small manageable chunks with lots of breaks and only the necessary jobs (of which, walking, stretches and exercises get top billing!).

Act.  I have a list of activities I can do that I know will turn down my pain dial. I choose one of these and act. I don’t rest anymore or ruminate or wallow in my pain (that gets you nowhere or backwards - fast!). Your loved ones will soon recognize flare ups coming on too and if you share your flare up action plan with them, they can help. My daughter has told me I needed to do some stretches when I told her my back was sore. My husband often tells me it’s time to go out for a walk or he sends me to my room some meditation time. So I will go sit, stretch, breathe, relax. Remove some of the mental clutter. I need to do activities that turn the dial down. Here are some examples of things that work well for me:

Helpful thoughts

Relaxation/meditation

Stretching

Going for a walk

Listening to a motivating podcast/music or reading book

Awareness (posture, thoughts, activities)

Pacing (take breaks)

Carefully preparing a nourishing meal/snack

Be: I re-connect with the present moment, I cannot change the way things are right now so if I practice mindfulness and be aware of what I am doing, I can resume my normal day to day  activities much more refreshed and ready to cope with the current situation.

What do you do? A flare up action plan might be a good starting point. Take note of helpful thoughts or activities that you know turn down your pain dial and be aware of pacing cues, timing and taking breaks.

The Snowball Effect

A single snowflake lands on the snow. With a gust of wind it is carried along. It gathers other snowflakes to it (like attracts like) and as it moves it gets bigger. Its size now moves it further downslope and it gathers speed. It doesn’t not take long before it is hurtling down with a destructive force wreacking havoc in its path.

This can happen to me with a single negative thought about my pain. Let me give an example. I have overdone it and caused a pain flare up. Here is the potential progression of thoughts:

 

"I can’t believe I have done this to myself again. I should know better. I am so stupid. Now I need to get help with the (kids/house/work). I’m such a bad (mother/wife/friend). They must be so sick of me being like this. They probably hate me. I hate myself so why wouldn’t they? "

 

Anyway you get the idea? It was that first negative thought. I allowed it to attract more negative thoughts, continuing to catastrophise, I was then led on a destructive journey down a dangerous slope into self loathing and depression. And with this progression comes the associated physical reaction to these thoughts (stress, tension and more pain!). All from one single thought . One single mistake. My thoughts are powerful and this is my snowball effect.

 

When in this state my emotions are high (some would say even out of control!) and as a result my intelligence is low. I make poor decisions regarding my self-pain management techniques (e.g. choosing rest over movement, choosing to buy in to my unhelpful thoughts, choosing anger over just a simple acceptance of the way things are).

 

A less destructive approach is non-judgemental awareness of my own thoughts. I have control over what thoughts jump into my head, over what voices I choose to listen to. If I can stop a snowball at the snowflake stage I have the chance to break it down before it careers downslope. How do I do this? I need to be paying attention to my thoughts. A short breathing exercise or meditation might give me the clarity and awareness to deal with these thoughts. I can challenge or assess my thoughts before moving onto the next destructive level. Is this thought realistic or true? How can I be sure – have I asked that person how they feel? Is there another possible explanation? In addition to challenging the thoughts I also have an arsenal of more helpful thoughts that I can use to replace my initial unhelpful thought. As in my example above “I can’t believe I have done this to myself again” might become “habits take a while to be changed but it is possible” or “You are getting better at this, don’t give up”.  I can choose more helpful thoughts and be kinder to myself. Then the inner warmth will melt the snowball.

Once I have cleared out my headspace, I have the room and ability to implement the right actions. The pain still needs to be dealt with so I will go to one of the self pain management strategies that I know work – go for a walk, do some stretches, ask for help, pace planned activities etc.

It takes time and practice but snowballs do not need to gather strength and destructive force. A single snowflake can be a beautiful thing when it is simply observed.

My Story - Part 2 (AFTER)

Things were going badly and I knew I needed to do something fast.  I sought help from a pain specialist. We tried nerve blocks, denervation (they burn the ends off your nerves to stop pain messages!) These were excruciating to receive and did not even provide much relief.  My wonderfully caring and insightful GP was on the border of diagnosing Post Natal Depression when he delved further into my situation to decide that pain (and my inability to cope with it) was the real source of my depression. He had another solution. He referred me to the Barbra Walker Centre for Pain Management at St Vincent’s hospital. After a 6 month wait and a number of sessions with their psychologist, I was recommended to attend their three week, in- hospital self pain management course. I am not exaggerating to say it turned my life around. The course gave me the whack-in-the-face wake-up call I needed. They supported me to come off all medications and learn techniques to deal with my pain by taking matters into my own hands. I learnt the link between my thoughts around pain and how this impacts on the expression of the pain. I also learnt that a little exercise is better than nothing because resting makes the problem worse. The lack of activity causes deconditioning of muscles leading to increased pain. This course taught me to become disciplined and educated enough to take responsibility for my own pain management. It provided a long-term solution when medical science could do nothing further to ease my pain beyond offering a bandaid (pill) solution. With the assistance of the clinic I came off all my pain medications (a harrowing withdrawal experience!) and have not had a pain killer in the past 6 years!

Since then I have been managing my own wellness journey without medication using exercise and mindfulness techniques. I had a lightbulb moment in (of all places!) the toilet!  While at the pain management course, the hospital toilet door opened outwards. I was not used to opening outwards and every time I went to the toilet I would push and slam into the door. This went on every time I went to the toilet embarrassingly for probably the first week! One day, early in the second week I went in and stopped at the door.  I smiled and I pulled. I got a blinding flash of clarity. Habits can change. Your mind does learn new tricks! This gave me a gleam of hope for my future. If after 20 years of responding to pain with the same automatic unhelpful thoughts and behaviour that I have learnt only amplify my pain, then I can change these thoughts and behaviours. It IS possible to think a different way. Yes, it might take me a while (I have 20 years to bad habits to self correct…) but I can do it. I will do it.

The benefits of this new approach were immediate and substantial. I gained the strength and confidence to resume my social and day-to-day activities with confidence. Regular daily movement is prioritized in my life. I have become better at communicating with my family and friends about how I was feeling, asking for help when I needed it and just enjoying my extremely blessed life. At the pain management course, my long term goal was to be strong enough to try for another baby. Two years later our second daughter Bridget (meaning strength) was born. Self pain management is not an easy road but with discipline, there is such extreme relief and freedom.

After recovery from this birth, I knew there was still something missing from feeling totally in control of my pain. I needed to do more, I wanted the energy to do more! So more recently I have researched nutrition and its impact on the body and mind. I have been following a wholefoods, high nutrient, healthy diet. This was the key to unlocking that final piece of my puzzle. With the right energy in (good quality, real foods) I now have more energy and this gives me greater strength and vitality to continue to manage my pain effectively. It’s an added benefit but I have lost about 10kg during this period (cool!). I am still learning what does and does not agree with my body however I am passionate about maintaining a good diet and want to fuel my body with the best quality foods possible.

I have been blessed with an amazing support team and I could never have progressed in my journey without the love and support of my family and friends. My husband has been down some dark tunnels with me, seen me at my worst, but his strength and love have guided me through. He and the girls will often send me out on a walk or instruct me to do my stretches! My parents, in-laws, and other family and friends have been invaluable support and it’s such a comfort to know I have people in my corner, egging me on for success.

My story isn’t a perfect one and I’m still working on it. I have bad days and unhelpful thoughts creep in and sometimes I still over do it. But now, I don’t beat myself up about it, I just get up, keep moving because I want to be the best version of myself I can be, for myself, and for my family and friends. I want to walk the walk so I can talk the talk. I want to share with other chronic pain suffers that I’ve been down that road too but look how far I’ve come!

And, hey, my journey isn’t over, but if I waited til I was perfect, you would never get to read this! Why not join me for the ride...

My Story - Part 1 (Before)

My story starts with my older sister being a know-it-all! She was studying Physical Education at university and she was learning about scoliosis and decided to use her eleven year old sister to practise her diagnostic skills. She made me touch my toes and announced to my mum that “Yes, I definitely had it”. Surprisingly, no one (not even me!) had noticed - but she was right, I was out of alignment and had a large lump on one shoulder blade and uneven hips! An out-of-date local GP told me I was going to be in plaster for 6 months. We were all in shock! But X-rays did confirm I had scoliosis, and a pretty severe case too. An S shaped curve measuring 52 and 54 degrees.  

I had two corrective surgeries when I was 11 and 16. While I often brush these off in my story, they were major surgeries for a young girl. Weeks in hospital and off school, rehabilitation, I had to wear a plastic brace for 6 months and have on-going therapy. In the end, the surgeons were happy because they were able to correct the curve and now my spine is straight, with the help of a rod, screws and bone grafts. It makes for a good show and tell X-ray.

My spine X-ray taken ~2009

 

I have had chronic back pain nearly my whole life since the surgeries. There have been good days and bad days. I returned to see my surgeon often and I would explain my pain but he would offer no real explanation or solution.  My pain was generally in my lower left hand side of my lumbar spine, generally around the area where vertebrae are fused together. More recently, bone scans indicated degeneration of the facet joints and further surgery (fusion to the sacrum) was suggested.  But I didn’t want to go down the surgical path again. Alternative therapies were tried with limited success. Partially because I think I never fully committed to their suggested exercises/routines because they never “magically” took the pain away, but also because a single physical approach did not address the physiological issues surrounding my pain.  I have also tried most prescription pain medications. The side effects of these are many and varied but I often would suffer severe constipation from codeine, nausea and motion sickness from the morphine based transdermal patches or effects on mood from the antidepressant range of pain killers. With each new drug I tried it wasn’t long before the mild easing of pain became ineffective. The long term use of prescription medication for my chronic pain was not the answer.

My general approach, on a day-to-day basis, was to cram everything I could into days when I felt good, leading to days of suffering because I had overdone it. I would ignore my pain, wish to be “normal” (read pain free – what is “normal” anyway?)  and just power ahead. I didn’t tell many people how awful I was feeling (except the inner sanctum - my husband, my mum). For everyone else I slapped on my brave face (and I got pretty good at it as far as I could tell!) As I have aged my flare-ups got worse and my ability to deal with them drastically decreased.  

My husband and I were always worried how I might go having a baby. I became pregnant in March 2007.  I was working fulltime and after coming home many nights in tears from the pain. I reduced my hours but then decided to resign when I was 5 months pregnant. Once I stopped working, the pain seemed a little better but this was most likely a result of the reduced stress and travel to and from the city. I was induced at 42 weeks and had an 8 hour labour. But it was all worth it when our beautiful daughter, Olivia arrived. She was a calm and easy to settle baby but all the changing, carrying, settling, picking up really took a toll on my back, particularly as she got bigger and heavier. I was having 2-3 days in severe pain (mostly in latter part of the day) and frequently needing help. I was depressed because I felt like I was unable to look after my child properly. I was often in tears about being a bad mother, feeling like I would never be able to run and play with her whenever she wanted to, pick her up and carry her around when she needed comforting. About a year after the birth (as those pregnancy hormones were fading and as she got heavier) I was near rock bottom.

I would become almost obsessed and consumed with my pain. My negative thoughts around my pain would escalate from thinking “I can’t deal with this” to “I am a hopeless mother/wife”, and “I am letting everyone down”. My husband referred to these thought processes as snowballs. I would get wound up catastrophising every idea, rehashing past mistakes, worrying and fearing future unknown pain events and rarely in the present moment. I went from a gentle snowflake to an avalanche, careering out of control down a dangerous emotional slope. I never even realised the destructive power these snowballs had… I was too consumed by my pain. I found it hard to look beyond it to see all the beautiful things that were still good in my life.  I had so much to be thankful for…but I just couldn’t see past the pain. And the difficult thing was I felt so alone. Despite the fact that 1 in 5 Australians suffer chronic pain and that so many people suffer in similar ways to me, I thought I was the only one doing things tough and suffering. I couldn’t see the true impact my condition was having on my family. They suffered too by watching me suffer. I felt I was such a burden to them. I actually believed they would be better off without me. Pain blurred my reality to such a degree that I could no longer see beyond it. I became so wrapped up in my misery that hope seemed an impossibility. 

Please don't stop reading (its a bit depressing isn't it!?)...If you have the time, read My Story - Part 2 (AFTER) because this is when I really changed my life and began to TAKE HOLD of my PAIN!

If you can associate with any of these symptoms, feelings, thoughts, experiences, please comment below and share!

What will this space be about?

A place to share information and support people choosing to self manage chronic pain. I will share my story, my wellness journey, in the hope it will inspire and help others.