Fibromyalgia

The Things We Carry

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Having Fibro means you constantly feel like you’re on an uphill hike with a back pack full of stones even though your lab tests are normal & you might even look like you’re a well person.

Your invisible illness and the toll it takes is hard to carry.

In this blog post I talked about communicating with your Doctor and how tricky that can be.

When I presented to health professionals at a conference recently I wanted them to know how Fibro patients feel when they’re sitting across the desk. How they can communicate with them better & how they can understand them better.

I told them about the back pack full of stones

Fibro is a long hard walk up a hill on unsteady ground. You pick up stones from under your feet at regular intervals.

Each one of those stones represents the things you carry – pain, fatigue, brain fog, shame, guilt, fear, stigma, lack of understanding from those around you, lost dreams & hopes for the future – the list is long & I’m sure you could add more stones that are meaningful to you.

Everything is harder when you have pain and fatigue, and at some point the back pack gets really full.

The good news is, you have choices. 

You can remove stones & lighten the load!

The purpose of coaching is to walk beside you, while you find new ways to manage your Fibro:

✅  Learning how to chuck the stones that aren’t serving you

✅  Supporting you to refill the pack with super light tools you can reach for at any time.

✅  And most importantly, to help you get back to doing what matters most to you.

If you feel ready to work on stones that weigh you down & the tricky slippery path you’re treading  here’s where you can find me

Talking to Your Doctor about Fibromyalgia

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Have you ever found it difficult to talk to your doctor about Fibromyalgia and how to manage it?

You are not alone! Fibromyalgia is a particularly tricky condition because your labs come back normal and doctors often aren’t trained to help you manage it successfully.

It is common to feel your concerns are ignored & to feel disbelieved. Even the kindest of doctors may not have many tools to help you feel better

Having Fibro is a hard enough grind without having to fight our corner all the time. It’s just not fair!

One thing that’s really important is how we prepare to talk to our Doctor and what we say in appointments. That includes how to get a diagnosis, being clear about our Fibro symptoms, excluding other conditions & some ways to share data with them.

In order to help my clients communicate with their Doctors more clearly about what they need I created a helpful checklist which you can find here.

I hope it helps! Please let me know. You can email me here

This blog post originated in an email to my list of subscribers. If you’d like to receive regular emails from my about all things Fibro please sign up here.

If Fibro Could Talk..

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Why did you pick me, Fibromyalgia? 

It’s a question I ask myself a lot. Sometimes out of curiosity, so I can manage it better and sometimes more in anger and frustration.

If I could write Fibromyalgia a letter asking why I have it and how I manage it, so I can explain it to others, then this is the reply I would expect:

Dear Deb,
I’m sorry you have to live with me! I know I’m not the perfect house guest – I can really outstay my welcome, and I’m not always easy and definitely not predictable. I can be scary, overwhelming and confusing.

I picked you, Deb, because you are a caring person who has always put others before yourself. You’ve been so busy doing that you forgot to look after yourself! And that meant you lost the ability to listen to your body and to stop when you needed to. That’s one of the reasons it was so easy for me to move in.

You’re not alone – it’s estimated between 2% and 8% of the world’s population have Fibro, and that figure doesn’t cover all the people who have it, because it’s very under – diagnosed.

Some Doctors don’t even believe I exist! How ridiculous is that! 

At first you found it difficult to get your Doctor to address your symptoms & work out what was going on – that was hard. Not getting listened to can make me shout louder to be heard & that’s what happened..

Developing Fibro is really common for people who have trauma in their lives, ongoing or because of a one off event. You’d had chronic pain for a while before you got diagnosed with Fibro. And that made you vulnerable.

It’s also seen in families. Your Mum & your Grandad had chronic pain & fatigue, so that’s a factor too. Some of the viruses you’ve had have made you more likely to get a chronic illness

Please remember that NONE of this is your fault! 

The good news is – The things you do every day are lessening my impact on your life.

Pacing activities & work, getting good sleep, learning how to exercise without causing a flare, learning boundaries & most importantly learning how to regulate your nervous system have, as you know, made a huge difference to how I affect your life from day to day.

You’ve also learnt how to advocate for yourself with your Doctor & your workplace. You communicate better with your friends & family to ask for what you need. You value the small joys of life & actively pursue them.

Having me around is not the end of the world even though it can seem like it at first and when things are not going according to plan. You’ve managed really well, and now you’re helping others to do so too!

Yours sincerely
Fibromyalgia

This blog post originated in an email to my list of subscribers. If you’d like to receive regular emails from my about all things Fibro please sign up here.

When things don’t go according to plan – it’s ok to be NOT ok

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It’s been a tricky couple of weeks, Fibromyalgia wise!

Life has been ‘life-ing’ as they say, and the last couple of weeks have been busy and hard. There’s also been some loveliness, with three family birthdays (including mine!), but even lovely things can tire you out, right?

It’s made me think about how unpredictable it is living with Fibromyalgia and what we do to manage it, when life throws you curve balls.

To be completely honest, I had a little wobble. Instead of kicking in with the things I know that help me, I lost sight of them for a moment, and consequently got quite overwhelmed.

It’s perfectly reasonable to feel NOT ok when this happens.

We’re not just affected physically by our Fibromyalgia, but also emotionally, mentally & socially, so it’s inevitable we won’t always handle a difficult times perfectly

My lovely Mum always used to say;

It’s ok to have a melt down, but don’t unpack your bags and live there!

So that’s what I did – had some time to ‘feel my feelings’ and live in my dressing gown for a bit. And it was lovely, I have to say – a kind of hibernation!

And then, I pulled up the plane and went back to my usual routine.

So..here’s some things that have helped my clients and myself when a Fibromyalgia melt down happens

  • Cancel what you can.
  • Adapt what you can’t – can you work from home, or meet that friend via zoom instead of in a busy cafe?
  • Accept help – and learn to be honest with the people around you so they will see you need it & offer to help
  • Try the smallest strategies in your toolbox (eg set a timer for a slow breath out)

Here’s what won’t help

  • Pushing through
  • Pushing down your feelings
  • Being mean to yourself about why you can’t be better, do better..
  • Wishing things were different – I can categorically promise you, this will not last forever.

Learning that ‘this too will pass’ and how to ride the waves of my Fibro instead of drowning has been the best lesson I’ve learned, without a doubt.

Recently I learnt about he ’90 second rule’ which I think could be really helpful for when you’re in the melt down phase and the thoughts are racing.

The gist of it is that a reaction to something only last 90 seconds in our body, biologically. Any reaction we have (negative or positive) is only made longer than that by our thoughts.

A suggested way to become more aware, and halt a negative thought loop is to watch a clock (preferably with a seconds hand) or a timer for 90 seconds. You observe the thought and then you have the choice to change it!

Here’s a more in depth explanation of the ’90 second rule’

I’d love to know what you think about this! You can let me know here 

 

Capability vs Capacity

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Thanks to some excellent advice from a good friend I’ve been thinking about the difference between capability and capacity.

Knowing the difference helps me to choose what I can take on and what I have to politely decline.

It’s really hard to see yourself as no longer capable when Fibromyalgia puts the brakes on your life.

If you’re like me and you’ve always been capable or high achieving at work, or in any role which is outcome driven,  this will be tough.
If you’ve always been ‘everything to everybody’,  this will be tough.
If you have achieved things that you are proud of, but can no longer do,  this will be tough.

It’s especially hard if your identity has been tied up in those capabilities or achievements.

I was incredibly career driven – a teacher for over 30 years, I’d written exams, curriculum standards, advised teachers in my subject area and taught new teachers their craft. The very definition of capable! Letting all that go was tough & I’ve had to re-learn what is important to me.

Turns out what’s important isn’t my achievements, it’s the things I value the most – connection, family, creativity, helping others – and having the capacity to do those things is vital. I’m taking more quiet time (hello jigsaws puzzles) between ‘doing’ to just ‘be’.

Capacity is changeable and fluid

I always assess how I’m feeling before I decide whether I can do something. When assessing my capacity I work out how taxing whatever I’m asking of myself will be, physically, emotionally and mentally. I also think about how doing it might affect me down the track.

AND I always remind myself that my capabilities have not changed – I’m just choosing to apply my skills in different ways, or saying, no thank-you, when it needs to be said.

If what you’ve read today resonates with you & you are wondering about what working with a Fibromyalgia coach would be like, we can meet for a chat. I’d love to explain how I can support you! You can book in for a chat here. 

I wish I knew then what I know now..

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Going at it hammer and tongs!

When I first got chronic pain and then my Fibro diagnosis I researched as much as I could about how to help myself get better. Once I was ‘armed’ with information I thought the answer to healing myself was approaching it as I would a full-time job – something I could ‘fix’ if I only tried hard enough and threw enough at it!

I set myself high standards and approached my healing with the same efficiency I would any other job. I knew what I needed to do and I did it full tilt! I tracked every symptom, logged everything that went in my mouth, tried every strategy and supplement all at once.

I wish I knew that my self care routine was unsustainable.. It was an inflexible regime full of self-chores, not self-care!

My pain and many of my fibromyalgia symptoms remained. I had no idea what I was doing that was working and what wasn’t, because I was in a frenzy..and exhausted by the effort.

And worse, I was stuck in a revolving cycle of hope and despair. Something would work for a while and then not – at which point I would become discouraged and blame myself for my lack of progress. Not a good place to be.

What I’ve learnt

In retrospect I understand that this was part of my high achieving perfectionist approach to life. I was going to lick this thing! Spoiler alert – I didn’t. Finally, and with the support of my coach I realised what I was doing and began to change my approach.

I wish I knew then that I couldn’t control every aspect of my condition and my life, but there are things I can do – and that small steps lead to great change over time.

These days I implement things slowly one at a time and only keep using strategies that work for my particular body. I stripped it right back and made small changes one by one – noticing the successes I did have, even if they weren’t perfect. And slowly they started to fit together into a manageable & flexible routine.

What works for me

I have lots of strategies in my toolbox – to mention just a few:

  • Calming my nervous system with research proven methods such as meditation, mindfulness, listening to music, and gentle movement (preferably outside in nature!)
  • Resting
  • Planning
  • Pacing
  • Slowing down – rushing is off the agenda, and frenzies are a thing of the past!
  • Setting boundaries

Over the next few posts I’ll break these strategies down for you, so you too can work on living better with Fibro. It can be done – one step at a time!

Practical Tips for Post-Surgery

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The Fibromyalgia Podcast Episode #142

Recently I was on Tami Stacklehouse’s podcast talking about having major surgery when you have Fibromyalgia. As part of our conversation I shared some practical tips for preparing and managing after surgery, which are below.

If you’d like to listen to the podcast, you can find it here – or you can watch the video here – I’d love you to hear/see what I had to say!

The MOST important thing: Keep everything you need close by

Get yourself a light bag – one that can be worn crossbody is useful if you’re on crutches. Having your ‘must haves’ nearby helps you keep your independence! Some things I had in my bag:

  • Moisturizer/Hand cream
  • Ear buds and earplugs
  • A pen & paper
  • Medications (in a plastic bag to make it easy to find the right one at the right time!)
  • A book/your kindle
  • A powerpack for phone/kindle
  • Tissues/Wet wipes
  • Lip balm
  • Glasses Cleaner
  • Travel sized toothpaste and toothbrush

Other practical tips (learnt by trial and error!)

To organise before your surgery:

Get a pickerupperer – not sure of the technical term! Something for retrieving items from the floor. I have been amazed at how many things either fall on the floor or live there in the first place. I got one for upstairs and one for downstairs so there was always one close by. Also handy for hauling up pants!
A device to help you put your socks on is also really helpful as is a long shoe horn  & both devices were a game changer for my independence.

Source a good sturdy chair and something to rest your feet on before your op – once you are up and about you’ll still need to sit down/rest often. A good chair and a foot rest (doesn’t have to be fancy) will help with posture and allow you to do lower body circulation exercises to help prevent blood clots.

Find somewhere to store your crutches & pickerupperer when you’re sitting down – they will fall over, a lot..My clever partner bought in a clay pot from the garden.

An electric heating pad is much easier to wrangle than a wheat bag which needs re-heating often (although they are helpful too) and a cold pack is good for your surgery scar.

Consider having some frozen meals prepared/bought before your surgery &/or if you can get a meal prep service for a few weeks this is a god send, because you probably won’t be able to cook for a while or even think about telling your caregiver/significant others what to do, if cooking isn’t their thing! The more nutritious and tasty the better – All that energy you’re using on healing means you will be hungry!

Get a stick on shower shelf if you don’t have one and a long handled sponge. Purchase wet wipes and dry shampoo – there are some great sustainable and non-perfumed varieties available – Wetwipe ‘baths’ rather than a shower every day will save energy as taking a shower is a huge energy sapper.

Ask someone to help you with the practical tasks you need to get through &/or pace yourself really well – you don’t want to be exhausted going in to surgery. One thing I found really helpful was to get someone else to help me to change the sheets. It’s a hard task for many of us!

Post-surgery tips:

Keep what you need nearby at night – including a torch in case you need to get up in the night You may get quite sweaty at night – two sets of sheets on the bed &/or cotton nightwear can be helpful. And sticking your legs out from under the duvet if you can!

Hydrate – This really helps to get those hospital drugs out of your system and helps with postoperative constipation (I’m a New Zealander, so Kiwifruit is my go to!)

Comfy clothes – try not to stay in your PJ’s all the time – it begins to get depressing after a while – throw on a nice scarf or put on some mascara to cheer yourself up

Yoga nidra (deep yoga rest) – there are plenty of these available online. Listening to a yoga nidra is really helpful for relaxing your body and preparing it for sleep

If you have a post-surgery exercise programme do your exercises after taking your pain meds and REST completely after doing them. A cold pack is a good add-on pain relief tool (don’t leave it on for more than 20 mins at a time)

MOST IMPORTANTLY – LISTEN TO YOUR BODY

No amount of pushing will help you heal any faster, in fact it is likely to make healing take much longer. Sleep as much as you need and look after your sleep hygiene so your deep sleep is prioritised. As my Mum used to say ‘when you’re sleeping you’re healing’ – it’s just that Fibro people really need to work at it!

Please reach out if you need to talk about these tips further – you can book a 20 minutes complimentary call here

If you are overwhelmed and don’t know where to start – try these simple strategies as a starting point.

If you’d like to

Take Care – I’m here for you!

Deb

What is Fibromyalgia?

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Fibromyalgia is a chronic pain & fatigue condition

Fibro fatigue has a number of root causes. There’s no cure – but it can be well managed with the right support. Your health professionals use clinical guidelines for making a diagnosis, but because it has similar symptoms to other chronic conditions it can take a long time to get diagnosed.

The Big Four

People with Fibro can experience many many symptoms, but these four are the most common:

 

Pain

Fibro people’s pain can take different forms at different times – aching muscles &/or joints, nerve pain & trigger points are most common. Lots of people with Fibro have related pain conditions such as migraines or auto-immune conditions. Pain is often ‘traveling’ & can appear in different parts of the body without warning. Fibro pain is connected to an overactive nervous system and one way to reduce Fibro pain is to get our nervous system to be less ‘on alert’.

It’s exhausting to be in pain all the time.

Fatigue

Fibro patients often suffer from chronic fatigue and low energy levels, which make it easy for them to become less mobile.It also makes it harder for them to exercise. ‘Crashing‘ after exercise is common so Fibro people often find it hard to get moving regularly.

Fibro Fog

Brain fog’ is a common side effect of lack of sleep and an overactive ‘fight or flight’ system. Brain Fog affects thinking, memory and concentration and makes completing everyday tasks difficult.

Unrefreshing Sleep

Fibro people don’t get the same amount of deep sleep as other people, which is like sleeping with one eye open – this lack of restorative sleep can cause problems in a raft of other areas to do with health and wellbeing. Nearly 50% of Fibro people have some kind of sleep disorder. Sleep apnea is common, and easily treated once diagnosed.

If this describes you – don’t despair – there is hope! You can break the cycle of pain and fatigue.

I coach women like you to break that cycle so you can get back to doing the things you love. I would love to chat with you to explain how and why I do what I do – I’m here for you! Book a time for a chat here

Take Care

Deb

 

 

I’m so pleased you’re here!

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About Me

I’m Deb and I’ve got Chronic Pain and Fibromyalgia. But there’s so so much more to me than that – although for a long time I forgot that was the case.

I have a loving partner of 35 years. I’m the mother of three adult children and grandmother of six. I’ve been a teacher for 30 years – now part-time and working with teachers. I’ve re-trained as a Certified Fibromyalgia Coach® and I do advocacy work (including research partnerships and developing peer support materials) for people with pain.

Pain found me after an accident 11 years ago – I’d fractured my pelvis, but it was 6 months before I was diagnosed – it was missed on an x-ray – and it’s safe to say that those months were not much fun, but that was only the start! From there I was funnelled into orthopaedics; two hip operations – one for a labral tear and a hip replacement two years later. 

A couple of years later – and still in pain I wrote The quiet room – musings on what I’d learnt in those five years. I’d love you to read it!

I’ve recently had my second hip replaced – 8 years after the first. You can read my tips for recovering from a major surgery with Fibromyalgia here.

Fibromyalgia Diagnosis

I was diagnosed with Fibromyalgia in 2020 – it took some time and a lot of doctors visits (again..) to get that diagnosis. Chronic pain is a Fibro symptom, but the ‘big four’ also include unrefreshed sleep, brain fog and fatigue. And that’s just for starters – many people also experience a range of other confusing and distressing symptoms.

I had a general feeling of unwellness – like having a low-grade flu, often with a sore throat. When I’m overtired or overwhelmed, have done too much, that’s my clue to ‘pull up’ before I hit the ground with a giant splat!

The Game Changer!

I’m one of the lucky ones – I’ve had excellent support from our local pain services team, my friends and family, a close-knit community of fellow chronic pain and Fibro people and advocates.

And yet I still struggled to live a balanced life. I was trying to do it all, be everything to everyone and I lost myself and my health in the process.

At this point – overwhelmed and out of options I found a wonderful Fibromyalgia Coach.

With time and support I have been able to heal and find hope again.

And so can you!  Get in touch today for a free discovery call & let’s get you on the way to feeling well!

Take Care

Deb