Taking Back Control Of Your Chronic Illness

Taking Back Control Of Your Chronic Illness

Taking back control of your chronic illness may feel like an uphill battle.  Generally speaking, most people have given up control of their health and wellness. Our society tends to rely on pills to make problems better when they occur rather than look for and address the underlying cause. Most people also take a passive role in their wellness only thinking about their health when something goes wrong.

Many people feel helpless, like their fate is actually beyond their control.

In contrast, the Chronically Empowered approach is a proactive approach. Even if you are struggling with a long term health condition, chronic, invisible or rare illness your fate is not predetermined by your genetics.

Chronic illnesses result from a misalignment between our genes, our environment, and our lifestyle.

While you may not be able to cure your chronic illness or get new genes, you can alter your environment and your lifestyle so that you can better manage your condition, and in some cases, even turn off those genes that are expressing themselves in a negative way.

 

Graphic showing the chronically empowered signature framework, C.A.L.M. clarity and commitments, awareness and acceptance, leaning in and letting go and management and momentum.

How Can I Start To Help Myself?

 

Taking control of your chronic illness starts with having a good attitude towards having a health condition. I’m not saying it’s always easy; when something dislocates and won’t relocate for days and days it’s hard, managing a family, school and hospital appointments on bad days is tough, being taken to court by the local authority because you are simply trying to secure an education for your teen that is too ill to get out of bed – you get the picture, it’s not all rosy.

The key to success? It begins with acceptance. You don’t have to be jumping up and down with joy that this is the situation for you but to accept that for today this is how it is – and not fight it.  You need your energy and it’s not to battle your situation 24 hours a day 7 days a week.

When you are in the depths of a new diagnosis and processing what that means for you and your future your mind naturally consumed with thoughts of illness and loss. It’s natural, I get it, I’ve been there.  It is very important to manage and process the emotional that you have.  But your world can shrink in a heartbeat… suddenly all you are talking about and reading about is your illness and condition; the worst case scenarios, the Facebook groups full of people competing to feel the worst.

It time to get real, how will this make you feel? About your life? About your future?

Arming yourself with the right information, getting educated – that’s great – but getting lost in a black hole of sadness and self pity is not. There is a fine line. Be careful.

It is about balance.

Live, re-connect to who you are and what you want. Has that changed? Great, in life the only thing that we know for certain is that things change. What do you want now?

Who are your people? Who lifts you up and brings you joy? Who drains you? Who believes you? Sometimes the people that are there for you 24/7 to give you all the love and support may be keeping you stuck – even if their help comes from a place of love. What and who do you need right now?

What can you do? A small step that can make you feel a little better? A little stronger? (no matter how small) Can you do it every day and keep the consistency going.

Can you answer some of these questions for yourself and think about how you could start to make steps today?

Mindset work and pacing has been key to me living well with EDS and CMT in my life, it’s why I am a huge advocate for it and why I help others in similar positions in my coaching practice. I know and see first hand the good it can do.

I combine a combination of wellness coaching, somatic coaching, mindset and NLP techniques to get fantastic results for my clients. To help them to move from stressed, tired and overwhelmed to become strong and empowered, energised and confident – ultimately in control of their chronic condition.

If you would like to talk about how working with a coach could help you book a call, it’s free.  It doesn’t matter if you qualify for the programme or not, during the call we can help you to get clear on what’s holding you back.

I’M IN – BOOK MY CALL

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Join The Community

The Thrive Tribe is a community of women who have chronic illness.

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. 

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!

What is somatic coaching?

What is somatic coaching?

 

This week I shared a post about what somatic coaching actually is and how it can really help you to reach your goals more quickly than just using traditional coaching methods like mindset work.

I fully believe that there is room for all approaches and I work on multiple levels with clients depending on where they are at, what they need and what is appropriate.

This includes somatic and mindset work but also working with unconscious programming and beliefs, behavioural change and emotions.  Using ALL of this is where the magic is… but ‘somatics’ is one of those buzz words right now so lets peel back the layers a bit, answer some of your questions and let you know what may actually happen in a session so that it’s not so scary.

 

What is somatics?

It’s been around since the late 18th century and comes from the Greek sōmatikos, from sōma ‘body’. The physical body as perceived from within.

Somatic techniques may be used in coaching, therapy, bodywork, psychotherapy, dance, breath work, spiritual practices and meditation.

 

 

Why take this approach?

Somatic therapy works on the hypothesis that what happens in your life is stored not only in your mind as a memory but also in your body.

By focusing on the mind and body you are taking a more comprehensive approach to healing. If you focus on mindset work alone then events may not be fully integrated and healed and old patterns may resurface.

 

How does that fit into coaching?

Somatic coaching helps people gain insights by tuning into their physical sensations and emotions, tapping into their internal experience.

Involving the body in healing and mindset modalities often leads to much deeper and faster insights and awareness.  The body holds immense wisdom outside of the mind because of its connection to your nervous system.

 

A healthy nervous system

Having trained with a somatic psychotherapist and coach using somatic work is integral to my coaching approach.

Having a healthy and balanced nervous system that can respond well to life’s stressors is at the heart of the work that I do with clients. It is important that clients understand what this means for them but also feel it. This is where somatic work comes in.

Jayne came to me recognising that she was shutting down and withdrawing from people that she cared about. She had a sense that everyone was judging her. Using somatic work we discovered that she had a protective pattern of shutting down when she felt vulnerable that went back to a period in her life when she was grieving. She would retreat to protect herself. The client not only learnt the source of her resistance she could see its innocence. She was able to resource herself now and recognise what she really needs now to feel safe in her relationships.

Building Resilience

Working within the window of tolerance somatic work allows us to really see what is happening. Many of my clients have a maladapted stess response : either stuck in fight, flight or freeze. Tuning in to this with somatic work allows us to take the first step of awareness and to build a feeling of safety to be able to begin to work with widening the window of tolerance and building resilience over time.

 

When I would use somatic

Somatic work really compliments coaching and allows me to support my clients to move stuck energy through, with or without a story.

This is importnat as it means that we don’t have to revisit the past release energy and feelings from past events.

However, It can also be used with conscious awareness using the physical sensations that arise from emotion to extract wisdom, messages or memories that exist.

 

What that might look like in a session

  • Grounding exercises
  • Helping clients explore where they feel most activated
  • Using different exercises to extract wisdom
  • Using breath, movement, or sound to release energy or move stuck energy
  • combining mindset, unconscious or self forgiveness work
  • Inner child work, meditation, visualization, emotional resourcing

 

Kate came to me with chronic health issues unsure if her health would allow her to finish her phd, but desperately wanting to try. Using somatic work alongside traditional coaching techniques helped really gain insights into what was stopping her going after her goal.  By connecting the with the sensations and emotions surrounding her goal. She had a pattern that went back to her childhood and stemmed from achievement and working hard really giving her a sense of worth particularly with one of her primary caregivers.  This pattern served her at many times in her life, in work, during stressful exam periods and to gain acceptance from others.  Now with her health this pattern was no longer serving her she couldn’t give her all in short bursts without crashing. By recognising this she could resource herself now and plan ways to do this differently. To go after her goal with ease rather then resistance.

 

The real life benefits

Clients draw connections and have insights during sessions, and leave empowered with new awareness.

They communicate better, feel freer, and are able to access more play and joy in their lives. Clients with chronic health conditions notice less symptoms.

They are clearer, calmer, less reactive to triggers and stressors and have a greater ability to relax and cope with stress.

Great right?! I often find that it can be the missing piece.

 

My journey

I have gained so much personally from guided somatic work including breathwork, inner child work, meditation and visualisation.

Doing the inner work on my patterns and peeling back the layers so that change in the present is easy has been absolute game changer in my life.  It has impacted everything.

Knowing something cognitively, and then KNOWING something because it’s an all body knowing are two very different things.

Aside from the internal growth, I am no longer easily triggered into a sympathetic nervous system response.  Something I never thought would happen as I have EDS and PoTS.  I am in tune with my emotions and my body sensations so that I give my body what it needs when it needs it without guilt.  I manage pain better because of this too.   All tangible wins.

Interested in how somatic work may support you?! Book a call to have a chat.

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Join The Community

Chronically Empowered is a community of women who have chronic illness.

You may feel like no-one understands what it’s 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.

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!

Dear Teacher… Supporting children at school with invisible illness (Part 2)

Dear Teacher… Supporting children at school with invisible illness (Part 2)

An open letter to teachers of children with invisible illness

I know that teachers want to do the best for my children with invisible illness, I can see it in their face. I’m not blaming them or shaming them, the opposite in fact, I want to help them. I wonder if they have ever asked themselves at the end of a hard day; Have I thought of everything? Could I have done more today? What can I do next? This may help to come at it from a different angle.

 

Dear Teacher…

What can you do as a teacher to help my children? Take the time to learn, I know you are experienced and may have taught many children with special needs but every child is unique, including my children. Read their notes, ask questions of us as parents, of the SENCO, Occupational Therapists and Physiotherapists involved in their care. Most importantly get to know my child and how their needs affect them in a school day and remember their condition may vary from day to day or even within the same day. Once you do get to know them then you will spot the signs of tiredness and pain much more easily, putting the adaptations and rest breaks in place will become much easier too .

We don’t expect you to know it all, as parents we learn every day, since our children’s symptoms started, we have read extensively about their conditions, we keep up to date with any developments and network with other parents. We spend the most time them and are most definitely the experts in their care. Our knowledge and personal experiences may mean we appear over fussy and protective but we fully understand the impact that bad management in childhood can have in later life, both with their bodies autonomic system and with damage to their joints.

You must accept that your teaching style or classroom organisation may have to change. These may be simple things like; allowing them 5 minutes to stretch after a long assembly before they sit down in class to work, having their coat peg in a position where they won’t be knocked by other children or sitting down for 2 or 3 minutes while you give the instructions to the class in PE before the task begins.  However it may sometimes involve carefully pacing all their activities and planning in rest breaks to avoid them falling into a nasty cycle of fatigue.  Please do not underestimate the impact that these changes can have on a child.

You will need to think ahead when planning school trips, outings, lengthy rehearsals and sports day. You have to carefully consider the impact that it may have on them including what extra support they will need in order to fully participate. When everything is planned and considered the knock on affects for their health later that day or week can be greatly minimised. We will do our utmost to tell you if something different has happened at home or before school, if they have had an injury, are in a flare or are particularly fatigued. Please make this easy to do, don’t always tell us how bad their day has been at the end of a school day when they are listening. We try so hard as parents to give them a positive self image and to be positive about their condition. While we need to know what has happened please consider what will be the best way to communicate by email, link book, text or telephone call.


 

You will need to communicate with the other professionals that are involved with our children from the lunch time assistants to other teachers, teaching assistants, the school nurse, Physiotherapists and Occupational Therapists.  We appreciate that you are all very busy but it is very difficult for us to become everyone’s PA, ensuring open lines of communication between all parties.  If you keep us regularly informed we will not keep bothering you for updates.

Please be flexible with homework, while our children are often competent enough for the tasks that you set, school is hard work for our children as they struggle to be ‘normal’ all day. This takes a lot of concentration and is very tiring. When our children get home from school, they are often exhausted and have to rest, it can be difficult to get them to do their homework. Remember that we often have Physiotherapy or Occupational Therapy to do with our children in the evenings and at the weekends and they may have attended appointments as well.  We value their school work, we do, after all our children will need to use their brains!  However we also value the importance of them being children, attending clubs such as ‘cubs’ and ‘swimming’ outside school is important too.  Keeping all the balls in the air can be hard work, requiring great skill.

It is common for children with health conditions to be affected emotionally. While my children are confident, don’t let that confidence fool you, they are fully aware of their differences. My older child chooses not to discuss this with his friends, he doesn’t want any undue attention but he understands that to manage this he has to communicate with the adults at school. This requires trust. My younger child is feeling left behind by the children in the playground, it bothers her. If these issues aren’t managed well they will become compounded and will affect their work in school. Involve the children, put the ‘child’ into a ‘child centred approach’, talk to them. We are trusting you with the most precious things in our lives to educate them and manage their care during school hours. As a teacher you are ‘responsible for the progress and development of all pupils’ and with this privilege comes great responsibility. For those 6 hours a day we rely on your knowledge of our children and your skill of being able to recognise the subtle cues about their health. If you act on what you see by pacing, simple classroom adaptations, chill out time, hydration and changing position regularly you will help them to manage their condition and ultimately improve their health. Rather than the alternative, to sink deeper into a flare, become more fatigued or to have more injuries. All that has to be better for their education?

So much time and effort is spent dealing with our children’s health it becomes important not to overlook their strengths, like all children they want to do well and they need your approval. There will be areas of the curriculum that they always find tricky, we know that, so when they are good at something please don’t forget to give them their chance to shine! In the words of Magic Johnson ‘All kids need is a little help, a little hope and somebody who believes in them.’

Missed part 1 of this post? You can find it HERE

Join The Community

Chronically Empowered is a community of women who have chronic illness.

You may feel like no-one understands what it’s 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. 

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!

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Dear Teacher… Helping Children at School with Invisible Illness (Part 1)

Dear Teacher… Helping Children at School with Invisible Illness (Part 1)

An Open Letter To Teachers of Children With Invisible Illness

This open letter to teachers first appeared on my original blog My Stripy Life back in 2015 and writing it was an emotional and cathartic experience. It was based on supporting my three children through their whole school experience up to that point. Being a mum to children with physical needs is much more emotionally draining than having those needs yourself. It’s much longer than I planned but once I started writing I has so much to say.  At this point my children had collected diagnoses hEDS (hyper mobile Ehlers Danlos Syndrome) or CMT (Charcot Marie Tooth Disease) or a combination of the two but since writing have collected many additional labels to add to those! Including ME (myalgic encephalomyelitis, POTS (postural orthostatic tachycardia syndrome) and ADHD (attention deficit hyperactivity disorder) to name just a few. It’s been a ride.

I believe that teachers and parents of many children with special educational or medical needs will relate to elements of my story. I have divided the post into two parts the first encourages teachers to look closely.

 

 

Dear teacher…

 

I appreciate how hard it is for you, I am a former teacher. Thirty children in your class; low ability, more able, English as an additional language, disadvantaged pupils, those with special needs like ADHD or autism and then my child in their own unique category, with a medical need that wears a cloak of invisibility.

In my family there is Charcot Marie Tooth disease, a peripheral neuropathy affecting the motor and sensory nerves in the arms and legs causing weakness and sensory loss, one of my 3 children has been diagnosed with this. We also have Ehlers Danlos Syndrome, a problem with the bodies connective tissue, the glue that holds you together. All of the children have symptoms of this to some extent. Ranging from bendiness to pain, fatigue, gastrointestinal problems, easy bruising, skin issues and dizziness. Both conditions are genetically passed on.

What these conditions have in common is that you can’t easily see them. Unless a child has had a dislocation and is wearing a brace or you happen to glance at them when they are ‘w’ siting or have their body in another strange position then they will look like any other child in the class.

You can’t see the orthotics in their shoes trying to align their feet and ankle bones as they walk but you may notice that as the day and week goes on their legs don’t really hold them up any more and they fall and hurt themselves more often, or that you are sending home increasing amounts of letters about injuries.

You can’t see the brace that they wear under their uniform to keep their shoulder in place but you may notice that they aren’t as strong on their dominant side when they throw a ball because of their weakness after a dislocation. You won’t see the knee supports they wear under their school trousers just to stop them aching so much by the end of a school day but you may notice them fidgeting in their seat more as the day goes on or as they try to change position when everything hurts.

You can’t see that they become dizzy on standing (sometimes even sitting), you can’t see that their blood pressure doesn’t regulate correctly, particularly after lunch when their blood is needed to digest their food. You may notice that they need to drink more or they don’t concentrate so much at certain times of the day. You can’t see their fatigue, it in itself has many different forms; where they wake up tired even though they are getting a good nights sleep, where their muscles don’t have the energy to do a simple job, or when they can’t think straight and their brain is ‘foggy’. You won’t really see my children be so physically exhausted that they are nauseous or vomit, we try hard to manage them so that it does not reach this extreme, but sometimes it does.

More often you may see them leaning on a chair, a doorway, a table because they find it hard to stand. You may see them slump over their desk for support because their body finds it tricky holding them in an upright sitting position. You may notice the dark, dark circles beneath their eyes even though they were in bed early every night this week. You might notice them get left behind when running in the playground because they can’t keep up no matter how hard they try or them choosing to play positions on the football pitch where they don’t have to run so much. When the fatigue is particularly bad you may even see a child choose not to join in with their friends because they are so tired, to choose to rest at playtime on their own.

You can’t see pain, but you may see a fidgety child who can’t seem to get comfortable in any position who rubs their joints or struggles getting up from the carpet. Or you may see them fall because their legs give way or their jaw get stuck momentarily as they yawn and it pop back into place. While all of these things are invisible at first glance, for a good teacher, one who is in tune with the needs of the children in their class, if you look closely, you will see. My children are confident, they are bright. They won’t be the ones struggling with the work in class, they are switched on to the job that needs to be done. They will be making progress on the data sheets, but it is important that their condition is never allowed to get in the way of this.

 

A child standing in a playground with a backpack

 

My children have developed many coping strategies and on the most part do not admit that they are in pain, they accept it as normality. One of my children, the one with the most needs, is super independent and determined. A quality I admire and would never like to change but I know it may seem that she doesn’t need your help. She does.

What you may be unaware of is what goes on at home for my children. The fatigue is the trickiest thing to balance the meltdowns after school, the falls. Even when the fatigue is relentless getting to sleep can be really tricky because people with hEDS or hypermobility make extra adrenaline. Once they get to sleep pain and cramp can disturb them at night adding to the fatigue the next day.

You won’t know that we still have to use a buggy for our 5 year old or a scooter so that when she is tired she can be pulled. At home we do endless physio, this is really hard when everyone is tired at the end of a school day but so important to build stamina and stay strong. You won’t see the gators tucked under the bed for stretching, the numerous gym balls dotted around the house or the designated drawer in the kitchen for therobands and hand putty. You won’t realise all of the hospital appointments that the children attend both before and after school adding to the length of their day. In half a term one of my children attended 8 hospital, GP or Physio appointments and I have had 7 lengthy phone calls with different professional involved in their care. You may not be aware how important stamina is for our children, taking part in sports crucial. Please don’t think that because they worked hard and got man of the match playing football for the school team that they are better now. What you don’t see is the pay off for that reward, two days of severe pain and a week off of school recovering because symptoms have flared up. Is it all worth it? Yes. They are children and these memories are important. Will we stop them attending a party at the weekend, playing football or even climbing trees at Go Ape? No. We plan, pace, limit the risks, brace where we need to and not relax for a minute but we will let them be children, have a go, sometimes fail and get up and try again and be prepared for the pay off later.

What you may not know is that as these conditions are genetic one of the parents will be affected. Usually painting on their smile and pretending that the pain, fatigue and autonomic dysfunction as well as daily dislocations and subluxations just aren’t happening. After all there isn’t time for all of that!  Living with the conditions ourselves we understand the struggle to be ‘normal’ and we know that what they are experiencing is real.  Remember, the most powerful thing you can say to a child with an invisible illness is… ‘I believe you’.

Want to read part two of this post? You can find it HERE

Join The Community

Chronically Empowered is a community of women who have chronic illness.

You may feel like no-one understands what it’s 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. 

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!

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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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Join The Community

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!

An Open Letter To My Charcot Marie Tooth Disease

An Open Letter To My Charcot Marie Tooth Disease

Writing for me has always been a really great way to process my feelings around my chronic conditions and diagnoses’. Cathartic, cleansing, curative even.

One exercise that I often do with clients is to encourage them to write a letter to their condition. To get it all out on to paper, perhaps in a journal. It can help us manage stress by understanding what’s going on in our minds. Sometimes we feel anxious about things or we’re feeling upset and sad.

Writing something down can be a healthy and intimate way to deal with your emotions about your condition and what that means. It can help you reflect back and see how far you have come and the skills that you have gained, the support that you have around you and the positive choices that you have made while managing your health needs.

It also makes it easier to see possibilities and choices going forwards.

 

 

Some reflection questions

 

What have I learned?

Who are my people?

Given the current circumstances, what will serve me best now?

What actionable steps can I take from this place to move me forward?

 

 

blurred image of a woman journaling with text

 

Today I am sharing a letter I wrote specifically to my neuromuscular condition Charcot Marie Tooth Disease.

 

 

Dear CMT…

When you first came into my life it was hard.  Those were the darkest and longest two years of my life. I got up every morning and got on with the day to day but inside I was crying. The words progressive, neurological, hereditary, they shook me to my core.  Questions spiralled around my mind; Why me? What would it mean for the future? For my little boy? Would I be able to have more children? Would it be fair to try?

In the beginning you stole my career.  I couldn’t manage to work. I would dislocate as the bed covers lightly brushed across my knee, I couldn’t walk on grass without falling and having more dislocations, you made family days out impossible, you made life hard.  You put me through two surgeries in a very short space of time and I was told that I would be a wheelchair user by my mid 30’s. Not solely your fault I know now that EDS had a part to play too but I didn’t know her name so you bore the brunt. It was tough.

I kept smiling on the outside but I inside I hated you.

We explored all of the options for expanding our family, we thought about adoption, considered an egg donor but preimplantation genetic diagnosis was the closest that we came to seriously considering a plan other than Mother Nature, but who are you to make our choice.

Two years after I first learnt your name our second baby came into the world, naturally.  We were happy.  I was meant to be a mother and it felt good.  You weren’t done though we’re you?  Making me go through major surgery with a young baby and a toddler.  This time I never let it get me down, you weren’t going to beat me anymore, I had decided that I was going to win the fight.

So I researched all about you, I called your bluff. I took advice from the experts and I got stronger physically. I fell in love with Pilates. Learnt to to love Physiotherapy and slowly began to walk a little every day.

Strength for me wasn’t just a physical pursuit it came from within.

As time passed you have taught me so much.   have taught me perseverance and patience, when things are tough they will improve. You have taught me think out of the box and find solutions when problems present themselves, the rewards can be so much more when you work harder for something. You have taught me to value what is dear to me and treasure it with all of my heart. And you have taught me not to judge others because you never know their story. Self compassion has become my medicine. You have made me a better person.

You weren’t done with us though we’re you? You didn’t want to give us a break? When our daughter was born it was obvious that you were part of her too. We were formally told after she had to endure painful Nerve Conduction Studies just before she was two. This time I didn’t hate you but you made me sad. So sad that I couldn’t speak for a week, so sad that the food just went round and round in my mouth till I finally swallowed it down.

Why her?

Then EDS formally came into the picture too, I didn’t grieve this time, you had taught me to cope. Our beautiful, determined daughter had taught us joy, we knew how to paint our own rainbows, we are a unit, strong, together and we are armed.

We understand what we are dealing with so we can prepare for her future. We won’t let  you catch her unawares in her 20’s. We can fight your symptoms because we know the damage that you can do first hand. She will be her strongest best self.

You have taught me to fight for that care for her, for all of us, to practice gratitude, to negotiate, to say thank you when people do their jobs well, to be assertive when they don’t, to learn the law, our rights.

You have taught me that strength does not mean that I have to fight every day, fighting just adds another layer of resistance that makes everything harder. My strength is deep within me now.  A knowing. A heartbeat. My strength also comes from being vulnerable and letting my guard down, without you I may not have learned that was safe.  My vulnerabilities are so welcome now.

I am empowered.

I thank you for that.

You have also taught me to give back. I have been on a journey through diagnosis to the point where I am now and I survived. I am in a much better place physically, mentally and emotionally than before I ever knew your name, you have triggered that change in me.  I am stronger. I am thriving… even with you in my life.  I now use this to help others who may just be at the start of their journey, perhaps with a condition that has come into their world or when one of life’s storms have hit and it has knocked the wind from their sails. Because we are all stronger together.

Like any relationship I have got to know you and that has been key to living well with you.  But most importantly I now know myself : what I love, what I value, what brings me joy, who I adore, whose energy I love to be around and what I want for my future.

I can’t change my condition but the choices and decisions around the rest of my life are mine, I get to choose how I react to the situations around my health. That power is mine and you can not take that away. My focus is not on what I can’t do but what I can and how I can adapt things to be able to still take part, if I want to. My out of the box thinking has expanded ten fold – and I love that you have given that to me.

I’m sure that you will always try to test the boundaries but I am prepared for our future together.

Bring it on.

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DO YOU WANT TO BE PART OF A COMMUNITY WHERE YOU FEEL SEEN AND HEARD?

Join the Chronically Empowered Women Facebook Group.  It is a safe place for women with long term, chronic illness or disability (or if your life has been touched by a chronic health condition, perhaps you are a carer or mum to a person with health issues!)

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. And, about recognising your own unique superpowers!

If you are curious about coaching, please fill out the contact form and I will be in touch.

Sarah 🙂

 

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