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  • Biff and The Fatigue Monster
  • Millions Missing 2019
  • Surviving a Crash When You Have a Chronic Illness
  • Grief and Acceptance in Chronic Illness
  • The Realities of ‘Back to School’ in a Chronic Illness House
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    The Realities of ‘Back to School’ in a Chronic Illness House
    September 17, 2018
    Chronic Illness Is A Rollercoaster Ride You Can Never Get Off
    October 20, 2017
    The Politics of ‘Labels’ in Schools and the NHS
    August 15, 2017
    Ehlers-Danlos Syndrome (EDS) School Assembly Presentation
    June 6, 2017
    Why Is School Stressful When Your Child Has A Medical Need?
    February 16, 2017
    Working With School When Your Child Has Ehlers-Danlos Syndrome (EDS) – 5 TOP TIPS
    July 1, 2016
    Invisible Illness or Disability – A Quick Parents Guide to SEND and the Law
    July 1, 2016
    Dear headteacher…
    June 18, 2016
    My Teen’s M.E. Diagnosis – Three Years On
    June 16, 2020
    Biff and The Fatigue Monster
    February 14, 2020
    Surviving a Crash When You Have a Chronic Illness
    February 25, 2019
    The Realities of ‘Back to School’ in a Chronic Illness House
    September 17, 2018
    Biff, Chip and Kipper – The Dance Show
    June 28, 2018
    Top Tips for being a Professional Patient
    April 4, 2018
    7 Top Tips to survive a crash and still be mum
    February 11, 2018
    95 Things NOT to Say to Someone with EDS or HSD
    December 20, 2017
    Biff and The Fatigue Monster
    February 14, 2020
    The Realities of ‘Back to School’ in a Chronic Illness House
    September 17, 2018
    Biff, Chip and Kipper – The Dance Show
    June 28, 2018
    7 Top Tips to survive a crash and still be mum
    February 11, 2018
    Chronic Illness Is A Rollercoaster Ride You Can Never Get Off
    October 20, 2017
    The Politics of ‘Labels’ in Schools and the NHS
    August 15, 2017
    The Reality of Fatigue
    May 30, 2017
    Why Is School Stressful When Your Child Has A Medical Need?
    February 16, 2017
    Surviving a Crash When You Have a Chronic Illness
    February 25, 2019
    Top Tips for being a Professional Patient
    April 4, 2018
    Burnout – 8 Signs of Caregiver Burnout
    July 31, 2017
    Ehlers-Danlos Syndrome (EDS) School Assembly Presentation
    June 6, 2017
    Brunel Physiotherapy Lecture – A Round Up
    May 15, 2017
    EDS Kids Handbook – The Memes
    May 2, 2017
    Life Swaps – Managing Chronic Illness
    November 9, 2016
    Childhood Pain
    October 17, 2016
    The A-Z of Ehlers-Danlos Syndrome (EDS)
    May 17, 2018
    The A-Z of Ehlers-Danlos syndrome (EDS) The Memes
    May 17, 2018
    95 Things NOT to Say to Someone with EDS or HSD
    December 20, 2017
    The Princess and the Pea
    June 19, 2017
    Ehlers-Danlos Syndrome (EDS) School Assembly Presentation
    June 6, 2017
    #ZebraDay 2017
    May 19, 2017
    EDS Kids Handbook – The Memes
    May 2, 2017
    Raising EDS Kids
    November 21, 2016
    Falls
    September 16, 2016
    I’m fine
    August 23, 2016
    Pilates in EDS and CMT
    August 5, 2016
    Pain
    February 10, 2016
    Children’s Physiotherapy
    November 20, 2015
    Dear CMT… A personal letter to my neuromuscular disease
    September 10, 2015
    Shoes
    July 25, 2015
    Acceptance – Learning To Trust The Journey
    July 1, 2015
    My Teen’s M.E. Diagnosis – Three Years On
    June 16, 2020
    Biff and The Fatigue Monster
    February 14, 2020
    Millions Missing 2019
    May 9, 2019
    Surviving a Crash When You Have a Chronic Illness
    February 25, 2019
    Grief and Acceptance in Chronic Illness
    February 25, 2019
    The Realities of ‘Back to School’ in a Chronic Illness House
    September 17, 2018
    Biff, Chip and Kipper – The Dance Show
    June 28, 2018
    The A-Z of Ehlers-Danlos Syndrome (EDS)
    May 17, 2018
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  • All About Sarah
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Chronic Illness Is A Rollercoaster Ride You Can Never Get Off
Blog

Chronic Illness Is A Rollercoaster Ride You Can Never Get Off

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Life Swaps – Managing Chronic Illness
Blog

Life Swaps – Managing Chronic Illness

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Childhood Pain
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Childhood Pain

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Hello Forty!
Blog

Hello Forty!

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Falls
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Falls

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Why The Zebra? Why The Zebra?
New? Start Here New? Start Here
About Me About Me
M.E.

My Teen’s M.E. Diagnosis – Three Years On

By Sarah Wells June 16, 2020

I’m not usually one for marking anniversaries, not sad ones anyway. But, this week marks three years since the the Grenfell Tower fire which for us marks three years since my son was diagnosed with Myalgic Encephalomyelitis (M.E.)

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Blog

Biff and The Fatigue Monster

By Sarah Wells February 14, 2020

The Biff, Chip and Kipper Stories through the eyes of a chronic illness mum.

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Blog

Millions Missing 2019

By Sarah Wells May 9, 2019

Grab a cuppa and I’ll attempt to explain why we are supporting the #MillionsMissing protest on Sunday May 12th 2019. My son has been diagnosed with Myalgic Encephalomyelitis/…

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Management

Surviving a Crash When You Have a Chronic Illness

By Sarah Wells February 25, 2019

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. Here are my top tips to spot and to manage crashes.

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M.E.

Grief and Acceptance in Chronic Illness

By Sarah Wells February 25, 2019

A little over three years ago I wrote about acceptance being a huge part of my chronic illness journey. Little did I know when I wrote the article that this trust would be tested as my oldest child’s health was about to spiral into a rapid decline.

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Blog

The Realities of ‘Back to School’ in a Chronic Illness House

By Sarah Wells September 17, 2018

New school year, new uniform, new adventures. It’s the day before school starts back, this year one of my children, Charlie, will be attending a brand new high…

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Blog

Biff, Chip and Kipper – The Dance Show

By Sarah Wells June 28, 2018

The Biff, Chip and Kipper Stories through the eyes of a chronic illness mum.

Keep Reading
Blog

The A-Z of Ehlers-Danlos Syndrome (EDS)

By Sarah Wells May 17, 2018

From adrenaline to Zebra and everything in-between.

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Blog

The A-Z of Ehlers-Danlos syndrome (EDS) The Memes

By Sarah Wells May 17, 2018

The A-Z of Ehlers-Danlos syndrome (EDS) in pictures.  From adrenaline highs, mast cells and slipping rib syndrome to the zebra mascot. Do you know everything about EDS? Please…

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Management

Top Tips for being a Professional Patient

By Sarah Wells April 4, 2018

Help wanted. Hours must be flexible, pay poor. This job will interfere with your social life. Those with a morbid fear of doctors need not apply. The sheer…

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  • About

    Hello, my name is Sarah. I’m a mum, wife, writer, blogger, advocate and occasional public speaker. This is my blog, where I share our life with the world, my passion for raising awareness of EDS, CMT and ME and how I raise my children to be happy with their perfect imperfections. My Stripy Life is here to provide you with regular fresh ideas about chronic health, wellness and navigating the ‘systems’.

    True strength is not just about overcoming obstacles it is helping others to overcome them. This is the true essence of My Stripy Life.

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Are you stressed and overwhelmed? Do you feel unab Are you stressed and overwhelmed? Do you feel unable to cope? 😬
⠀
Many people with chronic illness can feel stressed or overwhelmed by their situation. 
⠀
I remember being paralysed by that feeling, constantly in a state of fight and flight... my sympathetic nervous system switched firmly to the ON position. 
⠀
It showed up in me as thoughts like 'I can't do this' or 'what will my life be like now?' 
⠀
But unconsciously this was just fear kicking off the stress response to protect me.  Because our bodies are smart like that.  At that time it was just about survival. 
⠀
✅Learning to recognise how stress showed up for me was key to understanding my nervous system and learning how to switch off the stress response. 
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You can do this too.
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The first step is to recognise that the body is trying to protect you and also that you can do something about it by slowly retraining your nervous system.
Hospital appointments can be stressful. Travelli Hospital appointments can be stressful. 

Travelling, the unknown outcome, with all hopes pinned, tests, procedures, surgeries, waiting, lack of time to discuss options and a way forward.

We won't even start on being pushed from department to department for decades being told 'your test results are fine' or being gaslit by professionals!

Today we are at GOSH with Rubie.  We have been treated amazingly well by the department and physiotherapists that we will be seeing today.  But in another department... no TWO departments at the same hospital NOT. 

So how did we get over that and always manage to get the best out of our appointments every single time?

How do you keep stress to a minimum? 

⭐️Treat it as it is (this appointment and these professionals are not the sum of your past experiences)

⭐️Become a partner in your own care (know your stuff about your condition and your body and treat the professional you are seeing as a partner in your care, not the boss, you are ultimately in charge but ultimately you value their support and guidance) 

⭐️Be prepared (what do you want to ask? What do you want them to know? What is most important? don't get lost in the story!)

⭐️Remove the emotion and turn up relaxed (you will take on the information better in this state and remember to ask all of your questions) 

⭐️Take a note pad (either with a list of questions or to write down anything important that you want to remember)

⭐️Leave plenty of time to get there (getting stuck in traffic on the way or being unable to park will make you more stressed before your appointment)

⭐️Make sure that you get the follow up report after a couple of weeks and read it and check that it is accurate (if not chase it up or if incorrect request for details to be changed ~ we have even had letters with the wrong name!)

What are your top tips to stay stress free at the hospital 👇🏻👇🏻👇🏻 

Ps. Mine… We always combine long trips to London with a treat!
Awareness days/ months this November. ⠀ #awaren Awareness days/ months this November. 
⠀
#awarenessdays #strongertogether 💪🏻 
#worldcopdday #worlddiabetesday #canceractionmonth #socialmediakindnessday #worldkindnessday #stressawarenessday #antibullyingweek #internationaldayfortolerance #universalchildrensday #worldhelloday 👋🏻 #crpsawarenessmonth
“To be smart is to see the glass half empty or h “To be smart is to see the glass half empty or half full, however to be wise is to know the glass is refillable”. 

May you rest and refill you glass this weekend.

(All credit goes to a lovely member of my Facebook group) 

How are you planning to refill your glass this weekend? 👇🏻👇🏻👇🏻

#chronicillnesscoach #chronicillness #selfcare #refillyourcup
If you want to find your purpose in life, find you If you want to find your purpose in life, find your wound! From the book "The Purpose Driven: What on earth am I here for? by Rick Warren. 
⠀
This particular quote gives one a reason and purpose to search deep within to find the purpose by finding your pain.  I don't know about you but my pain was staring me straight in the face for a long time... I was just choosing not to see.  And because of that for a long time I didn't see my reason for being. 
⠀
It wasn't until my pain impacted my little girl that I snapped out of it, put my big girl pants on and in that moment nothing was the same again.  In that moment a seed was planted that has grown and grown and developed into my three amazing children and the business that I have today.
⠀
Have you been able to do this?  Find a purpose in the pain? Have a positive outcome from an impossible situation? 
⠀
I'd love to hear in the comments 👇🏻👇🏻👇🏻
⠀
#lifepurpose #chronicillness #chronicillnesswarrior #invisibleillness #chronicwellness #chroniclife #wellnessjourney #chronicillnesscoach #chronicinsta #ehlersdanlossyndrome #charcotmarietooth #loveyourlife #findyourpurpose
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