Chronic Pain and Parenting

Parenting can be a hard slog at the best of times. Kids can be very demanding. When you have little people running around needing your attention and you have pain, let’s face it, it is damn hard work!

 So I wanted to share a few tips for parenting and living with pain.

Get them involved. Growing up, I had chores to do (although, being the youngest of 5, I was very good at squirming my way out of them!). With such a big family, we all needed to pull our weight and learn how to be self-reliant. I want my kids to grow up learning these skills too. Getting young children involved in basic housework will mean less work for you in the long term. However, sometimes their involvement does come with strings attached. Recently, I have started bargaining my kids for their efforts. If they are getting set to watch some television, I might say “how about we spend 10 minutes cleaning your room before we put on that show?” Other people I know will use pocket money as an extra motivator. Mostly, it goes down well and they get stuck into it – and if it means 10 minutes less work for you later on – surely that’s worth the effort! Here is a list of age-appropriate jobs to give you some place to start...

 

Practice self care. My kids now understand when I need “time to self”. They are getting to a good age for being able to entertain themselves while I undertake a necessary self care task whether it be a meditation, stretching or a walk/exercise outside. I have said to them to not disturb me unless it’s an emergency – like blood or fire. One day recently my eldest tentatively knocked on my door while I was meditating to let me know of the “emergency” – the TV remote had run out of batteries! However, by demonstrating that I need to look after myself, I am also setting a good example for them to follow into their adulthood because, pain or no pain, taking time to look after yourself is always time well spent. There is also the old adage that a healthy mum has healthy kids. If I don’t look after myself (and for me this means attending to my pain self management techniques), I will become an irritable parent with a pain flare and that won’t be much fun for anyone! There is also a reason they say on a plane that you need to attach your oxygen mask before attending to others!

Image taken from http://thegate.boardingarea.com/safety-video-children-delighted-to-see-oxygen-masks-drop/

Replace guilt with gratitude. Before I started learning to manage my pain, my default solution to pain was to rest. Still today, if I am having a particularly hard pain day, I will be gentle on myself and allow myself to “take it easy”. Previously, I would stress myself further during this (already) difficult time by piling on the mummy guilt. Berating myself that “I should be playing with the kids” or “I should be doing some housework”. I felt bad that I couldn’t give them some fun experience because I needed to rest. Enter guilt and negative self talk. So to flip the perspective, now I try to focus on gratitude. I am grateful for the opportunity to snuggle with my children. I am grateful to spend some quiet time with them reading. Rather than feel guilty for not doing something, I am grateful for and enjoy what I am doing, right in the moment. But I will admit this is still an area of struggle for me. There will be days when I feel I am a “bad mother” – I think this is hardwired the day we give birth. It’s a good chance to look at the big picture. Overall, I think I do a good job. Some days, we will have a blip in the system but that’s manageable.  Kids are pretty resilient, they will survive just as we do!

 

Mindfulness. Chronic pain or not, kids provide an excellent opportunity for mindfulness practice. They are almost always in the moment. They unashamedly believe the world revolves around them. So for every activity they undertaken they become absorbed. There is little room in their developing brains for worry, rehashing past mistakes, stress etc. It is all about the here and now. So parenting can help to bring us into this same mindset. A friend once suggested to me that each child should get 30 minutes of focused attention from you a day. Initially I thought – that’s easy. But focused attention, at the level of a small child, is hard for our fast paced brains. To sit and play and be totally mindful of the process is actually pretty hard. But the more we do this kind of thing, the strong our attention becomes. Here is a good book all about this topic....

 

Teachable moments.  Parenting is a big responsibility. This little malleable mind is all yours to mould! I believe I am setting an example to my children by showing them, everyday, that for me to be healthy, I need to invest time and effort. Living well while self managing chronic pain takes strength and discipline. I am modelling to them that I take control of my health. This is a lesson I want them to know. In the future, if they face health challenges, I want them to know that they have the ability to get through it. But at the same time, I want my kids to know that life can sometimes be hard. Everything is not always rosey. They know I have a bad back and I want them to be aware that people struggle with stuff, no one is perfect. So, I am hoping they learn a little empathy along the way too.

I would love to hear your experiences. Do you have any good tips for other parents? Please share or comment below. And one last thing, hug those kids of yours, they are so precious. Time goes pretty fast, so enjoy every moment. If we are honest, they send us crazy most of the time, but we wouldn’t change them for the world. It's worth it for the smiles, the cuddles and the notes like this.....

 

Three key lessons I learnt from taking a break

I have always placed some very high expectations on myself. When I began Take Hold of Pain (THoP), I had grand dreams. After spending so many years struggling and suffering with chronic pain, I was passionate about helping others avoid suffering. I often would model my dreams on what I saw other amazing wellness entrepreneurs doing online. I wanted to have that too. In my first year of developing the THoP project, I pursued speaking, writing, coaching, learning, teaching and podcasting. I usually only managed to find about half a day a week to work on all this stuff! So, it doesn’t take an Einstein to figure out, it was all a bit much. Add to that, I had some major changes and challenges on the homefront. Towards the end of last year, I felt a major crash was heading my way. The warning signs were there. I was neglecting my self-management strategies, pain was rising, I was often tired and unwell...I needed to stop. I needed to take some time out and focus on me. So, I stepped back and I put many things on hold including my business. This gave me some space to pause, look around and re-assess what I really wanted.

Taking this break, these past few months have taught me some important lessons.

#1. Knowing what makes me happy. Taking a break gave me the time and space to realise what I love doing. I love spending time with my family. I love preparing healthy meals and treats. I do love cleaning and de-cluttering (well, maybe not the actual process but definitely the results of my labours!). When I was working and trying to juggle my many roles, I was neglecting the things I loved doing. The messy, disorganised house led to the frazzled, overwhelmed and irritable mum. A lengthy to-do list replaced easy-going, spontaneous fun times I enjoyed with the kids. The lack of healthy food and snacks led to the return of packets and processed “easy” meals. All of these things led to a decline in my health and subsequently a decline in my overall mental wellbeing.

Being the fun mum makes me happy. I had become a busy stressed mum and let me tell you, she’s no fun at all. She gets angry at little things. She yells. The fun mum takes the time to walk in the rain, dance around to daggy 90s music, to potter in the garden or just take a cuppa into the sunshine. She’s the one I like and she’s the one my family needs. Knowing what makes me happy has made it easier to prioritise. I want to do many things but the important ones, those that come first, are those that make me happy.

#2. It’s ok to go slow. When deciding to take a break, I did some soul searching. Who was I doing this for? Was I trying to prove something? I knew I wanted to help others experiencing pain and health challenges but I wasn’t willing to do it at the expense of my own. I needed to put my own health and that of my family first.  I was really worried that taking a break would be considered unprofessional. I was scared of loosing those few followers with whom I had started to build a connection. Despite being unsure I also knew I needed to refine my workload. I had too much on my plate and some things had to go. But I learnt that it’s ok to do that. It’s ok to put myself first. In fact, sometimes, it’s necessary, especially when you have to live with chronic pain. If you don’t, if you continually put others first or chase that big career goal or whatever it might be, things can get worse. And I have been down in that hole (see my blog on darkest days). I am not going back there.

Everyone’s journey is different. When we compare to others, we convince ourselves their life is easy, a clear path to the top without problems. In reality, most people have a tough slog. I think I convince myself that other people have had these overnight successes. People who are successful, fulfilled, have optimum health or happy usually had a hard slog to get to that place. It would have involved countless hours of self exploration, refinement and experiences and yes, I am sure they have had their failures along the way too. It was more likely a slow progression, interspersed with a few setbacks. Most importantly was how they responded to those set backs. Asking themselves “How will I go on? How will I manage? What have I learnt do differently?” So this led me to ask myself, if I let go of all that comparison and accepted where I am on my own journey right now, if I focused on where I am today, then the important question, for me, is...what do I need to do today that helps me achieve my goals and aligns with what is important to me? And if the answer is, do nothing, then that’s ok. Tomorrow the answer might be different but I need to just focus on what is important right now.

Going slow is also a concept I am passionate about because, in essence, this is what pacing is all about. I love pacing. I love how it can get you started on your goals, it can get you through simple daily tasks and it can help minimise flare ups and prevent overdoing it. Don’t worry, I will talk more about pacing soon because...well (spoiler alert) I am writing a book all about it!

#3. Celebrate where you are. I have come a long way from the crying mess on the floor 7 years ago. Then, I was depressed, withdrawn and without hope. These days, I am more mindful, I don’t dwell on unhelpful thoughts (well, rarely!) and I don’t let these thoughts snowball out of control. I have a busy life with two young kids aged 8 and 4 and a husband who runs his own business. I volunteer at school, I bake and cook many things from scratch using wholefoods, I also teach and share my story with others. Hey, I think I need to cut myself a break. I do plenty. I am enough. Why is it always so tough for us to recognise and acknowledge that we are enough? We are all doing a good job. We don’t need to always be striving and searching and wanting more. Here and now is fine.

As a part of all this, I think taking a break also made me become more aware of what I can do and what I cannot do. I have learnt to negotiate that fine line between managing and falling in a heap - my tipping point. So as a result, recently I wrote up my 2016 goals and plans for my THoP project and then compared this with my current commitments (working part time for the family business, my volunteer commitments, the family sporting and leisure schedules) and guess what, they don’t align. I know that too much pressure would result from trying to achieve these two parts of my life. I have a daughter in her last year before school, I need to cherish and nurture her this year. I have a son bravely figuring out who he is and where he fits into the world. I want to be there for them and be that fun mum. I need to be realistic. So this year, there won’t be that much coming from me. I want to enjoy my family time and when there is space and time, I want to write and teach and continue sharing my story. But, I need to go slow, look after myself and enjoy the ride.

Here are my lovelies, these are the ones who make me happy.
I love this photo too because you can tell here, I am the fun mum!

 

 

 

 

Chronic pain patient writes a letter to her GP

Dear Doctor,

Please find below some suggested principles upon which our relationship could be based:

Communication/goals: The giving and sharing of information. Let’s work as a team. Together, we can go on a journey which includes communicating, listening and doing all within our power to achieve a common goal. While this goal might be different for each patient you have, surely an over aching goal for all patients is to have an optimum level of health. Let us both be clear. I know you may not be able to take my pain away but I want us both to work towards optimising health.

Solutions-focused: I want a sustainable, long term solution. There are many options available to manage chronic pain and I want us to work through these together. When an option is not working, for example the long term use of pain medications, we need to find an alternative, which may include a non-pharmaceutical approach.  I would like all options to be considerate of the end goal (optimising wellness) and therefore we need to consider lifestyle factors, side effects and not focus solely on masking symptoms.

Shared empathy: A good relationship is built on each member of the party having a good understanding of what the other member is going through. We can both actively attempt to put ourselves in the others shoes. For you, this might mean finding the underlying problem behind the symptoms presented. I understand you may never have personally experienced chronic pain. Please, go ahead and use a little imagination or rely on the many other patient experiences you have been presented with. I want to be heard and understood. And often it is the real and debilitating impact of my symptoms that I would like you to understand. For example, constant tiredness may be a symptom but imagine the impact of that on your lifestyle...disconnection from social engagements and family commitments, isolation, guilt and a lack of purpose or sense of helplessness. For me as the patient, empathy might mean walking into our consultation with a realistic perspective of your background and experience. I realise that you are taught to know a little about a lot of conditions and you cannot be expected to know everything. I also appreciate you are time strapped and under pressure to see patients for a very limited time.

Team work: This is where I believe a really good team operates most effectively. All parties feel empowered and work together without a feeling of being told what to do or following along without the option for input and involvement. I would hope that you can give me adequate information about options for self management.  I realise that you may be able to assist with some of the physical pain but much of the responsibility to manage the additional suffering (emotional, stress and lifestyle factors) comes from responsible choices I need to make.  I want you to support and encourage me to make those choices.

Finally, this is NOT what I would like our relationship to be:

• Half an ear listening to my story, a quick scribble on your prescription pad and a gentle shove out the door without a second thought.
• A sense that my story is not being believed or understood.
• Me submitting all my power to you to take my pain away and/or find me a miracle cure (because I know this is unrealistic and unfair to our relationship).

So that said, let’s get moving....

 I would love to know your thoughts and experiences...Just so you know, I wrote this blogpost based on a recent request by Chronic Pain Australia for feedback for doctors from consumers living with chronic pain. Many of the responses were negative towards GPs and their lack of understanding.  I was inspired to write this based on my positive relationship with my own GP. He helped me to become my own health champion and self manage my chronic pain. Without his insight and understanding (and without his life-changing referral to a self pain management clinic), I would never have reached the levels of health and wellbeing I have today. So I would like to say a big "Thank You" to him. You know who you are!

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.