If You Really Want To Manage Chronic Pain – Stop Doing These 4 Things

If You Really Want To Manage Chronic Pain – Stop Doing These 4 Things

Pain has been a part of my life for as long as I can remember, sprains and strains as a kid, always falling, unable to weight bare on and off throughout all my childhood which I now know was due to a Labral hip tear and impingement, as well as dislocations, subluxations and neuropathy.  All painful. Eventually chronic.

Throughout this time I developed my own list of coping mechanisms to manage chronic pain, they all served me at the time but ultimately long term were not the answer.  I’m going to show you what you need to avoid if you are going manage chronic pain and stay sane and what you can do to help yourself.

My first coping mechanism was born from the doctors and medical professionals telling me that nothing was wrong.  Eventually I began to disconnect from the truth as a way to cope with my reality – to just carry on.  Sadly this disconnect became my normal.

I would relocate my knee cap back into the socket after a dislocation and walk straight into a night club and dance the night away. I could hold a full conversation with a dislocated rib and you would never know.  I would sit in a staff meeting wanting to sob as the neuropathy in my feet was burning like a furnace beneath me, all the time running the narrative that I was ok really.

My go to coping mechanisms were to distract and ignore.  The pain shouldn’t be there and ultimately to feel pain came an element of failure.  After all the professionals were telling me that there was no medical reason for it.

Avoidance…  that was my way.

For others being in pain all the time means that thoughts about it never leave their mind, welcome second unhealthy coping technique… indulging.

You think about it, ruminate, brood, beat yourself up.  The constantly running narrative or ‘It used to be so much better’, or ‘I used to be able to do x or y why can’t I just do that now’.

Your mind also worries about what tomorrow may bring before tomorrow is even here with thoughts like, ‘This is never going away’, or ‘I’m never going to be able to do x again’.

And the spiralling blame that you may have that you caused this in some way and the subsequent feelings of fear, guilt and shame.

Even as I tried to distract and avoid feeling pain I had to think of it to block it.  The pain was never far away.

Then there is distraction, I’m not talking about healthy distraction here but doing anything you can to avoid discomfort in the moment. An extra glass of wine that turns into two or three, or when you zone out watching cute puppy videos on You Tube and before you know it you haven’t moved at all for two hours.

 

 

These coping mechanisms exist to protect. To protect you from the pain you are experiencing right now and may experience in the future. But when you distract, ignore and resist or even indulge the pain you actually become its victim, in that moment you have given the pain control.

Ignoring, indulging and distracting are tiring for one.

The resistance to the pain is the hardest thing not the pain itself.

By just letting go of the stories and thoughts that you have around your pain : that it should be a certain way, that it needs to be a certain way, that it will always be there, that you caused it in some way, immediately takes away its power.  Without the stories it is what it is… a sensation.

I distracted myself from my pain, I ignored it when it was screaming at me for attention, indulged in the stories, I resisted vehemently what I felt in my body, and I did this for decades.

My pain was just asking for my attention, it was not trying to destroy me but to wake me up. To make me listen to its wisdom.  And I chose not to listen and ultimately did not give my body the nourishment that it needed when it needed it.

While I was ignoring and denying the pain and pushing through every day I was often too tired to eat well (grabbing take out after work), to enjoy time with my friends, to have fun.  I did not nourish my body or my soul as all of my energy went on surviving.

I have learnt that you always have what is present, in any moment without the stories of what was or should be, or was, or may be tomorrow.  You have now.

With pain we have what is present now.  And when we drop the narrative of ‘Will it be there tomorrow’, ‘Will it be worse?’  It never going to be better!’ we immediately lose the resistance to the pain.

What we are left with is the sensation of the pain itself and when we begin to allow the pain, however it shows up, really tune in to the sensations, to give it space, to listen to the wisdom that it has – we wake up.

When I have a dislocation and I have to relocate a joint, I ask myself, ‘Am I OK in this moment?’  the answer is always ‘Yes’.  And when I let go of that resistance, the panic, the story, then I manage the pain in the moment with more wisdom, calmness and compassion.

All my life I had learnt that pain was not safe, that it was an unwelcome visitor to my door, there to hurt me now and in the future.  But I decided to look at this visitor with a fresh perspective… what if this was not a threat but a welcome guest?  What if it had things to teach me?

It was then that pain lost its hold over me, the hard thing had been the hold pain had over me, not the pain itself.

 

 

Pain has taught me to slow down, to listen to my body and nourish it with what it needs, to be grateful for the gift of my body and how well it works for me even with Ehlers-Danlos syndrome and Charcot Marie Tooth disease.

I am not pain, pain is just in me.

By being more present with what is there every day and losing the stories associated with my pain I can just be with the sensations that are there at any one time.  Get intimate with those feelings, explore what’s real, and give whatever is present room to be.

I can then act from that place of acceptance knowing what is real.  Sometimes I need to rest, to nourish myself, to be kind, to treat the pain with medication, or with compassion.

When I was in a place of resistance, distraction, indulgence and avoidance this was not possible.

Clearing this has been like pulling up weeds from the roots.

I don’t know if I will be in pain forever or if it will be better or worse tomorrow that it is today.  All I know is what is true now and how best I can act and manage the situation that I have today.  I still over do it and have days when pain is increased but I treat myself with compassion on those days and tune in even more to what my body needs.

Without the resistance to the pain, I no longer feel a victim to it.  It’s not me against the pain anymore, it’s not a fight, I don’t have to hide.  The narrative has shifted and I no longer see it as my enemy but my teacher.

 

 

What is your relationship with pain? Do you recognise a pattern? Do you resist, ignore, indulge or distract? Are you willing to develop a new relationship to pain.  Let me know in the comments I would love to hear ❤️ your perspective.  

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Chronically Empowered Women is a community of ladies who have chronic illness in their life in some way…. come and join us!

You may feel like no-one understands what its like living with your chronic illness or worrying everyday about your kids. That you are hanging on by a thread or the future may feel a little uncertain. In the tribe we get that.

You value life and want to be the best version of you. To manage your symptoms effectively so that you can live your best life. 

In the community we will be having real, open conversations about how you can do this. With my experience of living with multiple chronic illness’ and raising kids with CMT, EDS, PoTS and ME. I know that the struggle is real. I will be sharing guidance, challenges, my personal tips and real life stories to remind you of how this can become a reality now!

Managing Chronic Pain Without Medication

Managing Chronic Pain Without Medication

7 golden steps to manage your chronic pain

I have lived with pain for as long as I can remember, it’s now chronic, it’s never going away.

I have Charcot Marie Tooth disease, a neuromuscular disease that affects the motor and sensory nerves to my arms and legs, you can think of it as having wonky wiring.  I also have Ehlers Danlos Syndrome, a connective tissue disorder meaning in simple terms that the glue that holds my body together is too stretchy, like chewing gum. One condition is progressive the other multi-systemic meaning chronic pain and fatigue are common features in both of these conditions.

For generations pain is something that I have tried not to think about, to put to the back of my mind, to push through.  I had always been a high achiever, setting myself goals and working hard through school, university then in the world of work, there wasn’t time to bother with the pain and the limitations it placed on me.

As the years rolled by my ability to keep up this fight began to slip away, I was having more periods of chronic fatigue wiping me out for months and pain that would consume me.  It has not been uncommon for me to collapse, physically unable to put one foot in front of the other.  My health had already robbed me of me career as a teacher. Then in a gradual process, that to the untrained eye may even remain unseen, my life became more and more difficult. I never made it out in the evening with friends and even taking the children to the park for half an hour was a huge effort, everything revolved around the pay off and the pain that the task would bring and life began to get smaller and smaller.

I decided to fight back but in a different way, this was an active choice for me. It was only at this point that things started to change. Over the last ten years, in a slow steady process I have made positive steps to cope and to live.

Looking back I can barely recognise the desperation that I felt at that point in my life and the overwhelm that consumed me. I now see what that it is a combination of lots of elements that have allowed me to change and maintain that change over time.

 

 

Managing chronic pain without medication in 7 golden steps

 

 

 

1. Acceptance Lady with her head in hands due to chronic pain

One of the hardest things for me has been acceptance, my chronic pain is something that I would like to get rid of but I can’t, at times it has angered me and made me sad, reflecting I think that’s helped me on this journey. It is part and parcel of EDS and CMT and may get worse over time, I now accept this fact and deal with it. I view pain relief now as a form of control rather than it being a weakness. It is proven that mood and stress all have an impact on pain. So the process of acceptance involved becoming a master of my emotions and my thought processes and letting go things that are not serving me. With this my chronic pain has become easier to manage.

 

2. Let go of all negativity

I have learnt to let go of negativity.  Some people won’t understand the pain that I live with or how it impacts everyday on my life. This used to bother me a lot, especially when a family member didn’t have a clue and did not want to take the time to learn but would be quick to judge, dis-believe or offer advice.  Or when someone would give me ‘poor you’ sympathy when I know full well they really didn’t care. I can’t say that I am totally immune to their comments, I’m human after all but I am learning to let go and to focus on what is important, life is too short. You do not have a control over other people but you absolutely have a choice over how you respond to them. It strengthened my relationships with people around me that are important and allowed me to see which relationships were not serving me and let go.

 

3. Empowerment through learning

Empowerment came when I made friends with my illness. When I was first diagnosed I didn’t want anyone to know about it, I wanted to be normal, the same as everyone else. I went through a long grieving process. I grieved for the things I knew I would loose and where my illnesses would impact. This took time. Now I can talk to anyone about these conditions and enjoy sharing my experiences with others, EDS and CMT are part of me and that’s fine.

I have learnt about my conditions in order to manage them, reading, networking and attending conferences have all enabled me to understand why I have my symptoms and the correct ways to manage them, it’s made a huge difference. Facebook has been an amazing source of information but I steer clear of the ‘poor me’ Facebook groups about my conditions where people seem hell bent on competing to have the worst symptoms, as I believe that is not a healthy narrative. Where there is support, great… learn, take what you need and move on. You are more that your illness and spending too much time online in un-supporting environments can be counter intuitive.

 

4. Strength through exercise

I’ve got moving, I regularly attend Pilates classes, I brought a dog so that I have to walk every day (although as he ages and my knee is failing, neither me nor the dog can manage to walk most days) and I do resistance training most days even if it’s just 5 minutes. In the past I have driven to a Pilates class (on more than one occasion I might add), parked up outside and sobbed.  Part of me knew that I must push myself to go in, to get stronger, to get better but I didn’t have the energy to get out of the car and walk through the door, I would drive home defeated.

There is a balance to be found between being doing too much and doing too little, both are counter productive, it is important to build strength at a steady pace so that you can maintain it.  Slowly, the stronger that I have become, the less falls I have and the more confidence I have gained and I don’t visit that rock bottom place so much now. I feel proud of what I have achieved. When a trusted consultant reviewed my history and surgeries they were genuinely surprised at how mobile I was, that I should be pleased I was not using a wheelchair.

When you exercise, your body releases chemicals called endorphins. These endorphins interact with the receptors in your brain that reduce your perception of pain. Endorphins also trigger a positive feeling in the body, similar to that of morphine… so a win, win for pain.

 

5. Coping strategies

One of my friends commented how vague I am when making arrangements. She was envious at my laid back nature as she always liked to be super organised.  Now she realises that I am deliberately vague as I can never predict how I can be feeling from one day to another and that way I don’t have to cancel plans if I can’t make it. I type instead of writing, we have installed a zip tap so I don’t need to lift a kettle, I have two handled pans in the kitchen and I have a cleaner. I have developed these coping strategies without even realising it over time.

I have learnt to set boundries in my life without feeling guilty about it and to focus on what I need and want leaves me more time and energy for the people that I love. This new way of looking at my life took work, but ultimately I am showing my children that they need to value themselves too.

Don’t underestimate the power of lots of small interventions, they can make big difference.

 

6. Pacing, pacing, pacing

lady tired due to pain and fatigueChanging my mindset did not happen overnight.  I rebelled.  With a busy family I thought that the only way to

function was to push, push, push but I realised that it made the crashes more severe.  Feeding into the boom and bust cycle only serves to increase pain over time, once I understood this and could see the benefits that change could offer and it became easier to implement. Pacing my day activities to stop feeding into the pain is my most effective way to manage long term.

 

7. Focus on the good

Have you ever been buying a new car? You see that car everywhere don’t you? The same happens with your illness. The more focus you give to the negative elements of your condition, the pain, fatigue, the loss, what is hard for you now, the more you will see evidence for those things. The subconscious mind likes to send you evidence for the things that you are thinking about.

I try to focus not on what pain takes from me but what it has given to me, the relationships that have been strengthened, confidence, positivity, empathy and  my ability to not sweat the small stuff.

 

 To Sum Up

I love to give back, at first this involved writing and sharing our families story with the world @Mystripylife about living with these often mis-understood and under diagnosed conditions. I love to speak at events to raise awareness. The catalyst was always to raise awareness and make things a little different for my children as they grow and embark on their own journeys with varying degrees of symptoms from CMT, EDS, PoTS and ME.

This has grown into undertaking training as an NLP coach to support others on their journey and empower them to live chronically well. I give them the ability to laugh, to see the beauty in every day, recognise their needs and values and how they may have changed, re-discover who they are and what they love, find balance with their health, work, family and life and always know that whatever life brings happiness is a choice.

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