Managing Chronic Pain Without Medication In 7 Golden Steps

Managing Chronic Pain Without Medication In 7 Golden Steps

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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No Ones Life is As Perfect As Their Social Media Feed

No Ones Life is As Perfect As Their Social Media Feed

No ones life is as perfect an their social media feed

The explosion of social media over the last 15 years has opened doors for people in many ways;  It has the power to connect like minded people all over the world, at any time and it gives instant feedback and it increases your visibility. In the world of chronic illness it has given people the power to educate themselves about their conditions, to share and learn from each other’s expertise, allowing them to become truly empowered in their own health and wellness so that they can work with health professionals to manage their conditions long term. Personally, I have learnt so much online, instant access to information fuels my desire to know more, I have connected with some truly amazing people from all over the world that I wouldn’t have had the opportunity to do otherwise and it has opened doors for me to raise awareness about living with chronic illness in schools, hospitals and universities.

However, we must be mindful that this virtual world is just a snapshot of reality. People can be who they want to be.  The shiny pictures of your friends new house hide the crippling mortgage repayments that they struggle to meet each month.  The beautiful smiling family photos mask the fact that their marriage is being held together by a thread.  Make up and a smile can be a beautiful mask for depression, grief, chronic illness or pain.

Let me show you what I mean

I’m going to show you a peek into our lives to highlight that what you see on my social media feed is not always all that it seems.

I took some lovely family photos on a trip to London’s South Bank a couple of years ago. We look like everybody else, minding our own business and enjoying the sights. What those smiley photos of my family don’t show you is that the reason for our day out in London was another road trip to one of the city’s many specialist hospitals. An attempt to make a ‘day of it’ once we had travelled into town.

They don’t let you know about the conversations with my husband deciding if we should hire a wheelchair for the day for my son or if he could manage a few hours out with us without it. You don’t see that my daughter used her wheelchair for most of the day, but hopped out for the photo opportunities with her brothers.

The smiles hide the fact that my daughter is feeling poorly with a sore throat and by the end of the day she said her heart hurts just because she has stood up out of her chair.

You don’t know that the reason we had a few little sit downs along by the river was not the soak up the sights of the South Bank but to pace and rest on the way to our destination. Due to my son coming over unwell and clammy or because I just had to take the weight off my feet for a minute.

It doesn’t show in the photos that the motivational speech by the Lego artist at the start of the exhibition really hit a chord with me. As he talked so eloquently about his inspiration for the exhibition and that everyone is a superhero and can overcome life’s adversities. He could have been talking just to me.

My smile and make up mask the fact that every step I took was excruciating as my knee is finally falling apart and is bone on bone in the joint as I walk. And by the time we had looked around the exhibition the toes on one of my feet literally felt like they were on fire and cramping all at the same time.

The photos don’t show you that when we stopped for food the first thing that we ordered was tap water so three of could top up on our pain meds.

They do not show you that the next morning my daughter was on the sofa under a blanket with HR monitor on her finger and it kept jumping to the high 140’s as she was still feeling poorly and her autonomic system was just out of whack. Or that our son did not really surface for a few days as the inevitable pay off for our day pursued.

You see this is the reality of living with a chronic illness that social media rarely shows. I love the fact that we can share in life’s triumphs, that I can read positive things on people news feeds, smiling children, happy couples. Lord knows we need to celebrate those things more than most but we need to remember that an afternoon out doesn’t mean that we are cured, that we aren’t tired or hurting or going to pay terribly for it later.

A smiling face, great lighting, a photo filter, just like a shiny new car often masks the truth and that is never more true than in the world of social media. It is important not to feel threatened by or envious of the false reality that we see everyday.

Comparing yourself to others

We typically compare the worst we know of ourselves to the best we presume about others. We are all too unique to typically compare ourselves fairly to another. Other than never really knowing the full picture about someone else life, you must remember that you are unique, your talents, successes and value in this world are unique solely to you. How can that ever be compared fairly to someone else?

At the end of the day when you waste your time focusing on comparing yourself to someone else you are concentrating on the wrong thing. There is only one life that you have control over at the end of the day and that’s yours.

It is important to remind yourself that no-ones life is as perfect as their social media reels and no one is living an untroublesome life, weather you are close enough to know about it or not.

Finding inspiration and learning from others is wise, humans are amazing and there is so much knowledge that we can acquire from each other, but there is a fine line between this and self comparison. If you find that comparison keeps showing up in your life, a good place to start is notice the effects that this is having on you. Intentionally remove those thoughts from the inside out by reframing them in to the positive.

Work on comparing yourself with yourself. Spend your time and energy on being the very best version of you. Commit to looking after yourself physically, emotionally and to grow a little more each day. Learn to celebrate your wins without comparing them to someone’s shiny life on the internet.

Remember, no ones life is as perfect as their social media feed.

You may also like LESSONS I’VE LEARNT TO HELP ME LIVE WITH MY CHRONIC ILLNESS  or HOW TO SET GOALS WHEN YOU HAVE A CHRONIC ILLNESS 

Want to start with looking after yourself, but are not sure where to start? Join The Thrive Tribe on Facebook and download your free copy of my ULTIMATE GUIDE TO SELF CARE and HANDY CHECKLIST, details below.

girl pretending to be superman her wheelchair is out of shot. Social media does not show everything!
mum and daughter smiling and having a cuddle. Social media does not show the full picture, that they have just dosed up on pain meds
girl taking popcorn from a lego joker, what social media doesn't show is that her wheelchair is just out of shot.

Join The Community

The Thrive Tribe is a community of women who have chronic illness or are a parent to a child who has an illness or disability.

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 Thrive 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. Or, to support your children to live theirs.

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!

When you join the Tribe you can find your ULTIMATE GUIDE TO SELF-CARE and HANDY SELF-CARE CHECKLIST available in the files to download.

A 10 minute guide to understanding that self care is far more than having a bubble bath and lighting a scented candle. Why it is important to plan for if you have a chronic illness or are caring for someone who does and, a handy checklist to get you started with great self-care practices to support yous physical and mental health and that fit who you are!

 

How Self Compassion Helps To Combat Loneliness

How Self Compassion Helps To Combat Loneliness

I have written this article after being asked to share my thoughts on how self compassion can help with loneliness for the Podcast ‘How To Be…’ by the amazing Suswati Basu.

 

What self compassion means to me

Self compassion, put simply, is the ability to have self kindness in the face of failure and a realistic mindset where you don’t obsess over the negatives.

It can really support you to deal with difficult situations. So if you have chronic illness in your life, either for you or a loved one self compassion is going to be important to see you through the tough times.

Chronic illness aside, being a self compassionate person can enhance your overall life satisfaction and both your psychological and emotional wellbeing.

 

How does self compassion link with loneliness

The holiday season is typically a tough time for some and this year with the COVID pandemic and travel and social mixing restricted the issue of loneliness has been brought to the fore. We all recognise how essential social connection is for us as humans.

But, loneliness doesn’t always happen just because you are alone, it’s a feeling and is very personal so everyone’s experience of loneliness will be different. You can feel lonely in a room full of people because your need for social interaction is just not being met.

I know because the most alone I have ever felt in my life was when I was surrounded by my family and friends and a husband that adored me. It was a little after my son had become bed bound with M.E. (Myalgic encephalomyelitis/chronic fatigue syndrome).  I felt completely disconnected from the world in which I was living.  It was like I was going through the motions each day in some kind of outer body experience.

Practicing self compassion can counter some of the feelings of loneliness such as depression, anxiety, inadequacy or low self confidence. On the whole compassionate people generally have better social connections, it can help to reduce stress, lower anxiety and helps you cope with stressful life events. It certainly helped me when my son was ill.

 

What can you do to increase self compassion?

There are some things that you can start to do today to improve your self compassion. The more you practice the easier it will become as new neural pathways are formed in the brain. It’s like training a muscle, the more you work it the stronger it gets.

1. The first is to really acknowledge your feelings and think them through – meet those feelings with compassion but don’t let them consume you.  Try planning something fun to look forward to, do something positive (no matter how small) to move you away from any negative thoughts or feelings.  Allow your feelings but allow fun too.

2. Make sure that you prioritise self-care – this can range from a simple walk outside in nature to sitting and just being with your favourite hot drink and a book, whatever works for you.

3. Mindfulness is really helpful to reconnect you with the present moment – you can often feel disconnected because you are in a place of judgement about yourself or others. Practicing mindfulness will help you feel calm and respond with a greater awareness and perception.

4. Stop comparing yourself to others, your life is your life – it’s your journey no one else’s. Constant comparisons just lead to resentment and deprive you of joy. Your gifts and talents, successes, contributions, and value are entirely unique to you and your purpose in this world. They can never be properly compared to anyone else.

5. Interact with friends or family to improve your relationships and if that’s hard, start with the relationship that you have with yourself.  When that improves your relationships with others will.

6. Finally and one of the most important things to do is to give yourself the same compassion that you would a really good friend, including how you talk to yourself.  Be kind to yourself first.

 

Join The Community

The Thrive Tribe is a safe place for women with long term, chronic illness or disability (or those who are carers of kids with chronic illness). It is a space to be you, to be honest that you want more than this, to be honest about not knowing how to start. A place where we can lift each other up and support each other. Where you can share your story and where we can inspire each other with our wins.  It’s about understanding that life can be tough but also that we can do hard things. About recognising your own unique superpowers! To feel like you belong in a community that has your back.

The Giveaway

This month if you join The Thrive Tribe I am offering you the chance to win 1 hour 1:1 private NLP coaching with me, to be taken in January.  All you have to do is follow the link below and join the group! See you over there 🙂

Join The Tribe Here

 

Self Care Is Not Self Indulgent

Self Care Is Not Self Indulgent

We live is a society that loves achievement, qualifications and success.

Many people work extremely hard to get there – often ignoring the warning signs that their bodies are giving them. In this fast paced and driven world if you stopped and asked your self ‘What do I actually have to give?’ the answer is often ‘Not much!’.

When your energy goes on surviving there isn’t much left at the end of the day for thriving.

But, what is the point of success when you feel overwhelmed, fatigued and don’t have any time to spend with family and friends or doing the things that you love? Or you are grumpy and tired when you do see them!

Self care is often viewed as a luxury, high achievers are pre-programmed that they should just push through if they stand a chance at being successful. Over time this often creates stress, anxiety or illness. When you are managing a long term health issue and trying to live, work and raise a family then something often has to give. And, that something is usually self-care.

We often operate from patterns which we have created from our past life experiences and keep acting in the same ways without realising it. The first thing to do is to stop and re-calibrate, address self-care; unplug from technology, have some fun, practice mindfulness. (Download the checklist for more ideas). Then recognise the patterns that are helping you and contribute to your goals and let go of the ones that aren’t serving you anymore.

Balance and self care starts with YOU. You need to learn to focus on you, to be aware of what you want, what you don’t and to learn to love yourself well.

When you have balance, you can divide your time and energy across all areas of your life, ensuring an appropriate focus on family, learning, spirituality, and career, etc and nurturing your overall wellness. Priorities are an important part of developing a balanced life so energy can be divided in a logical way and the important things can get done.

However, when balance falters, parts of your life remain unnourished. They begin to fail, impacting other areas, and overall wellbeing. You begin to burn out and your health can suffer.

When you have a chronic illness, maintaining balance while managing your health condition can feel like an impossible task, it is easy to resort to different coping strategies just to try to manage your symptoms, hospital and doctors appointments let alone try to work and live. If you step back and look at your life, you can often see the warning signals — overeating, over-drinking, lethargy, stress and irritability they are all are signals that change is needed.

The good news is if you recognise them then you can do something about it! You have what it takes to make your life more complete. So, perhaps, most surprisingly, the crucial takeaway is not that you have the potential to put in place a routine of self-care, but that you deserve it.

Download the free self care checklist here

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