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 –


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


  • 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


  • 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?


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When I checked in to the rehab ward at Stanmore hospital nearly nine years ago pacing was my enemy.  I was resistant beyond belief and had no idea how it would fit into my life let alone the impact that it would have on managing my chronic conditions.

This extract is taken from a blog post back then:

“How would I ever be able to pace my days when I had so much to do and so many people relying on me?  How could stretching while standing in a queue in a shop help alleviate pain later on?  We had to colour code all our activities over a week, green – easy, amber – a challenge and red – hard work. The task was to spread out our ‘red’ activities over a day, with no two red activities next to each other.  The principle was fantastic but all my red activities were between 3pm and 7pm when the children are home from school and we do homework, reading, dinner, clubs, bath and bed.  The whole evening becoming a blot of red, not because each individual activity was hard in isolation but the sheer amount in a small space of time. How could I spread them out? Sorry kids no dinner tonight, mummy can’t have another red activity!“

Now pacing is something that slots naturally into my days without me even having to think about it. It is as natural to me as brushing my teeth in the morning or making a cup of tea.  In fact sometimes I forget my cuppa… I never forget to pace.  It is a non-negotiable when it comes to the management of my chronic conditions.

I’ve lost the martyr role where I believed that I was responsible for everything and everyone… and then felt bad about it.  Everyone in our family is an empowered individual that can achieve anything that they put their mind to.

I have retrained and have a career that I have built solely around my health condition, helping others manage theirs – BONUS!

And even my working weeks have regular down times and schedule that works to three weeks on one week off pattern, to recharge.

And today, knowing that I am tired I am binge watching Netflix in-between writing a blog post and enjoying the garden and fresh air because that is what my body and energy needs now.  With no guilt.

But the real contrast is in the things that I fill my days with. Back then it was FULL of things that I had to do or should do. Self-imposed constraints placed on myself like punishments. That if I allowed time for fun and play it would be weak.

Now fun things are an absolute priority in my life. Scheduled in my diary like appointments so that they can no be missed. Time away with the girls, dinner out, breakfast with my mum, a spa session with my daughter. They refuel me and fill me full of positive energy. The roots of joy and purpose firmly planted once more in my life.

I’d lost who I was for a bit and with that EVERYTHING felt hard. Including pacing.

Remember, pacing isn’t just about doing less it was about spreading things out over the day so that I can achieve more. In the process I stopped feeding into that boom bust cycle where I would inevitably push, push, push CRASH! Freeing up space and energy for things that light me up and re-fill that energy bucket finally getting the balance.

You may also want to think about pacing to help you manage your condition if:

  • You often push through pain, symptoms or tiredness
  • When you have energy try to get everything done then pay for it later
  • Are scared that you will flare your symptoms so do less


the top three things that help me manage my chronic illness long term

the top three things that help me manage my chronic illness long term




There was a lightening bolt moment when this changed for me. Outside Great Ormond Street Hospital, on the pavement on Guildford Place.

We had just had an appointment with a top paediatric consultant as Rubie was still not walking at 18 months and when she pulled to standing (she was really trying), her feet would often be facing the wrong way.  She was wobbly too.  Her physio agreed, this appointment was a good call.

But the outcome that day – she’s within normal limits.

That’s when the switch occurred.

No more stories.  No more doubts or fears. Just this deep inner knowing and trust in myself.  I became empowered in that moment and took control of the situation and the narrative around it.  This journey wasn’t going to be without its difficulties, this very appointment had proved that, but it was my job to show her how to live her life well and advocate for everything that she needs with confidence and humility.

And from that day forward that is what I have done. No more martyr, why us or victim playing out. Just honesty when it’s hard and and making sure that I keep doing the work around my thoughts so that my past is not projected on to the kids or the future.

Mindset is something I always work on.  And has been a game changer when managing my chronic illnesses.

It is super powerful for deep thinkers to question their thoughts, who often think as a way to avoid actually feeling. But equally it can be really powerful for people who get lost in their emotions.

Both of these extremes are often seen in patients that are recently diagnosed or dealing with the overwhelm of symptoms, so mindset work is a win, win.


Mindset work can help you in any area of your life but is fantastic when:

  • where you have judgements that limiting you
  • where your inner dialogue is taking you out of the game and causing you to feel stressed
  • when you get into habits of blaming
  • excuses or complaining
  • if you are a worrier and get stuck in negative thinking

(This photo was taken on the very pavement outside Great Ormond Street Hospital, on Guildford Place, nearly 11 years after that first appointment.  Directly opposite is a cute little Italian that we try to visit every time we have an appointment at GOSH. Even though at the time that appointment felt like a fail, it was the best thing that ever happened because it changed how we showed up for her and for ourselves every day since. There is learning in everything people.)






Number three on my list has been very hard to choose. There are many other things that I feel have been important to me : acceptance has been at the heart of everything and absolutely deserves a mention here, as does self-compassion.  The way I treat myself has been so important.  And while encompassing everything that I do and how I show up in the world I really want to show you three clear management strategies.

My relationship to pain and my body… another biggy, worth exploring another day for sure but this week I have literally spent every single day doing my number three in some shape or form for me or one of the children.




On Monday this began on our way to Great Ormond Street hospital where I spent (what felt like the whole journey) trying to sort out two repeat prescriptions.  One that had not been processed by the POD (prescription ordering, direct) service, despite a confirmation email and the other that had been rejected by the GP due to a med review, but no one had told us until we went to collect it from the pharmacy and then chased it!

Followed by a very lengthy clinic appointment where I tried to tie up National and local services for the year ahead and get everything in place for health and education that needed to be before we left.



Tuesday saw booking of COVID jabs (straight forward) and flu jabs, not so).  Despite my son and I falling under the category ‘complex neurological disorder’ on the NHS website the receptionist cannot authorise and left a note for the GP to sort out.  I assumed this would be fine as we were always eligible when we lived in London.

Then I get a call from my daughter’s best friend, she is really upset that Rubs has been stopped by a teacher using the lift in school, which they are authorised to do) and instead of asking her why or being curious about what could be going on for her Just point blank tells her that she is not disabled.   When she explains that she is and invites him to look at her records he insists that she is not disabled.  An argument ensues resulting in, ‘well you’re not visibly disabled… it must be mental’.

My daughter and her amazing side kick handle it perfectly, report the teacher and reinstate the lift pass and telephone me enroute to their next lesson!! Advocacy in action, right there.

In my opinion an opportunity missed for the teacher because both girls are extremely bright and articulate young ladies, and he actually could have gained a lot from the interaction.



Fast forward to Wednesday morning on the telephone to school advocating on my daughter’s behalf.

What I know is important to me is for her to feel seen and heard and she didn’t in her interaction yesterday and that is what frustrated her the most.  That when she tried to explain her teacher chose not to listen, this is what upset her the most.  I needed to communicate that for her.

All children people with invisible disabilities should be treated respectfully and not have to prove that they deserve to use the accommodations that have been put in place to support them, or that they have to look a certain way either.

I could have a heart condition, chronic pain, renal failure, myalgic encephalomyelitis.  I could be using splints on my legs, or a prosthetic limb… but under my trousers you could not see.  Does any of this mean that I do not have a disability.

Ironic, that at GOSH the day before the team were praising her for using the accommodations that were put in place for her at school, despite her disability not being visible often.  And the very next day she was challenged for doing so.

In any situation I look at what can be learned.

I will continue to give Rubie the tools to advocate for herself. The language, the right people to talk to and play out the ‘what to do if people don’t listen’ scenarios with her also.

I believe that there a huge opportunity here to educate on what an invisible disability is and how students can better be supported in school by all staff and education for students.  Default should be set to curiosity not judgement.

It also highlights a conversation that needs to be had around sharing of pupil records amongst staff, how school ensure that these are read and procedures for using the lift.  This is especially important as this was one of her teachers and he has access to and should have read her records.

I have confidence that the school will follow these points up, and if not, I will be sure to as it will be of benefit to all the students at her school.

But I also secretly wish that I didn’t have to.



My Thursday morning has been spend so far taking Rubie for a blood test and chasing the flu jabs at the GP.  They have decided that we don’t qualify, with no feedback.  So now I will have to put back on my advocation pants and show the GP that we do and which criteria that we both fall under and why.

A 2 min google search in the waiting room with the names of our conditions pulled up numerous government websites to do just that! but it will probably mean another 30 min phone call explaining and educating tomorrow morning to actually sort it all out – which is a bloody waste of a GP’s valuable time… and mine.



I have a foot and ankle clinic appointment following last year’s surgery. But mostly I hope to get a follow up from school saying that they will review policy, have planned an extensive education programme around invisible disabilities for staff and students and our flu jabs can be booked without having to prove our medical conditions.


My Hope

I dream of a world where you don’t have to prove and re-prove your disability or health condition to those that actually have your records and should understand and be there to support you.

Until then, I hope that the people on the other end of the telephone lines, manning reception desks, booking appointments, teaching my children – just listen with and open mind and curiosity.  And when mistakes are made, they are helpful and do their best to help to rectify them.

We are all human and call it wrong sometimes, but it only gets better when we admit that step up and learn from it.

That would actually change everything, until then we need to learn to step up for ourselves and those we love to help to manage our health conditions and needs.



As of writing this Rubie’s school have dealt with everything perfectly (as I imagined that they would). Communication as always is clear and open.  Rubie is happy and it seems that all of my points have been considered and followed up and the SENCO is calling this week to discuss further.

As humans we can learn from everything and organisations are no different.  If they choose to it makes them stronger, more resilient, autonomous.

My GP surgery has refused to provide me or Alf with the Flu vaccination three times now despite explaining the criteria that we fall under clearly.

Last night after getting of the telephone I did think that I would just pay for it, it would be easier, right?!

But this morning when I woke I thought how can I publish a post about advocating and then take the easy option. I have now downloaded the proof from leading charitable organisations the NHS website, (including the green book that the GP’s use to make these decisions) and telephoned CMT UK.

My next job is to forward this evidence to the practice manager to be reviewed… again.

Explaining to my doctor that our conditions fall under the category ‘chronic neurological disease’ or ‘hereditary and degenerative disease of the nervous system’ and why, and why our symptoms will become exacerbated if we catch the flu.  Even though a) they are medically trained and, b) we were both in the extremely clinically vulnerable category during COVID.


What Can you do?

When I advocate, I often take a breath, a pause, sleep on it if you can.  (Especially if it is an emotionally charged situation).

Ask yourself…

  • What can I learn?
  • What do I want to have happen?
  • How can I communicate that?
  • Is there any information I need from them?
  • Is their any information I need to share be specific)?
  • How can I follow up (or ask them to)?


What would your top three be?

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Join The Community

Chronically Empowered Women 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 group we get that.

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

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

Managing Chronic Pain Without Medication

Managing Chronic Pain Without Medication

7 golden steps to manage your chronic pain

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

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

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

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

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

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



Managing chronic pain without medication in 7 golden steps




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

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


2. Let go of all negativity

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


3. Empowerment through learning

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

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


4. Strength through exercise

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

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

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


5. Coping strategies

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

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

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


6. Pacing, pacing, pacing

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

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


7. Focus on the good

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

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


 To Sum Up

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

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

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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!


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