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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Managing Chronic Pain – 4 Things To Stop Today

Managing Chronic Pain – 4 Things To Stop Today

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!

How To Cope When You Are Overwhelmed By Your Chronic Illness Diagnosis

How To Cope When You Are Overwhelmed By Your Chronic Illness Diagnosis

Why do you feel overwhelmed when you have a chronic health condition

Dealing with a chronic illness diagnosis can be overwhelming, leaving you feeling lost, frustrated, and even powerless. Chronic illnesses can cause physical and emotional challenges, which may lead to you feeling overwhelmed and even suffer burnout over time.

Coping with a chronic illness diagnosis is an ongoing process, and it’s essential to learn how to manage your emotions effectively and think about how you react and respond to the curve balls life throws at you.

Even after you’ve accepted your diagnosis, the uncertainty about your future and the unpredictability of day-to-day life is a lot to deal with. It doesn’t take much to push someone with a chronic illness into overwhelm and burnout. Illness can overwhelm you socially, cognitively, emotionally, and physically — taking a massive toll.

Maybe most days you manage okay, but there are times when you may go from being overwhelmed-but-functioning to completely floored by your condition and everything else life throws at you.

 

Things that may cause overwhelm when you have a chronic illness

Overwhelming factors may be big or small, they may happen all at once or creep up on you over time:

  • A new diagnosis
  • A change in symptoms
  • starting, stopping or changing medications
  • Visiting a new doctor
  • a set back to treatment
  • really long waiting times for appointments
  • Losing your ability to carry out certain tasks
  • chronic pain
  • financial stress
  • financial stress
  • losing a job or having to change job/ profession
  • having to cancel plans

I know first hand how hard it is to mange appointments, symptoms, therapies, eat a healthy diet, get as much physical activity as you can, avoid negative coping mechanisms like alcohol, exploring the right stress-relief activities like meditation, keep up to date with new treatments or simply ask for help when you need it and stay in touch with family and friends. It’s a lot – then managing it all for my kids added another layer of overwhelm to the mix.

Doing it ALL can be really overwhelming.

As a life coach, I’m here to help you navigate through the stages of burnout and offer tips on how to cope when you feel overwhelmed by your chronic illness diagnosis.

 

Let’s understand acute vs. chronic stress

It’s essential to understand the difference between acute stress and chronic stress.

Acute stress is a type of stress that happens in response to an immediate threat or danger. For example, if you’re walking in the park and a dog starts chasing you, your body will go into “fight or flight” mode and release stress hormones like adrenaline and cortisol. This type of stress is helpful in the short term because it helps you react quickly to danger.

Chronic stress, on the other hand, is a type of stress that happens over a long period of time, often months or years. This type of stress can be caused by ongoing problems like financial difficulties, relationship issues, or work stress or a chronic health problem. Chronic stress can be harmful to your health because it can lead to high levels of stress hormones in your body over an extended period of time. This can cause negative health effects like anxiety, depression, heart disease, and digestive problems. A double whammy. Your stress about your health over time and if chronic can further affect your health!

 

The Stages of Overwhelm

This graphic shows really well.  As the demands and pressures increase, so does performance, but there is a sweet spot where you are performing at your best.  Some people describe this as flow state.

As demand and pressures continue to increase over time performance can decrease and you can slip into overload or even burnout.

It is so easy to tip from being in you best performance zone in to feeling overwhelmed by your chronic illness.  One minute you feel like you are winning, you have it all going on.  Spinning all the plates.  The next there are just too many plates to keep spinning.  You haven’t got the energy to keep them all going.

There is a big difference between functional overload, where you are overwhelmed but functioning and dysfunctional overload, where you just feel floored by everything; your condition, life, all the things.  As you start to move down the curve, the demands and pressures are still there, maybe they are increasing or maybe there is just no let up from those demands, you will move from functional overload into dysfunctional overload and this is where burnout can occur.

Once you know where you are on this curve then you are better placed to apply interventions to help you perform at a sustainable level.

 

Symptoms can be wake up calls

When I started work as a teacher full time my usual coping mechanisms just didn’t work.  After a long summer break the autumn term usually went OK, I could keep going pretty well but was often ill over the Christmas break as my body was screaming at me with symptoms by the time we broke for the Christmas holidays. Despite resting, I would always start the Spring term tired and it felt like a hard slog to get to half term. This is when I started getting more and more illnesses.

I felt like I was always driving around with my body’s check engine light on, convincing myself that I would be OK.

I distinctly remember having two or three weeks off of work for things that the GP could never put his finger on ‘glandular fever like illness’ for example or ‘fatigue’.  I was bloody exhausted all the time.  I would rest, reset and go again. Constantly swinging from one end of the curve to another and each time reaching overload more quickly.  What I was doing every time was ignoring the symptoms until I got sick or was completely overwhelmed by my symptoms and couldn’t carry on.

It won’t come as a surprise to you that I eventually left the teaching profession.  A combination of diagnoses, fatigue, ever increasing and more serious symptoms and overwhelm.

It was way after I left work, was diagnosed with multiple chronic health conditions and had settled into life as a disabled mum that a big shift came in the way I lived and experienced my symptoms, when I started to see them not as an enemy to fight or override but as signals alerting me to overstretch.

If a fuel warning light comes on on a car you don’t just drive it regardless. You stop and refuel. We need to take a similar approach to our symptoms and energy.

Once we learn to listen to our body, then we can develop better ways of working towards better performance. This is so important particularly if you have a chronic health condition. Knowing what is normal for you, what symptoms and signs come when you are pushing too much and slipping into overwhelm really help you to recognise them. To stop.  And then choose what you want to do next.  Do you want to keep pushing or is there another choice?

There was wisdom in my body and what it was telling me. Once I started to listen to it overwhelm started to lose its grip.

 

Signs of Overwhelm

It’s important to recognise the signs of overwhelm so that you can take steps to address them. Here are some common signs of long term chronic stress, I have split them into physical, emotional and behavioural symptoms –

Physical:

  • Tired and drained
  • Low immunity
  • Changes in appetite
  • Changes in sleep habits
  • Persistent headaches or dizziness
  • Muscle pain and tension
  • Stomach problems
  • Sexual problems

Emotional:

  • Feeling helpless
  • Feeling detached from life
  • Loss of motivation
  • Sense of failure/ self doubt
  • Decreased satisfaction in life
  • Increased negative outlook
  • Feeling overwhelmed and avoiding small stressors that will usually feel manageable

Behavioural:

  • Withdrawn from responsibilities
  • Isolated from others
  • Procrastinating
  • Getting agitated with others
  • Avoiding work
  • Lack of concentration
  • Problems switching off even when exhausted
  • Increased dependence on addictive behaviours such as smoking, drinking or over eating

 

Coping with Overwhelm from your chronic illness

If you’re feeling overwhelmed or experiencing burnout, there are several things you can do to help manage your emotions and reactions. All of these things are great when you are feeling overwhelmed:

  1. Practice self-care: Get enough sleep, eating a healthy diet, and exercising regularly. These self-care practices can help reduce stress and promote a sense of well-being.
  2. Seek support: Reach out to friends and family members for support, or consider joining a support group for people with similar chronic illnesses.  Hey, even hire a coach!
  3. Manage your expectations: Set realistic expectations for yourself, and don’t try to do too much at once. Break tasks down into smaller, more manageable pieces.
  4. Practice mindfulness: Try mindfulness techniques such as meditation to help reduce stress and anxiety and help you to be more present
  5. Rest: Take breaks when you need them. Allow yourself time to rest and recharge.
  6. Practice gratitude: Focus on the things you’re grateful for in your life, even if they’re small. This can help shift your focus from negative emotions to positive ones.
  7. Focus on your strengths: this helps you to build inner resilience, it will help to lower stress levels.
  8. Breathe: from simple breathwork techniques to more focussed conscious connected breathwork – this can help to lower cortisol levels and help you feel less stress.
  9. Journal your feelings: Use a journal to break down all the overwhelming thoughts and feelings.  It is really cathartic to get it all out onto a page.
  10. Mind map: all the things that you have to do, like journaling it helps to get it all out onto a page from there you can work out what is important, what isn’t and if anything can be ditched or delegated.
  11. Do one thing: When things feel overwhelming start small, you don’t have to conquer the mountain today just take the next logical step.
  12. Get organised: Keep all of your medical appointment letters, prescriptions and important documents in one place. And keep a diary… appointments are cancelled and changed, with everything in one place  you can stay on track.

 

Can you think of which ones you could introduce as a regular practice to prevent overwhelm in the first place?

Imagine taking regular rests, having a great support network, a positive mindset born out a daily gratitude and journaling practice?  Arriving at your medical appointments super chilled and organised with a binder full of all your reports and letters, just in case.  Feels better already, right?

 

If you liked this post please comment below.

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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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