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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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

 

6 Top Tips To Manage Chronic Illness Crashes

6 Top Tips To Manage Chronic Illness Crashes

When you live with chronic illness ‘crashes’ are inevitable no matter how hard you try to avoid them.

Getting the balance between doing too much or too little is like walking a tightrope.  Mostly for me a crash comes when I do too much for too long.  I’m not stupid and I have lived with this for long enough to recognise the subtle signs that my body gives me, trying to warn me to slow down, to take a breath, to re-charge.  However more often than not I ignore them or think that just this once it will be OK if I push through.

Over the years my ability to manage my crashes has improved but every so often my body will throw me a curve ball.  It’s like it trying to prove who is really running the show.

I’ve learnt that the only way to avoid a monumental crash is respect the boss, to listen to my body and treat it with respect.  To manage, to pace and to keep all the plates spinning delicately in the air.

 

How the holiday Season may effect your chronic illness symptoms

The holiday season throws another element into the mix, although many of us will be experiencing quieter Christmas celebrations this year due to the COVID pandemic. Other factors may have an effect on how well you manage your symptoms and how you feel.

  • Routine. Extra time off, late nights or lay ins, even different meal times may impact your symptoms.
  • Sleep. Your sleep pattern may alter because of those late nights and lazy mornings but pay attention to the other factors may also alter your sleep during the holiday season, including the food you eat, alcohol, routine and how much energy you use during the day.
  • Food. The food that you eat may be different to usual over the holiday period, this can affect symptoms
  • Alcohol. Now I’m not saying that you shouldn’t raise a glass with you Turkey this Christmas (I’m not the alcohol police!) but its really important to be aware of the medications that you take and the possible interactions.  Also how it affects your sleep, your mood and your symptoms.
  • Travel/ socialising with friends. Depending where you are in the world this year you may be allowed to meet up with family and that may involve travelling, which can make you more tired.  Coupled with socialising and catching up with family and friends this can take its toll on how you feel.

6 Signs that a chronic illness crash may be coming

Here are the top 5 ways to spot a crash is on its way and try to do something about it before it floors you.  Hopefully by recognising the signs and acting on them a crash can be lessened or avoided.

  1. A really big appetite.  For a few days before a crash hits it is like my body needs extra fuel, I often crave sweet, empty carbs.
  2. Being teary.  From crying at Countryfile’s stories promoting the big Ramble for Children in Need watching the Undateables (I love a happy ending) to welling up when I have to ask my kids to do their HW for the 11th time.
  3. Brain fog. Why did I want to put the milk away in the oven?  I have to think extra hard when I’m doing something as I lose my train of thought really quickly.  Focussing on reading is impossible and I forget why I have walked into a room in the first place.
  4. Being cold.  I can’t regulate my body temperature at the best of times but when a crash is coming I’m cold all the time.
  5. Breathlessness.  From walking to the kitchen to pop the kettle on to sitting and having a conversation.
  6. Poor sleep. When a crash is coming I become tired but wired.

6 Things to do to minimise a chronic illness crash

  1. Rest. Simple to say but impossible to actually put into practice when you have demands placed on you from family, friends, work or study. Resting completely it is the best way to stop the crash getting worse. Rest now.
  2. Act immediately. When you know (and in my case finally admit to yourself) that a crash is coming you have to stop. The sooner the act the easier that it is to minimise the fallout. I have been at my poorliest when I have pushed and pushed through.
  3. Delegate. You are not invincible and not everything is ‘your job’. My problem is that my family don’t always do the things that I ask them to do, a) to my standard, or, b) the second I ask them to do it – which just stresses me out! but I have to learn that the house will not fall down and I will become well much quicker if I let them help. And it’s never a bad idea to organise my lazy kids with some chores 😉
  4. Prepare. Think ahead – A little time spent planning things in advance can save heaps of energy later. From online shopping to planning your tasks and energy over a week. If you have something unavoidable to do plan good rest before and after.
  5. Ask for help. There is nothing wrong with asking for help, yet it is the thing I struggle the most with. Start with those people that you know best and that love you dearly. You might be surprised at how willing they are to lend a hand – I always am. From doing the school run for you or making dinner to doing the ironing. Think about what will help you the most and if people offer without you having to ask, say YES!!!
  6. Pace yourself. To get over a crash pacing is key and pulling back from non essential activities will help you to recover more quickly. I try to look ahead for a few weeks and plan my energy levels: I never have two busy days in a row, I plan plenty of time to recover from activities, I cancel non-essential activities or appointments and I only socialise with people that make my heart jump or if it’s something I’m really looking forward to.

I hope it helps you to recognise and act on the warning signs that a crash may be brewing, and to get back to normal more quickly (whatever normal is)!

 

If you enjoyed this post you may like…

Surviving a crash if you have a chronic a chronic illness or The signs or carer burnout and how to fix them.

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.

The 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!

 

Lessons I’ve Learnt To Help Me Live With My Chronic Illness Long Term

Lessons I’ve Learnt To Help Me Live With My Chronic Illness Long Term

Chronic illness has been a part of my life for as long as I can remember.

When I was diagnosed with my first big diagnosis in my 30’s, Charcot Marie Tooth Disease (side note – it’s nothing to do with teeth) it floored me.  I just second guessed everything and constantly re-examined my life and my future.  Life spiralled. Outwardly I was still that same person but internally my mind was a mush, like a swan on the surface but frantically paddling underneath just to try to stay afloat.  I lived… but in a blur.  My career in teaching was over and I constantly questioned, ‘Who was I now?’ as so much of who I was was bound up in what I did.

It was a tough time.

Slowly I learnt, I trusted, I talked, I became empowered and I focussed on what I could do not what I couldn’t. I found work arounds for things to make my life easier.  I began to own my life again.

Ultimately, I changed my mindset.

Most importantly and life-changingly, I learned how to not let my chronic illness, which had been the focus for so many years, become my story – the story of someone who shirked away from her own life because she was diagnosed with this stuff and the world now owed her something for giving her that to carry. I looked forward, I focussed on what I wanted and I went out there and got it.

No more excuses.

I’ve learnt a few lessons along the way that I’d love to share with you, this being one of them, you have to focus on where you are going not where you have come from.

 

 

7 Lessons that I have learnt

 

1. Learn about your illness so you feel empowered and know how to help yourself. This can help you in doctors appointments advocating for yourself and discussing treatment options. It also helps you to manage and understand your symptoms for yourself and communicate what you need to to family, friends or colleagues without feeling awkward.

2. Beware of social media groups. There are some great people online, I have connected and built friendships with fabulous people from all over the world that I have never met. But there are also people who want to compete, if you ask a question seeking support, their symptoms will always be worse, their life harder.  It’s really important for them to let everybody know just how bad everything is for them. Be careful of falling down this rabbit hole. You can’t fix everybody.

3. Surround yourself by people that care. This sounds simple but your circle may get smaller when you are diagnosed with a chronic illness, that’s just how it is. The people that you once had wild nights out with will drop off the radar when you aren’t showing up anymore. You need people in your life that will listen and support you but also will talk about other stuff, make you laugh, have fun. There is so much more to life than your diagnosis and you need people that will help you keep things in perspective.

4. Practice self care. This means eat well, have a good sleep routine, get fresh air, switch off, move, laugh and nourish your soul. 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, learn to love yourself well and ditch the idea that self care is selfish. It’s not. 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.

5. Set boundries. Boundries are super important when you have a chronic illness. Firstly it is important to recognise anything that may trigger a flare or make symptoms worse and anticipate them. You need to be clear about your needs and communicate them to the people around you, your friends and family are not experiencing your illness as you are and it is your responsibility to let them know how you feel and ask for help if you need it. This includes saying no to things if you need to. It is about giving yourself permission to do what is best for you.

6. Focus on what is good in your life. The saying ‘where your attention goes your energy flows’ is very true and it is important to remember it. When you are surrounded by doctors appointments and feel rubbish it that understandably where your focus is, I get it. But, the more that you focus on how rough things are, the worse they get. Think about what is good in your life, what you are good at, what you enjoy and do more of it. Your symptoms may not improve but the way that you feel about your diagnosis and your life will.

7. Look forward. Focusing on how things were, the job you had, the plans you made that seem unachievable now, will not help. Stop. Start from where you are today. What do you want? Get specific, what do you really want in your life now? In three months time, six months, three years? What is important to you? What do you really value? If you think about it it probably isn’t that high flying job that payed mega bucks but you hated, where you were burnt out and never saw your friends, even for coffee. Focus on the small things that will help you reach your bigger goals and start now. No more excuses.

 

Working with a coach can be really beneficial to help you on this journey by identifying the roadblocks that are stopping you from achieving your desired outcomes. Beyond this, NLP lets us delve deeper and identify the root cause of these roadblocks, which when removed, result in a more profound transformation. Do you want to chat about how positive mindset coaching could impact your life? Book a call.

Join the The Thrive Tribe on Facebook – A brand new private group where I will share more personal tips about how to live well with chronic illness and there will be weekly challenges to help you think about your life in a different way.

Surviving a Crash When You Have a Chronic Illness

Surviving a Crash When You Have a Chronic Illness

When you live with chronic illness ‘crashes’ are inevitable no matter how hard you try to avoid them.

Getting the balance between doing too much or too little is like walking a tightrope.  Mostly for me a crash comes when I do too much for too long.  I’m not stupid and I have lived with this for long enough to recognise the subtle signs that my body gives me, trying to warn me to slow down, to take a breath, to re-charge.  However more often than not I ignore them.

Why do I do this?!? Is it a conscious decision? To be completely honest I’m not sure. I really should know better, burying my head in the sand and pretending that everything is OK will not make this go away. The only way to avoid a monumental crash is to listen to my body and treat it with respect. To manage, to pace and to keep all the plates spinning delicately in the air.

The reality is that this doesn’t always happen.

 

6 Signs that a crash is coming

 

Here are the top 5 ways to spot a crash is on its way and try to do something about it before it floors you. Hopefully by recognising the signs and acting on them a crash can be lessened or avoided.

  1. A really big appetite.  For a few days before a crash hits it is like my body needs extra fuel, I often crave sweet, empty carbs.
  2. Being teary.  From crying at Countryfile’s stories promoting the big Ramble for Children in Need watching the Undateables (I love a happy ending) to welling up when I have to ask my kids to do their H.W. for the 11th time.
  3. Brain fog. Why did I want to put the milk away in the oven?  I have to think extra hard when I’m doing something as I lose my train of thought really quickly.  Focusing on reading is impossible and I forget why I have walked into a room in the first place.
  4. Being cold.  I can’t regulate my body temperature at the best of times but when a crash is coming I’m cold all the time.
  5.  Breathlessness.  From walking to the kitchen to pop the kettle on to sitting and having a conversation.
  6. Poor sleep. When a crash is coming I become tired but wired.

6 Things to do to minimise a crash

  1. Rest. Simple to say but impossible to actually put into practice when you have demands placed on you from family, friends, work or study. Resting completely it is the best way to stop the crash getting worse. Rest now.
  2. Act immediately. When you know (and in my case finally admit to yourself) that a crash is coming you have to stop. The sooner the act the easier that it is to minimise the fallout. I have been at my poorliest when I have pushed and pushed through.
  3. Delegate. You are not invincible and not everything is ‘your job’. My problem is that my family don’t always do the things that I ask them to do a) to my standard, or, b) the second I ask them to do it – which just stresses me out! but I have to learn that the house will not fall down and I will become well much quicker if I let them help. And it’s never a bad idea to organise my lazy kids with some chores 😉
  4. Prepare. Think ahead – A little time spent planning things in advance can save heaps of energy later. From online shopping to planning your tasks and energy over a week. If you have something unavoidable to do plan good rest before and after.
  5. Ask for help. There is nothing wrong with asking for help, yet it is the thing I struggle the most with. Start with those people that you know best and that love you dearly. You might be surprised at how willing they are to lend a hand – I always am. From doing the school run for you or making dinner to doing the ironing. Think about what will help you the most and if people offer without you having to ask, say YES!!!
  6. Pace yourself. To get over a crash pacing is key and pulling back from non essential activities will help you to recover more quickly. I try to look ahead for a few weeks and plan my energy levels: I never have two busy days in a row, I plan plenty of time to recover from activities, I cancel non-essential activities or appointments and I only socialise with people that make my heart jump or if it’s something I’m really looking forward to.

I hope it helps you to recognise and act on the warning signs that a crash may be brewing, and to get back to normal more quickly (whatever normal is)!

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