The Top Three Things That Help Me Manage My Chronic Illness

The Top Three Things That Help Me Manage My Chronic Illness

Narrowing this list down to just three things that help me manage my chronic illness has been tough.  I’ve tired not to choose the top three things that help me manage EDS or CMT or even look at it through the eyes of the main symptoms but more through the lens of my chronic conditions as a whole and how they play out in my life everyday, so that they may help you no matter what chronic condition you may have.

 

 

 

#1 PACING

 

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

 

 

#2 MINDSET

 

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.)

 

 

 

 #3 ADVOCATE LIKE A MF TIGER

 

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.

Advocating.

 

Monday

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

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.

 

Wednesday

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.

 

Thursday

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.

 

Friday

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.

 

Update

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!

Emotional Mastery In Chronic Illness… Lessons From Disney’s Frozen

Emotional Mastery In Chronic Illness… Lessons From Disney’s Frozen

What if the thing you really want is hiding right where you are afraid to look?

 

This week my daughter turns 12.  I am not quite ready to accept that she is ALMOST a teenager – my sweet little girl is turning into a bright and sassy young lady.

For a birthday treat we took her and a friend into London to see the West end production of Disney’s Frozen.

My kids grew up with this movie, the songs embedded in me like a familiar, comforting tune playing in the background – and rather than the movie more recently the Just Dance version has become a firm favourite.  It takes me right back to her prancing around the front room all dressed up and singing at the top of her voice in her princess outfits : innocent, carefree.

We’ve all seen the film we all know the plot but have you ever thought about it… really.

I’m going to give you my take on what Disney’s Frozen taught me about mastering emotions and coping with life’s challenges.  You may be surprised to discover that that the key to unlocking the thing that you deeply desire may actually lie in that last place you want to look.

 

Frozen-Samantha-Barks-(Elsa)-Photo-by-Johan-Persson-

 

Conceal, don’t feel

 

It begins when Elsa accidently hits Anna with her winter powers, Anna’s memory is wiped of the incident and from this moment Elsa hides herself and her powers from her sister.  Early on Elsa’s is given a pair of gloves, as she puts them on her father tells them they will help.  There is a pivotal line at the beginning of the performance that forms the backbone of the show from here on in.

 

Father: “conceal it.”

Elsa: “Don’t feel it.”

Both: “Don’t let it show.”

 

How often do we follow this advice in our own lives?

Feeling sad? Conceal, don’t feel.

In pain? Conceal, don’t feel.

Feeling fatigue? Conceal, don’t feel.

Stressed out and overwhelmed? Conceal, don’t feel.

Struggling to get your head around a diagnosis? Conceal, don’t feel.

 

Whenever we experience what society would deem to be ‘negative’ emotions we are conditioned to pop them in a box and get on with things, to put on a brave face, to not show our perceived weaknesses to the outside world.

“Conceal, don’t feel, put on a show, make one wrong move and everyone will know.”

We have been taught to think of emotions as good or bad.  But feelings are just feelings and all emotions are part of being human. Negative emotions aren’t harder to feel, it’s resisting them that’s hard.  We develop habits NOT to feel what we perceive to be the bad or negative emotions creating resistance, ironically taking the energy from these emotions with us until a situation triggers it again and it keeps piling up inside.

 

Fear

 

Elsa was tormented by fear, scared to hurt her sister and of not being able to control her powers, the fear had gripped and controlled every part of her life and had built up like a tornado inside her over the years of pushing it away.

Anna knew this was driven by fear but she just didn’t know why.

“Why do you shut me out? Why do you shut the world out? What are you so afraid of?”

Fear wasn’t working for Elsa, but she did not know another way to be.  Like most of us we are just doing the best we can with the resources that we have at the time.  When we know better…. we do better.

 

Hurt

 

Coronation Day proves too much for Elsa after showing her powers she flees to the mountains. 

She is hurting right now.

What do we do when we are hurting? We hide away, we shut ourselves off, we avoid, we feel sorry for ourselves, we feel angry we wallow in self pity for a bit.  Sometimes we come out of it, sometimes we don’t.

But, it all comes back to the underlying fear that she feels.  She is afraid of what people may think of her, that they will reject her and of what she may do.  It is easier for her to hide away than to face up to what she is scared of.

Familiar?!

Here in the mountains is where we have the famous song “Let it go” I’m sure most of you know the words by heart. 

It may seem that on one level Elsa has finally embraced and accepted who she is.  But while running away has made her fears and problems seem smaller the internal storm is still raging inside her.

Avoiding our feelings just postpones things, it’s what we do when we are not ready to face up to the hard stuff.

 

“Let it go , let it go, can’t hold it back anymore

Let it go, let it go, turn away and close the door

I don’t care what they’re going to say

Let the storm rage on

The cold never bothered me anyway”

“It’s funny how some distance, makes everything seem small

And the fears that once controlled me, can’t get to me at all”

 

Ultimately all that Elsa is doing is running away from her problems instead of dealing with them.

Anna comes to the ice castle in the mountains to find her sister, Elsa thought that she had solved everything on her own by running away and is shocked to know that Arendell has been thrown into an eternal winter but she just can’t bring herself to help, accidently striking Anna again but this time in the heart.  Elsa conjures up a snow monster to send everyone away from the palace before she can hurt anyone else.

Pushing everyone away because she does not know what to do.  

Eventually captured Elsa is told by Hans that Anna has died because of her.  She uses her powers to break free and makes her way to the frozen river, to Anna.

Elsa is overcome with grief and remorse and finds that in the midst of these emotions the blizzard actually stops.  In that moment Elsa realises that she can control her powers.

 

“There is no fear in love, but perfect love casts out fear.” 1 John 4:18

 

A real love for others will chase those worries away. The thought of being punished is what makes us afraid. It shows we have not really learned to love. Perfect love was the antidote to fear.

All emotions are part of being human, not good or bad and our emotional freedom lies in accepting, allowing and releasing our feelings not stuffing them down or drowning in them.

Once again Disney, in my opinion hit the mark with this one.

 

Lessons in my own life

When I was first diagnosed with Charcot Marie Tooth disease and subsequently Ehlers-Danlos Syndrome I fought so hard to be strong.  I was scared and my strength became my protection.

It felt like I was fighting every day.  I did not let my guard down because I was scared that if I did it would be a weakness and someone may see or I would not be able to cope.  I thought that fighting was the only way.  That I had to have control over everything that I possibly could as everything felt like it was out of my control.

On the outside it seemed like I had everything sorted : the perfect family, life, children, car. I did have all these things… my family especially are bloody amazing but these external things were not what I needed.

While to the outside world our life was perfect (and in many ways it was), underneath it all felt like I was struggling to stay afloat. Because ultimately fighting is tiring, hiding is lonely, being strong and pretending to have it together all the time is not real.  

I had built my Ice castle around me and it was beautiful and strong and I did not let any of those messy feelings out for fear the walls of my castle may crack and it may all come tumbling down.  

BUT

The strength that I so desperately was striving for was not found in the depths of the fight or inside the walls of my heavily fortified castle.  

The strength I needed could only be found when I was ready to trust and embrace peace, the very place that I was scared to go.

My strength today, is not found through putting my gloves on and getting into the ring every day ready for battle. It is found in the quiet knowing that I can handle anything that life throws at me. That I have it covered. Peace has opened the aperture to see the bigger picture and the possibilities available to me to face all of life’s setbacks.

Fighting only narrowed that lens.

It’s often the last place that we are willing to look, and the hardest one to go to, that holds the key to everything that we desire.

 

If you want to find true connection and love you will only find it once you’ve embraced you’re fear of loneliness.

If you want freedom you will find it once you have embrace feeling stuck.

If you want to feel worthiness, embrace the part of you that feels unworthy.

To experience authentic confidence you have to embrace self-doubt.

To feel secure you must know insecurity.

Just imagine that you have been hurt in a past relationship, you are so scared of getting hurt again so you are guarded when dating, never really opening up, just in case you get hurt again.  What you really desire is love but until you are willing to be vulnerable love will never really be open to you. You have to embrace your vulnerability to find what you ultimately desire, true love.

 

What if the thing you really want is hiding right where you are afraid to look?

 

So queen, my question to you, what are you willing to embrace in order to get what you desire? Are you brave enough to go there and set yourself free?

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Join Our Tribe

Chronically Empowered Women is FREE private Facebook community of women who have chronic illness… and there are loads of us with EDS!

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 just 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!

Overwhelmed? 8 Steps To Feel Calm And In Control When You Have A Chronic Illness

Overwhelmed? 8 Steps To Feel Calm And In Control When You Have A Chronic Illness

It happens to everyone no matter how many hours we have in a week, how supportive our families are or how great we are at delegating. Everyone. No one has there shit together all the time no matter how much  they pretend that they do.

But when you are living with a chronic illness it adds ‘another thing’ to take care of, or not, depending how you are managing things.  And if the latter is more your style then feeling overwhelmed soon follows.  Not just the extra stuff it adds to your day but the emotional and mental energy that it takes to think about and manage.

I am much better at putting the steps into practice to calm overwhelm before it takes hold, but that has not always been the case.

When I was working as a teacher, or as a young mum it felt like it was part of me every single day. Like I was balancing on the edge of a cliff the smallest thing going to push me over the edge.

For me this was closely related to wanting to be all things to all people. A people pleaser and a perfectionist neatly rolled into one, I was also in denial slightly about my diagnoses’ and trying hard not let anyone see the cracks underneath the surface.

I wanted to be the best mum, wife, daughter, sister, friend, teacher, support to everyone else… to hide from the fact that I really needed that support.

I proudly put on my superwoman cloak every single day, but the weight of that cloak wore heavy.  My symptoms got worse, life got harder and I was NOT serving myself.  I felt tired, overwhelmed and out of my depth very often.

It’s different now.  Because I have learnt the steps to recognise overwhelm and have a first aid process at the ready.

These steps are designed to take you from meltdown to calm and connected.  Next time overwhelm strikes, take a deep breath and work through this list.  You will be back to feeling calm and in control before you know it.

 

 

 

 

Overwhelm first aid kit

8 Steps to get you feeling calm and in control

 

 

1.Stop

And breathe.

Take a walk, grab a cuppa whatever works for you but just stop and calm.

Know that it’s OK. With everything that’s going on right now it’s perfectly normal to feel this way.

 

2.Get It All Out

 

Do a big brain dump on a piece of paper, or in your favourite journal.

Get it all out.  Everything that is on your mind, the stuff, the conversations, the concerns.  Big and small.

The breathe again.  Feels better already, right?

 

 

3.Time to Ditch and Delegate

 

Now take the roll of your best friend or someone who cares about you. It’s time to cross some things straight off of your list, to make space for you to plan and refocus, let’s ditch:

  • Everything on your list that is out of your control.
  • Not urgent
  • It will never get done anyway

Now write a new list, its time to go through it and see where you could ask for help.  Put your best friend head on again when you do this, remember if the boot was on the other foot and someone asked you for help would you do it? it’s probably a yes right?

  • If everyone I asked would say YES what would I hand over?
  • If they could do it NEARLY as well as me what would I delegate?
  • What would free up time if I passed over now?

Now actually ask for the help. Make the call, send the email.

And breathe again.

 

 

4.Refocus

 

It’s time to really asses what needs your attention right now.  When you are caught up feeling overwhelmed it’s hard to see the big picture.  Sit back, take a breath and ask yourself:

What deserves my attention right now?

Where should I be focussing my energy?

What is important in my life?

 

5.Prioritise

 

Now you have worked out what is actually important to you it’s time to be ruthless.  What’s left on your list may need to get done but some of it will be more important than others.  Sometimes looking at it all laid out can be overwhelming so we are going to prioritise.

A – ABSOLOUTELY It absolutely must get done today

B – BE NICE It would be nice if this got done today, but tomorrow is another day.

C – COULD HAPPEN Could happen, today, tomorrow, the next day – no pressure.

 

6.Take Time For You

 

The most important thing, most often overlooked.

Don’t just dive into doing the stuff.  What ever you need to do.  Get some space, you will be more able to deal with everything when you return.

Grab another cuppa, go for a walk, phone your bestie, binge on Netflix.  Whatever works for you.

 

7.Tackle your list

 

Take a look at your list. If there are no A’s on your list,  amazing… have a rest It is is THE BEST thing that you can do for your body when you are feeling overwhelmed.

Then start with your A’s, work your way through your list on small thing at a time. With plenty of rest built in.  It is really important to find the thing that refuels you and build it in to your days.  This will sustain you way into the future.

 

8.Reward

 

Another step that is usually skipped.

That may be doing cartwheels in the garden (now I’m jealous if you really can do this), a mini break with your hubby, dinner at your favourite restaurant, a walk in the fresh air.

Reward yourself, you’ve got this!

 

What Do you find is the hardest thing when you are feeling overwhelmed? Does dealing with your chronic condition add another thing to your plate?

Let me know in the comments.  

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CHRONICALLY EMPOWERED WOMEN

 

The Chronically Empowered Women Facebook Group is a community for women with long term, chronic illness or disability.

It is a space to be you, to be honest that you want more than this, to be honest about not knowing how to start. A place where we can lift each other up and support each other. Where you can share your story and where we can inspire each other with our wins.  It’s about understanding that life can be tough but also that we can do hard things. About recognising your own unique superpowers!

Each week we talk live about a different chronic illness topic in CHRONIC CONNECTION.

I’m super proud of our community… come and join us.

I’m Fine…  What the f**k does that even mean?!

I’m Fine… What the f**k does that even mean?!

I’m fine.

I used to use this reply all the time when people would casually ask me how I was.

Short, sweet and to the point, but what does ‘I’m fine’ even mean? 

The dictionary would have you believe that I was feeling ‘in a satisfactory or pleasing manner or very well.’ as you will see below that was not always the case. 

But why couldn’t I be honest? Why do I still have to work on this? And, what was I scared of?

 

(These examples are all taken from real life.  A snapshot into our families’ life)

I’m fine.  I dislocated my knee this morning and sat on the floor for half an hour wondering how to get up and get all the kids breakfast before school, or if I would manage to drive to get them there, (big sigh). That means that I’ll miss coffee with the girls 🙁  So commonplace are scenes like this that one of my children didn’t move until the adverts of his favourite TV show to wander out to the kitchen to see if I needed anything.

I’m fine.  My wrist gave way as I lifted a pizza out of the oven for lunch, this made me catch the tray on the counter which in turn made me bounce the tray down my other arm leaving three lovely zebra striped burn marks.

I’m fine.  A cover teacher forced my son to participate in PE even though he communicated his pain, she didn’t believe him and joked unkindly that he should see a doctor (he’s seeing many). This teacher will never regain his trust.

I’m fine.  I can’t seem to take a breath today, it is shallow and fast as my autonomic system is struggling to balance itself.  I feel like I’m wading through mud.

I’m fine.  I stepped on a stone at the end of a really nice walk, literally 10 yards from the front door. I sprained my ankle and went over like what only can be described as a see-saw; ankle, knee, hip, elbow, shoulder in perfect succession, finally stopping as my face skimmed the floor.  Managing to cut open my leg through denim.

I’m fine. My daughter is screaming uncontrollably in a combination of pain, exhaustion and helplessness. After pain relief, a massage and a warm bath I can do no more to help her but to gently hold her and re-assure her that she’ll be OK.

I’m fine.  I fell twice out for a walk while pushing my daughter in her wheelchair. Today (well most days actually) walking without looking at my feet seems to render me incapable of staying upright at all. Two scabby knees and a cut on the top of one foot and I’m beginning to regret wearing shorts.

I’m fine.  We’ve spent the last 12 hours being sent across London from one hospital to another for emergency brain scans on our son after they found pressure behind his eyes and his peripheral vision affected, thankfully they rule out a mass. The longest… 12… hours… of… my… life.

I’m fine.  I get barely any sleep and when I finally get up I realise that a bone has subluxated somewhere in my foot.   Weight bearing is agony, actually, sitting is agony.  But the kids have an early orthotics appointment at the hospital, church services, school, so I brace my foot as best I can.  I manage to get a physio appointment 5 days later to manipulate it back into place.

I’m fine.  I learn that my child’s class teacher has decided (all by herself) not to apply her shoulder brace for the last six months in school, the very thing to keep her shoulder safe from a dislocation during play times and PE.

I’m fine. As I stood up in the middle of my Pilates class to change position from lying to standing the sudden pooling of blood in my legs and the inability of my heart to pump enough blood to my brain makes me come over hot and clammy.  As if in slow motion the room started to spin as I began to pass out.

I’m fine.  My son comes home tired, really tired to the point he can barely string a sentence together. I learn that his new teacher is refusing his requests for water in the afternoons even though the importance of hydration is clearly written into his care plan.

I’m fine.  Sometimes talking to my friends I feel like I live in a parallel universe as their lives, worries and hopes can feel a million miles away from mine.

I’m fine.  I had a wonderful day out with my family yesterday. Walking, laughing, picnicking, hey, we even managed a little dancing. Today, I am paying for my fun. Breathless, Potsy, my heart does not know what it is doing and I struggle to even sit awake on the sofa.

I’m fine.  I don’t know if I’m coming or going this week. School meetings to plan provision and care plans, more meetings to educate staff, reviews in physio, telephone calls to sort OT, I must call the EWO. Then on Thursday and Friday autonomic testing at the National Hospital that I’ve waited 18 months for (that I know will flare my POTS). Could I cancel? Should I??

I’m fine.  My daughter yelps every time that she moves in bed as her hip partially dislocates and I read her to sleep to distract her from the pain.

I’m fine.  I fell spectacularly into the Thames as I save my daughter from stumbling along a narrow bank. Spraining my ankle and doing something to my right arm that leaves me unable to hold a cup of tea, and we all know a cuppa fixes everything.

I’m fine. It’s my second migraine in three days and this one has really floored me. My arms are heavy my face is numb and I feel like a brass band are playing in my head.

I’m fine.  Today I practiced true calmness under pressure as my son went into shock after a bad break of his wrist BMXing.  I kissed him as he closed his eyes in theatre to manipulate the joint back into alignment and my heart broke a little.

I’m fine.  I’m on my way to Brunel University with the head of the Child Development Centre to present to a full lecture theatre of physiotherapists for an hour or so.  Everything that I need them to know as practitioners before they work in paediatrics, with children like mine. The last time I stood up in front of so many people they were all four and it was my Nursery Class.

I’m fine.  My rib is out, subluxated. As I drive to school to collect the kids I still can’t get it to relocate and as I stand in the playground making small talk it really hurts to breathe.

I’m really NOT fine.

 

I'm fine written on a piece of paper and pinned to a notice board

The three reasons that we say ‘I’m fine’ when we don’t mean it

I think I’ve worked some of it out… which is not to say that I have got it all sussed now, just that I’ve done my inner work and when I say ‘I’m fine’ now, quite often I actually mean it.

So what three things does it boil down to under the surface.

 

How we are raised

As kids ‘I’m fine’ is programmed into us as a way of saying your are OK, there is nothing wrong. If you fell over your parents would often say,

‘Oh dear, up you get, you’re fine’.

When in fact you probably didn’t feel fine at all, you were probably hurt, if not physically then emotionally.  But by saying you were fine you were being taught to dismiss how you were feeling in that moment.

So as adults why would we do anything else?

Avoiding Problems

We may also just want to be low maintenance and easy going, if we are difficult then that may lead to conflict so ‘I’m fine’ works a treat.

We may believe people won’t like us or easily get bored or fed up if we ask for too much or have complicated needs or feelings.

It feels safer to pretend we’re fine and be a dependable, cheerful, easy-going person who never complains or needs anything.

Avoiding Judgement

Pretending that we don’t have any problems or difficult emotions can also be a form of denial. We want the outside world to think that we have it all worked out and together because we are afraid of judgement from others if they knew the truth.  We may also deny our problems if our feelings may be overwhelming, because then we would have to deal with them right?!

 

Moving Forwards

The first thing is working out what ‘I’m fine’ really means to you, ask yourself these questions…

  • Is it true?
  • What does it mean?
  • What is it telling you about your experience with chronic illness and how you deal with it? 

Moving past denial, being honest with yourself and getting to grips with the messy stuff – what you really feel about your experiences and the truth about what your experiences actually are… will mean that next time that you say ‘I’m fine’ it may not be a lie.

 

I’d love to know what you think in the comments 🙂

Join Our Facebook 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!

 

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EDS And CMT One In Twelve Million

EDS And CMT One In Twelve Million

Does it make me special?

One in 12 Million… the odds of having both hypermobile Ehlers-Danlos syndrome (EDS) and Charcot Marie Tooth Disease (CMT), based on current prevalence!

Some days it feels pretty special, let me tell you why.

I’m not going to dwell on the detailed science involved with hypermobile Ehlers-Danlos syndrome (EDS) and Charcot Marie Tooth Disease (CMT), the genetics behind the conditions so to speak.  I may get into that all in a bit more detail at a later date.  I will try to explain what it means to live with them each day, why I might look fine one day and not the next.

 

CMT

 

Lets start here, CMT is genetic, it has been passed to me from my mum. We were unaware it was in our family until I was diagnosed after complications having my first baby. It is thought that around 23,000 people in the UK are affected.  I have a 50% chance of passing it on to my children. I have three children now, our youngest had a positive diagnosis just before her second birthday, one of the boys has a negative result and one hasn’t been tested as he has no symptoms… but it may still be there.

CMT affects the nerves in your peripheries, your arms and legs.  Our body’s system of nerves is similar to a network of electrical wires. Some of them, called sensory nerves, are designed to pass information back to the brain about what you can feel with your fingers, toes, legs and arms, etc. The others are command pathways, telling your muscles to do something, like lift your left foot – and are called motor nerves. CMT affects both these types of nerves so you can experience weakness and wasting in your muscles, numbness and sensory problems. In the type that we have in our family the myelin sheath of the nerve, the insulation, isn’t working properly affecting the speed of the signals getting through. This deterioration causes atrophy of the muscles in the foot, lower leg, hand and forearm.

The muscles in my feet have wasted significantly and I now have foot bone abnormalities including pes cavus feet (high arches) and hammer toes and I walk with supination (roll onto the outsides of me feet). My leg muscles are doing the job that the foot and ankle muscles aren’t – thankfully – and I am fortunate enough to be able to still lift my feet. It does mean I over work my hip flexors, iliotibial band and hamstrings to walk and cramp and pain wakes me often at night.

The muscles are wasting in my hands and my wrists are weak giving me problems with hand function and dexterity, they are often painful as they don’t have the muscle bulk to do the work that I ask them to do each day.  I also dislocate and subluxate my thumbs and wrists in a couple of places but EDS has a part to play in this.

CMT is progressive, it won’t get better or go away but it is not life limiting. When I was diagnosed I was a new mum and having a hard time getting my head round it all. My neurologist said to me at an appointment, “If I had to choose any of the hereditary neurological diseases I would choose CMT.” At the time, as I was grieving the loss of my future, I thought he was nuts! But he was right. There are much worse neurological conditions to have, he didn’t know at that time however I had EDS as well.

 

 

 

EDS

 

My EDS diagnosis came later, 10 years later.  At first we thought that CMT explained everything in our families weird and vast medical history but as time went on gaps showed. Rubie blessed our lives but as she grew developed the skills of a contortionist and we started to want answers to all of the unanswered questions circling in our mind.  It was recommended that I see the amazing professor Rodney Grahame before my foot surgeon would consider surgery, at this point I had been reading his books to gain answers to Rubie’s hypermobility, so I had half an idea what was coming 😉 After an hour and a half’s consultation I now had a shiny new EDS badge to wear. The missing pieces of our puzzle now slotted into place.

EDS is the term given to a whole collection of inherited conditions that fit into a larger group known as hereditary disorders of connective tissue. Connective tissues provide support in skin, tendons, ligaments and bones, it is the glue that holds the body together. There are several different, distinct types of EDS, but they have some features in common, loose joints, stretchy skin and tissue fragility. I have hypermobile Ehlers-Danlos Syndrome. The exact cause of hEDS is unknown. The features suggest that there is a problem with connective tissues and possibly collagen. The condition appears to be inherited which suggests that there is a genetic cause. It is likely that there is an alteration in a gene, or several genes, containing the instructions for making connective tissue. This results in the connective tissue being less effective.

It leaves me with joint hypermobility, my joints having a wider range of movement than usual, they are loose and unstable, can dislocate and subluxate. This happens daily, this week cutting a slice of cheese I popped out my wrist and dislocated my ankle trying to pull off my jeans. It not uncommon for a sneeze to dislodge a floating rib. In my 20’s I would dislocate my knees on a daily basis with minimal trauma, walking into Regal’s (the local night club) on a Saturday night or turning over in bed. I had major knee surgery to realign things and tighten ligaments so it happens less now than before but is gradually becoming more of an issue again.  As my joints are less stable they are prone to sprains and strains.

I’ve had to make friends with the pain, it’s part of my daily life now. This can be ‘acute’ when I overdo things or as the result of an injury like a dislocation or ligament injury. It can also be a sustained persistent pain, this is worse for me when I am tired and I can feel like my whole body has been beaten. I also get a lot of neuropathic pain. I have learnt a lot about managing the pain I have. I’m a classic boom buster and pushing through my pain every single day wasn’t doing me any favours at all. Now I accept it, deal with it with medication, pacing and distraction and move on. My mindset plays a major part in my pain management as well as the CBT technique of pacing.

My proprioception is poor, this is my body’s ability to sense stimuli arising within the body, with regard to position, motion and equilibrium. To sense where ones body is in space. It affects balance and co-ordination. It is further affected by the sensory and motor nerves in my hands and feet being significantly limited.  I rely on my eyes for a lot, and now I’m well into my 40’s my eyesight needs a little support too!

There is a plus to all of this though, soft velvety skin. Many EDSer’s look years younger than their age. The downside is that I have mysterious bruises appear everyday, my skin marks really easily and my scars are stretched and thin. When I was in the pain rehabilitation programme at Stanmore  a few years ago and first met the girls on the ward they were shocked to hear that I had three children. I was actually 28 when my first child was born and was 38 at the time. Up until I was 39 I was asked how old I was when buying a bottle of wine in the supermarket. In my teens this would frustrate me, at nearly 40 I was quite flattered. There has to be a plus to this right?

 

 

Autonomic Dysfunction

 

One of the worst symptoms for me is the autonomic dysfunction that can go hand in hand with EDS. The functions that your body takes care of automatically, without you having to think about it. These manifest itself with feeling dizzy, faint, passing out, palpitations most often when you change position from sitting to standing. Other symptoms include difficulties in maintaining body temperature, shortness of breath and cheats pain, migraine, adrenaline surges, fatigue, hypoglycaemia, headache, blurred vision and brain fog and abdominal symptoms such as bloating.

These autonomic symptoms never go away they are always lurking in the background waiting to pounce. When they flare life is impossible, I have been in a position for weeks on end where I can’t lift my arm to brush my hair, talk without being completely breathless or stay awake for more than a couple of hours. I am very thankful that my autonomic symptoms flare up then settle down again. I have and a flare last for months in the past and it probably take a year to pass fully. Imagine living with it at that level daily, forever?  I manage my symptoms every day by drinking plenty of water and adding salt to everything, increasing my blood volume, keeping physically conditioned (which is easier said than done!) and some medication.  But key to living well with all of my conditions is to listen to the warning signs and stop before my body completely crashes.

The laxity of the connective tissue in the stomach and colon as well as the problems with the body’s autonomic responses can be responsible for many abdominal complaints, such as bloating, constipation and gastroparesis.  So to combat that I eat a wheat and gluten free diet and it helps relieve some of my gastro symptoms such as bloating and nausea. Small regular meals and medication help with the rest.

 

 

Fatigue

 

 

The fatigue can be relentless, I’m guessing that I am lucky enough to get a triple whammy of this from the CMT, EDS and autonomic dysfunction. Fatigue is a severe form of tiredness that exists despite a proper nights rest – or even a whole week in bed. Many people with EDS are diagnosed with ME or CFS long before their EDS diagnosis. This is exactly what happened to me, when no one could explain why 3 months had passed and I still couldn’t function I had am ME label put on me without being properly diagnosed or supported. Having a son now with true ME I can see the similarities but also the distinct differences between us. He has been much more sick for a much longer period with ME, with post exertional malaise (PEM) and cognitive symptoms, like memory loss, recall problems and concentration being the hardest symptom to manage long term (not ideal when you are studying for your A levels).

 

What Helps

 

Having a good attitude to having chronic illness helps. I’m not saying it’s always easy; when something pops 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 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 is consumed with thoughts of illness and loss. It’s natural I get it. I’ve been there.  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.

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, CBT, mindset and NLP techniques to get fantastic results form my clients. To help them to move from stressed, tired and overwhelmed to become strong and empowered, energised and confident – ultimately in control.

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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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...

Rare Conditions – The Importance Of Supporting Mental Well-being

Now more than ever before it is important to support both mental and physical well-being in people with a rare disease diagnosis. Rare diseases affect approximately 3.5 million people in the UK (Rare disease UK), a condition is considered to be rare if less that 5 in...

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!

The A-Z of Ehlers Danlos Syndrome (EDS)

The A-Z of Ehlers Danlos Syndrome (EDS)

The A-Z of Ehlers-Danlos syndrome (EDS). Simple, jargon free and real.

From adrenaline highs, mast cells and slipping rib syndrome to the zebra mascot.  If you have EDS or know someone that does these thing will sound familiar.

But, do you know everything there is to know about EDS?

When I was diagnosed I remember the Aha moments kept coming as more and more things from my past slotted into the definition of my shiny new diagnosis… like my narrow arched palate and local anaesthetic never working!

Please share far and wide!

Let’s make people aware that having EDS is far more than soft skin or loose hypermobile joints.

 
 
A is for adrenaline
 
B is for bowel and bladder
 
C is for connective tissue
 
D is for dislocation
 
E is for elastic, velvety skin
 
F is for fatigue
 
G is for genetics
 
H is for handle with care
 
I is for invisible illness
 
J is for joint hypermobility
 
K is for kyphoscoliosis
 
L is for local anaesthetic
 
M is for mast cells
 
N is for narrow palate
 
O is for orthostatic intolerance (POTS)
 
P is for pain
Q is for questions
 
R is for relaxin
 
S is for slipping rib syndrome
 
T is for TMJ
 
U is for unexplained stretch marks
 
V is for vascular EDS
 
W is for widespread symptoms
 
X is for x-rays
 
Y is for years to diagnosis
 
Z is for zebra
 
 
Do you have a loved one with EDS?
 
Share this post and get their opinion…

Overcoming Imposter Syndrome – Journaling your feelings

Last week I spoke about Imposter Syndrome, you can read about it here - What is Imposter syndrome and Do I have it? The first step in overcoming Imposter Syndrome is to acknowledge what you're feeling, and why. Start by keeping a journal or writing down your thoughts...

How I Fake My Chronic Illness Symptoms

I fake my EDS symptoms all the time. Every day. For as long as I can remember. It is second nature, it's why I am so good at it.   Now I don't mean I'm faking the symptoms of my condition, making them up, exaggerating them, they are very real to me and they are...

8 Ways That Imposter Syndrome Shows Up When Have A Chronic Illness Or Disability

Have you ever felt like you don’t belong? Like any second now your friends or work mates will discover that you are a fraud? Do you ever think that your successes are attributed to luck, rather than your own skills or qualifications? Or, do you try to keep more and...

Rare Conditions – The Importance Of Supporting Mental Well-being

Now more than ever before it is important to support both mental and physical well-being in people with a rare disease diagnosis. Rare diseases affect approximately 3.5 million people in the UK (Rare disease UK), a condition is considered to be rare if less that 5 in...

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...

Acceptance – Why it is so important when you have a chronic illness?

Acceptance in human psychology is a person's agreement to the reality of a situation, to be able to recognise a process or condition (in this case a chronic illness or health condition) without attempting to change it or protest it.  In simple terms getting your head...

The A-Z of Ehlers Danlos Syndrome (EDS)

The A-Z of Ehlers-Danlos syndrome (EDS). Simple, jargon free and real. From adrenaline highs, mast cells and slipping rib syndrome to the zebra mascot.  If you have EDS or know someone that does these thing will sound familiar. But, do you know everything there is to...

EDS And CMT One In Twelve Million

Does it make me special? One in 12 Million... the odds of having both hypermobile Ehlers-Danlos syndrome (EDS) and Charcot Marie Tooth Disease (CMT), based on current prevalence! Some days it feels pretty special, let me tell you why. I’m not going to dwell on the...

I’m Fine… What the f**k does that even mean?!

I’m fine. I used to use this reply all the time when people would casually ask me how I was. Short, sweet and to the point, but what does 'I'm fine' even mean?  The dictionary would have you believe that I was feeling 'in a satisfactory or pleasing manner or very...

Overwhelmed? 8 Steps To Feel Calm And In Control When You Have A Chronic Illness

It happens to everyone no matter how many hours we have in a week, how supportive our families are or how great we are at delegating. Everyone. No one has there shit together all the time no matter how much  they pretend that they do. But when you are living with a...

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, 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!

 

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