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

 

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

 

#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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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!

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