Rare Conditions – The Importance Of Supporting Mental Well-being

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 10.000 people are affected.

I have three conditions that fall into the ‘rare’ category, Ehlers-Danlos syndrome, Charcot-Marie Tooth Disease and Postural Orthostatic Tachycardia syndrome. I was at the front of the queue when they were handing them out, clearly! I now have my very own ‘rare’ children and work to support others with rare or chronic conditions as an NLP coach.  It is safe to say being a rare mum is just part of who I am.

One of the things I hear time and time again from other rare disease patients is how hard it is to secure their diagnosis in the first place, often taking years, sometimes decades to find out the name for their collective symptoms. Can you imagine that? Really. Think about how long it has been since the COVID pandemic started, feels like forever, right? Stuck in limbo, not having the answers, wondering what the outcome will be? Trying to stay positive but really a bit fed up. Imagine that is your health you are waiting for the answers to, in limbo, not knowing and probably feeling generally rubbish and scared.  Even the experts don’t have the answers. And it isn’t just months, but for years.

 

Picture of a zebra with the text 'Do you have a rare condition? The importance of supporting mental well-being'

 

There are many reasons why this is the case.

Have you heard the phrase ‘When you hear hoof beats, think horses not zebras?’ In medicine, the term zebra is used with reference to a rare disease or condition.  Doctors are taught to assume that the simplest explanation is usually correct to avoid patients being misdiagnosed with rare illnesses. Doctors learn to expect common conditions but many medical professionals seem to forget that “zebras” DO exist and so getting a diagnosis and treatment can be more difficult for sufferers of rare conditions.

True in my case, it was 26 years after I was first hospitalised unable to walk before I got my first ‘rare’ diagnosis, and a further 10 before the pieces were put into place for the second and third.

Often conditions have similar general symptoms making it hard to pin them down, this coupled with the fact that doctors are trained NOT to look for the rare conditions in the first place makes diagnosis times even more lengthy.

Waiting times to get to get to specialist services is often long, between 3-6 months is not uncommon, often longer, and when you do get there you may then have to be referred on to someone else.

We are human, so sometimes the symptoms we present with may not be typical. As these conditions are rare and therefore not something that practitioners are seeing day in day out, not being the ‘text book’ definition just confuses and delays things further.

In my daughter’s case having two conditions caused a non-typical presentation, delaying her diagnosis. Even though she likely had the conditions that I had.

Most rare diseases are complex and chronic, potentially life-threatening and go hand in hand with reduced quality of life. There is no surprise that there is an increase of mental health problems reported in rare disease patients and their families.

There is often a small network of care available as the condition is so rare, where patients often rely of charities for support and information.  Many doctors that you see will never have heard of your condition, let alone treated someone with it, so you will have to become the expert in your own condition.

There is also the problems associated with the visibility (or invisibility) of many rare conditions which often leads to misunderstanding amongst medical professional, family and friends.

Many people have a real adjustment period after diagnosis where they will experience a range of emotions as they come to terms with what their condition means for them and their life.

In a recent report on the mental health effects of living with a rare condition, campaign group Rare Disease UK found health professionals’ attitudes played a major role. The findings showed that 88% of patients and carers saying poor awareness of their condition by health professionals had a negative impact on their mental health, while 80% were negatively affected by health professionals not believing them. Read more about how medical gaslighting can fuel this here.

With the physical and mental elements of rare conditions are so intertwined it is my opinion that care should focus on supporting people with their emotional well-being and their everyday lives, not just on the physical symptoms.

Due to the nature of rare diseases patients are burdened by persistent symptoms which impact their quality of life leaving them overwhelmed.  If people are not supported, then this can lead onto anxiety and depression.

I believe that early support is vital. Support to manage the emotions surrounding diagnosis and acceptance and help developing a toolkit to manage their symptoms and overall wellness.  With flexibility, strength and resilience you are able to cope with the curve balls that your health will inevitably throw at you.

To learn to work with your illness not against it.

quote 'you need to learn to work with your health not against it!'

This view is echoed by baroness Blackwood the minister responsible for rare diseases, she has been lobbying to raise awareness after her own experiences during a 30-year wait to be diagnosed with Ehlers-Danlos Syndrome (EDS).  “Early diagnosis of a rare condition is extremely important. Not only does it end the often very stressful and exhausting diagnostic odyssey for a patient, it also means they can get the support they need much earlier, including for their mental health. We want to see a more holistic approach where treatment for mental health conditions is more closely integrated with the rest of a patient’s care.”

Patients that have had to fight hard for a diagnosis have often had to fight for the justification from professionals that their symptoms are physical and real. They may be reluctant to accept any help for their mental wellbeing. Either they feel they have come this far on their own so they don’t need professional support or they are firm in their beliefs that no-one is going to tell them it’s all in their head. Either way people that would truly benefit from support to process their emotions and thoughts surrounding the impact that their health condition has on their life and move forward positively, will likely refuse it.

This year the NHS has been stretched, at points often beyond capacity so while we are making progress on this in the UK I anticipate that it will take time leaving rare disease patients in limbo.

Coaching can bridge the gap in this service.  For pro-active patients willing to take control of their wellbeing a good coach can provide a non-judgemental space to explore emotions and ways to deal with issues that are stressful, frustrating or overwhelming. To help you to focus on what you are still able to do, rather than what you’ve lost and work with you to with you to identify and pursue new interests which will give you a sense of purpose and meaning. Sometimes, what you need more than ever is someone to support you with your medical team, helping you to prepare for appointments, ask the right questions and to understand what they tell you.

A coach is all these things and more and often obtaining this kind of support at the right point in the journey can mean that accessing mental health services further down the line may never be needed.

I love to talk about coaching and I am super passionate about advocating for rare and chronic conditions. If you want to have a conversation about how this may help you please book a call.

An Open Letter To My Charcot Marie Tooth Disease

Writing can help you to manage stress by understanding what’s going on in your mind + can be a healthy + intimate way to deal with your emotions about your health condition and what that means. I have always found the process extremely cathartic : here is a letter I wrote to my Charcot Marie Tooth disease.

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...

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...

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...

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...

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...

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...

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...

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...

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...

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!

When you join the Tribe you can find your SELF CARE GUIDE FOR SPOONIE’S available in the files to download.

The 10 minute guide to understanding that self care is far more than having a bubble bath and lighting a scented candle. Why it is important to plan for if you have a chronic illness or are caring for someone who does and, a handy checklist to get you started with great self-care practices to support yous physical and mental health and that fit who you are!

 

No Ones Life is As Perfect As Their Social Media Feed

No Ones Life is As Perfect As Their Social Media Feed

No ones life is as perfect an their social media feed

The explosion of social media over the last 15 years has opened doors for people in many ways;  It has the power to connect like minded people all over the world, at any time and it gives instant feedback and it increases your visibility. In the world of chronic illness it has given people the power to educate themselves about their conditions, to share and learn from each other’s expertise, allowing them to become truly empowered in their own health and wellness so that they can work with health professionals to manage their conditions long term. Personally, I have learnt so much online, instant access to information fuels my desire to know more, I have connected with some truly amazing people from all over the world that I wouldn’t have had the opportunity to do otherwise and it has opened doors for me to raise awareness about living with chronic illness in schools, hospitals and universities.

However, we must be mindful that this virtual world is just a snapshot of reality. People can be who they want to be.  The shiny pictures of your friends new house hide the crippling mortgage repayments that they struggle to meet each month.  The beautiful smiling family photos mask the fact that their marriage is being held together by a thread.  Make up and a smile can be a beautiful mask for depression, grief, chronic illness or pain.

Let me show you what I mean

I’m going to show you a peek into our lives to highlight that what you see on my social media feed is not always all that it seems.

I took some lovely family photos on a trip to London’s South Bank a couple of years ago. We look like everybody else, minding our own business and enjoying the sights. What those smiley photos of my family don’t show you is that the reason for our day out in London was another road trip to one of the city’s many specialist hospitals. An attempt to make a ‘day of it’ once we had travelled into town.

They don’t let you know about the conversations with my husband deciding if we should hire a wheelchair for the day for my son or if he could manage a few hours out with us without it. You don’t see that my daughter used her wheelchair for most of the day, but hopped out for the photo opportunities with her brothers.

The smiles hide the fact that my daughter is feeling poorly with a sore throat and by the end of the day she said her heart hurts just because she has stood up out of her chair.

You don’t know that the reason we had a few little sit downs along by the river was not the soak up the sights of the South Bank but to pace and rest on the way to our destination. Due to my son coming over unwell and clammy or because I just had to take the weight off my feet for a minute.

It doesn’t show in the photos that the motivational speech by the Lego artist at the start of the exhibition really hit a chord with me. As he talked so eloquently about his inspiration for the exhibition and that everyone is a superhero and can overcome life’s adversities. He could have been talking just to me.

My smile and make up mask the fact that every step I took was excruciating as my knee is finally falling apart and is bone on bone in the joint as I walk. And by the time we had looked around the exhibition the toes on one of my feet literally felt like they were on fire and cramping all at the same time.

The photos don’t show you that when we stopped for food the first thing that we ordered was tap water so three of could top up on our pain meds.

They do not show you that the next morning my daughter was on the sofa under a blanket with HR monitor on her finger and it kept jumping to the high 140’s as she was still feeling poorly and her autonomic system was just out of whack. Or that our son did not really surface for a few days as the inevitable pay off for our day pursued.

You see this is the reality of living with a chronic illness that social media rarely shows. I love the fact that we can share in life’s triumphs, that I can read positive things on people news feeds, smiling children, happy couples. Lord knows we need to celebrate those things more than most but we need to remember that an afternoon out doesn’t mean that we are cured, that we aren’t tired or hurting or going to pay terribly for it later.

A smiling face, great lighting, a photo filter, just like a shiny new car often masks the truth and that is never more true than in the world of social media. It is important not to feel threatened by or envious of the false reality that we see everyday.

Comparing yourself to others

We typically compare the worst we know of ourselves to the best we presume about others. We are all too unique to typically compare ourselves fairly to another. Other than never really knowing the full picture about someone else life, you must remember that you are unique, your talents, successes and value in this world are unique solely to you. How can that ever be compared fairly to someone else?

At the end of the day when you waste your time focusing on comparing yourself to someone else you are concentrating on the wrong thing. There is only one life that you have control over at the end of the day and that’s yours.

It is important to remind yourself that no-ones life is as perfect as their social media reels and no one is living an untroublesome life, weather you are close enough to know about it or not.

Finding inspiration and learning from others is wise, humans are amazing and there is so much knowledge that we can acquire from each other, but there is a fine line between this and self comparison. If you find that comparison keeps showing up in your life, a good place to start is notice the effects that this is having on you. Intentionally remove those thoughts from the inside out by reframing them in to the positive.

Work on comparing yourself with yourself. Spend your time and energy on being the very best version of you. Commit to looking after yourself physically, emotionally and to grow a little more each day. Learn to celebrate your wins without comparing them to someone’s shiny life on the internet.

Remember, no ones life is as perfect as their social media feed.

You may also like LESSONS I’VE LEARNT TO HELP ME LIVE WITH MY CHRONIC ILLNESS  or HOW TO SET GOALS WHEN YOU HAVE A CHRONIC ILLNESS 

Want to start with looking after yourself, but are not sure where to start? Join The Thrive Tribe on Facebook and download your free copy of my ULTIMATE GUIDE TO SELF CARE and HANDY CHECKLIST, details below.

girl pretending to be superman her wheelchair is out of shot. Social media does not show everything!
mum and daughter smiling and having a cuddle. Social media does not show the full picture, that they have just dosed up on pain meds
girl taking popcorn from a lego joker, what social media doesn't show is that her wheelchair is just out of shot.

Join The Community

The Thrive Tribe is a community of women who have chronic illness or are a parent to a child who has an illness or disability.

You may feel like no-one understands what its like living with your chronic illness or worrying everyday about your kids. That you are hanging on by a thread or the future may feel a little uncertain. In The Thrive Tribe we get that.

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

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

When you join the Tribe you can find your ULTIMATE GUIDE TO SELF-CARE and HANDY SELF-CARE CHECKLIST available in the files to download.

A 10 minute guide to understanding that self care is far more than having a bubble bath and lighting a scented candle. Why it is important to plan for if you have a chronic illness or are caring for someone who does and, a handy checklist to get you started with great self-care practices to support yous physical and mental health and that fit who you are!

 

Home Schooling During The COVID Lockdown – Top Tips To Survive!

Home Schooling During The COVID Lockdown – Top Tips To Survive!

Let’s face it, for all parents in the UK this January plans will have changed. The further restrictions placed on us all by the latest COVID lockdown means the nation once again will be faced with our children accessing learning from home.

Some of you will have started with your kids in school. Some will have known they were home for a little while but were planning to have them back in school within a couple of weeks. Others may have made the decision themselves to keep them home anyway.

Whatever your situation we are all facing the prospect of home schooling our children till at least February half term and unlike the first lockdown the weather is not on our side.

It can feel a bit like groundhog day.

The hardest things to deal with during times of uncertainty can be the unknown and the lack of control over the whole situation.

Four years ago my oldest son got sick with myalgic encephalomyelitis on top of Ehlers-Danlos syndrome and postural orthostatic tachycardia syndrome.

Since that point he has been home schooled or has had access to online learning as he isn’t well enough to attend school in a physical school building. His GCSE’s were planned to be taken from home long before the pandemic took hold. Lockdown has been going on in this house far before COVID.

I’d like to share what I have learnt over the last four years of having a child in lockdown so that you can survive homeschooling and to use the time to make the bond between you and your kids stronger than ever.

 

Communicate

Keep talking and listening to each other, even messaging your teenage kids throughout the day. Making time each day to be present with each of your children.

There is definitely a place for Disney + or bingeing on Netflix, if you have an important work call to take, or are trying to get dinner ready – you are not superhuman. At the very least ‘The Queen’s Gambit’ has inspired a love of chess in our house. But, ask yourself at the end of every day ‘How long have I truly been present with my children today?’ Listened without distraction, laughed, hugged?

When my children were little they used to love to do the ‘key jar’ activities at meal times, a jar full of random questions to get everyone talking and listening to each others point of view.

We still all have meal times together and I make sure that I spend time with each of them every day to chat doing something different – right now that’s playing cards, painting, completing physio exercises or checking on the chickens together.

However, when our son was first sick and bed bound with ME it would just laying with him while he slept so he knew that we were there. There are no right and wrong things to do, whatever works for your family.

 

Have fun

Right now it is really important to provide lots of light relief, all work and no play is no fun for anyone, especially children. There has to be a balance between the work you want them to do and opportunities to have fun.

Your child may have been sent home work to complete independently (or with your help) as opposed to online with face to face teaching support. The teachers will be providing worksheets and tasks to make your life as easy as possible but the activities may not be the most stimulating for your child. Remember right now most of this work will be revision, so don’t stress about it.

Inject some fun into the tasks that have been set. You know your child best so are best placed to tap into what they love and make the whole homeschool experience more interesting.  If they are learning WW2 how about researching the German officers with the best moustaches and write about them. If they are learning money in maths and have a slime obsession (if you are a parent to an under 10 you will understand), ask them to work out how much it would cost to make enough slime for their whole class. Extend them by asking them if they could they sell it for a profit? This can be applied to anything that they are learning.

It also involves having fun outside of whatever learning has been set. Playing games, having movie nights, holding a disco with a playlist of everyone’s favourite music, having an indoor picnic (or outside if you are brave enough), building a den, going for walks. Ask your children what they would like to do for fun with you, I bet that they have loads of ideas.

 

Be calm

Stay calm especially if your child isn’t. Your child may be feeling all different emotions such as highs and lows, anger, blame, sadness etc. Allow them their feelings and to talk them through but don’t force it. They may be a little unsure of the expectations on them at the moment, depending on their age they may be stressed out over exams or missed school trips. Stress and anxiety will show its self in different ways.

They may also not do exactly what you want them to do exactly when you want them to. Here it is important to be calm and step back and be aware of your own feelings before responding, you will be much more likely to respond with calmness and purpose. Good communication and setting clear boundries will really help.

 

Work together

This will help to get everyone on the same page and get clear on those expectations and boundries without setting strict rules. By creating action plans and timetables for their work it will help them be more independent and stay on track.

Is their a project at home your kids would like to do with you throughout this time? When my son was poorly with ME we made a vivarium for his lizard.  My husband built it, with our son offering support mainly in a supervisory capacity! Then our son designed his vision for the vivarium and together we built it. It took much longer than we initially planned because he wasn’t well enough to do much in one go but it got us together, it involved lots of problem solving and gave him a purpose. He was really pleased with the end result.

During this lockdown our middle son has built perches and roost ramps for our chickens and is learning how to wire electrical circuits to support his latest science module at school. These types of activities are great for problem solving and solution focussed outcomes. Whatever they do make sure that you celebrate their achievements.

 

Be the anchor

In times of change this is really important that you are the constant in their lives, so much of what they are experiencing now is different – they can’t go to school, the clubs they attended are all closed, they can’t see their friends or even their grandparents. Their home has suddenly turned into a place of work. They need you to be your normal funny, annoying, kind, (insert you own adjectives here) selves. They don’t need to see you stressed out by the latest news bulletin or yelling at the TV when the education secretary starts talking about schools.

Keep your routines as normal as possible and aim to keep things familiar. When our son was sick some days he would make it downstairs and promptly fall fast asleep on the living room carpet, he was 12 and as big as me at this point so any attempts to carry him back to bed were long gone. Life carried on around him mostly. His brother in and out from the garden shouting. I even have an image of his little sister dancing round him watching a DVD of his performance in a street dance show the year before and copying all his moves. I clearly remember laughing at the irony. But, life had to go on for everyone else, and those routines and normality were even more important during our time of uncertainty.

 

Boy asleep on carpet with his dog, he has been home schooled long before the COVID lockdown due to ME

Choose health

You know your child best and what makes them tick and now more than ever this is going to be important. Think about how much sleep do they need? If they are teenagers and don’t have live lessons first thing in the morning, would they function better with an extra hour in bed? Are they better with an early night and are most productive in the mornings? Understanding when they work best and getting to grips with exactly what they need to do can revolutionise the way they spend their time and increase their productivity. Leaving them more time to have fun.

Do they need lots of snacks? Are the the type of kid that needs space? Do they thrive on the company of others? Do they need to run off steam outside? All three of my children are very different and they all have very different needs, partly due to their different ages but mostly because they are very different people.

Are their any fitness challenges that they would enjoy? Would they like to try a new sport at home? Could you get them moving by setting challenges within a sport they already love? Could you get them involved in the kitchen?

 

To Sum up 

Learning is way down the list of priorities during lockdown. I am sure that all of my children will get done what they need to however I see the six things that I have listed above as far more important. I know that if they are in place learning will happen easily.

When my son was first sick an I was in survival mode and I didn’t always get it right. When I relaxed and focussed on what was important – him! It made all the difference to his health – mentally and physically and to his learning.

I would love to hear the ways that you have thought of to have fun and work together with your kids throughout the COVID lockdowns. Share your ideas you never know you may see them and be inspired by you.

 

 

Would you like to know how to get the best out of having the kids home during another COVID lockdown

Having  your child or children home without the time to properly plan for this change may feel overwhelming.

Getting a schedule together, keeping everyone motivated, managing all the things you usually have to do and God forbid actually trying to work from home.

If your child has a health condition or disability there will be another level to all of this. Missed hospital appointments or tests causing stress and now the responsibility of physio, occupational therapy or speech and language therapy may now fall solely on your shoulders. Which, let’s face it, is likely to make you feel stressed, overwhelmed and alone.

Imagine having a best friend by your side, who has been through all the things that you are experiencing, feeling all the raw emotions and has the answers?

Together we will will focus on the areas where you feel that you need support and create a plan to support you. So, are you ready to start achieving the best outcomes for you and your child during lockdown?

Join The Community

The Thrive Tribe is a community of women who have chronic illness or are a parent to a child who has an illness or disability.

You may feel like no-one understands what its like living with your chronic illness or worrying everyday about your kids. That you are hanging on by a thread or the future may feel a little uncertain. In The Thrive Tribe we get that.

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

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

 

How To Set Goals You Will Achieve When You Have A Chronic Illness

How To Set Goals You Will Achieve When You Have A Chronic Illness

Learn to be flexible and adaptable

Lets be honest, none of us will feel confident proclaiming that 2021 will be the best year ever. If 2020 has taught us anything it is to expect the unexpected. To set goals and achieve them adaptability is going to be more important now than ever. 

Having multiple chronic illnesses teaches you to be resilient. You never quite know how things will be; if you will wake up with a dislocation, get a migraine attack or even have to sit down in the middle of The Co-op because you are going to pass out. It teaches you flexibility but it also teaches you to grasp life’s opportunities when then come your way.

To think at the beginning of 2019 we had no idea that we would move out of London and by the end of the year we would be living a new life in the country. It had been a dream for us for years and 2019 was the year we made it our reality.

At the beginning of 2020 I had absolutely no plans to become a certified life coach and NLP Master practitioner. The COVID pandemic absolutely gave me the opportunity for that to happen by freeing up the time, taking all training online (meaning no travelling to London or Bristol) and meaning that the kids were safely looked after at home while I qualified from the sanctuary of our home office. I am so thankful that I took the opportunity and stepped out of my comfort zone and into the world of coaching so that I can support people like me with chronic illness.

None of us know what is around the corner for us in the year ahead. To set goals that stick it is important to be flexible and adaptable during these uncertain times.

 

To set great goals you will need to be clear on the vision for your life?

Even with the unpredictability of the world in which we live right now you can absolutely think ahead with a clear plan about where you want to go. To have a clear vision for your life and set intentions for yourself that fit with what you think and feel. It gives you the motivation to keep moving forward if things get tough and is the force that will fuel your motivation.

I will not be proclaiming intentions for the year ahead that I will have forgotten about in a few weeks time instead I will be looking at my life as a whole, where I am now and where I want to go. Then I will set myself goals that fit with my overarching vision. It’s amazing how motivated you are to achieve your goals when they connect with the overall plan for your life and who you are. I will be doing things every single day that really fit with who I am creating new habits that lead me to the place that I want to be.

If I carry on doing the same things every day that I do now, nothing will change. I need to create new habits and retrain my brain to do things in a different way if I want change to be lasting.

 

To achieve your goals keep moving forwards even if its baby steps

I’m also a realist. I know that things may change along the way that will be out of my control and I may have to adjust my sails a little. Living with unpredictable chronic illnesses has taught me that my life and my health has a habit of throwing me a curve ball. It’s like my condition enjoys putting me in my place from time to time and showing me who is the boss. If things don’t work out I may have to pause for a while or find another way. I may also find that I may have to learn new things or ask for help to get me to where I need to be.

Whatever this year brings I know that it will be important to keep moving forward, even if it’s baby steps, because if I take one step each day I will be in a very different place by the end of the year.

If your goals are truly connected to who you are and your deep rooted values staying on track when the going gets tough and staying committed to your vision will be so much easier.

 

When it comes to achieving your goals the devil is in the detail

The key to setting goals that stick is to get specific. Often the people set vague intentions without a plan to get there, to be ‘happier’ or ‘richer’ is just like setting your Sat Nav to ‘somewhere nice’ and the brain doesn’t know what to do with that information.

That’s why after you have carefully considered your overall vision it can be helpful to break your goals down into the different areas of your life so you can get specific. When you drill down on exactly what you are going to do, when you are going to do it and the exact steps you need to take it is like putting the exact destination into your Sat Nav and your brain knows what to do with that information.

 

Key takeaways to set goals that you will achieve this year, chronic illness or not

Goals have to fit with where you are, who you are and where you want to go in life. To stay 100% committed and on track you have to be really connected to why you have set the goal for yourself in the first place.

You have to understand that action produces results, and if you want results, you must take action. No matter how small, you just have to start.

We all appreciate now that life has a habit of trying to get in the way, but it will be up to you not to use those set backs as an excuse to give up on your hopes and your dreams, see it as a way to learn and do better next time.

The bottom line is incorporating even the smallest goals and making them habits will transform your life in some way. You can pick and choose which best suit your needs but the key to success is consistency. Turning your goals into habits will transform your overall wellbeing in ways you’d never imagined and you’ll feel unstoppable.

 

Ideas for goals in the different areas of your life to improve your overall well-being

Here are some ideas to set goals in the different areas of your life to get you started.. be specific and connect to why you want to make the change in the first place.

Money/ Finances

  • Decide how much you want to earn in 2021 and work out a plan to make that happen (for example – how many clients/orders/treatments etc that works out at per month)
  • Look at your finances work out a plan to save money each month – where can the savings come from? How much can you save?

Home Environment

  • Decorate a tired bedroom by the spring
  • Move home to a new area
  • Get a cleaner
  • De-clutter
  • Improve the light

Career/ Personal Growth

  • Read a book a week or 20 pages a day
  • Sign up to learn something new
  • Start selling something that you make
  • Write a book (perhaps break it down to a chapter each month)
  • Apply for a promotion
  • Enhance your networking skills
  • Improve your public speaking skills by signing up to a course or reading a book

Physical Activity

  • Get 15 minutes of fresh air every day
  • Spend 20 minutes outside in nature every day
  • Dedicate 10 minutes a day to stretching
  • Go for a 15-minute walk before work 5 days per week
  • Aim for 10,000 steps 5 days each week
  • Engage in moderate intensity physical activities 5 days per week for 30 minutes
  • Take a 5-minute walking break every hour during the workday
  • Use an activity reminder app to help you sit less at work
  • Stand for phone calls
  • Walk as you talk

Healthy Eating

  • Prep healthy lunches for the week every Sunday
  • Pack a healthy lunch three days per week
  • Create a meal plan once per week
  • Start your day with a healthy breakfast each day
  • Add an extra serving of fruits or vegetables with lunch and dinner
  • Eat two servings of dark leafy green vegetables such as spinach, broccoli, kale, romaine, etc., three days each week.
  • Avoid added sugars in foods two days each week
  • Go vegetarian one day per week
  • Pack a healthy lunch for work or school three days each week
  • Drink a glass of water before each meal

Stress Management

  • Maintain a calendar to help you manage your time
  • Develop a morning or evening routine
  • Write out and prioritize your tasks each week
  • Create a daily meditation routine
  • Keep a gratitude journal and write about all of the things that you are grateful for every day
  • Go electronics-free three evenings per week
  • Get adequate sleep
  • Engage in relaxing hobbies such as gardening, reading, dancing, or other fun activities

Fun and Recreation

  • Plan a trip to take once we can travel freely again
  • Look for a new class to join and dedicate time each week to it
  • What do you love to do? music, art, craft? Set aside an hour a week to do something that you love
  • Have a regular date night with you partner or games night with the kids

 

 

Join The Community

The Thrive Tribe is a safe place for women with long term, chronic illness or disability (or those who are carers of kids with chronic illness). 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! To feel like you belong in a community that has your back.

 

Goal Setting Sessions

Join me this for 2 x goal setting sessions and set intentions this year that fit who you are, light you up and that you will actually stick to! Let me teach you how to adjust your sails when things change in your life so that you can keep moving in the right direction.
Want to know more about what makes this different? Check out the link to the January goal setting sessions here Slots filling up fast, limited spaces available ❤

 

6 Top Tips To Manage Chronic Illness Crashes

6 Top Tips To Manage Chronic Illness Crashes

When you live with chronic illness ‘crashes’ are inevitable no matter how hard you try to avoid them.

Getting the balance between doing too much or too little is like walking a tightrope.  Mostly for me a crash comes when I do too much for too long.  I’m not stupid and I have lived with this for long enough to recognise the subtle signs that my body gives me, trying to warn me to slow down, to take a breath, to re-charge.  However more often than not I ignore them or think that just this once it will be OK if I push through.

Over the years my ability to manage my crashes has improved but every so often my body will throw me a curve ball.  It’s like it trying to prove who is really running the show.

I’ve learnt that the only way to avoid a monumental crash is respect the boss, to listen to my body and treat it with respect.  To manage, to pace and to keep all the plates spinning delicately in the air.

 

How the holiday Season may effect your chronic illness symptoms

The holiday season throws another element into the mix, although many of us will be experiencing quieter Christmas celebrations this year due to the COVID pandemic. Other factors may have an effect on how well you manage your symptoms and how you feel.

  • Routine. Extra time off, late nights or lay ins, even different meal times may impact your symptoms.
  • Sleep. Your sleep pattern may alter because of those late nights and lazy mornings but pay attention to the other factors may also alter your sleep during the holiday season, including the food you eat, alcohol, routine and how much energy you use during the day.
  • Food. The food that you eat may be different to usual over the holiday period, this can affect symptoms
  • Alcohol. Now I’m not saying that you shouldn’t raise a glass with you Turkey this Christmas (I’m not the alcohol police!) but its really important to be aware of the medications that you take and the possible interactions.  Also how it affects your sleep, your mood and your symptoms.
  • Travel/ socialising with friends. Depending where you are in the world this year you may be allowed to meet up with family and that may involve travelling, which can make you more tired.  Coupled with socialising and catching up with family and friends this can take its toll on how you feel.

6 Signs that a chronic illness crash may be coming

Here are the top 5 ways to spot a crash is on its way and try to do something about it before it floors you.  Hopefully by recognising the signs and acting on them a crash can be lessened or avoided.

  1. A really big appetite.  For a few days before a crash hits it is like my body needs extra fuel, I often crave sweet, empty carbs.
  2. Being teary.  From crying at Countryfile’s stories promoting the big Ramble for Children in Need watching the Undateables (I love a happy ending) to welling up when I have to ask my kids to do their HW for the 11th time.
  3. Brain fog. Why did I want to put the milk away in the oven?  I have to think extra hard when I’m doing something as I lose my train of thought really quickly.  Focussing on reading is impossible and I forget why I have walked into a room in the first place.
  4. Being cold.  I can’t regulate my body temperature at the best of times but when a crash is coming I’m cold all the time.
  5. Breathlessness.  From walking to the kitchen to pop the kettle on to sitting and having a conversation.
  6. Poor sleep. When a crash is coming I become tired but wired.

6 Things to do to minimise a chronic illness crash

  1. Rest. Simple to say but impossible to actually put into practice when you have demands placed on you from family, friends, work or study. Resting completely it is the best way to stop the crash getting worse. Rest now.
  2. Act immediately. When you know (and in my case finally admit to yourself) that a crash is coming you have to stop. The sooner the act the easier that it is to minimise the fallout. I have been at my poorliest when I have pushed and pushed through.
  3. Delegate. You are not invincible and not everything is ‘your job’. My problem is that my family don’t always do the things that I ask them to do, a) to my standard, or, b) the second I ask them to do it – which just stresses me out! but I have to learn that the house will not fall down and I will become well much quicker if I let them help. And it’s never a bad idea to organise my lazy kids with some chores.
  4. Prepare. Think ahead – A little time spent planning things in advance can save heaps of energy later. From online shopping to planning your tasks and energy over a week. If you have something unavoidable to do plan good rest before and after.
  5. Ask for help. There is nothing wrong with asking for help, yet it is the thing I struggle the most with. Start with those people that you know best and that love you dearly. You might be surprised at how willing they are to lend a hand – I always am. From doing the school run for you or making dinner to doing the ironing. Think about what will help you the most and if people offer without you having to ask, say YES!!!
  6. Pace yourself. To get over a crash pacing is key and pulling back from non essential activities will help you to recover more quickly. I try to look ahead for a few weeks and plan my energy levels: I never have two busy days in a row, I plan plenty of time to recover from activities, I cancel non-essential activities or appointments and I only socialise with people that make my heart jump or if it’s something I’m really looking forward to.

I hope it helps you to recognise and act on the warning signs that a crash may be brewing, and to get back to normal more quickly (whatever normal is)!

 

If you enjoyed this post you may like…

Surviving a crash if you have a chronic a chronic illness or The signs or carer burnout and how to fix them.

Join The Community

The Thrive Tribe is a community of women who have chronic illness or are a parent to a child who has an illness or disability.

You may feel like no-one understands what its like living with your chronic illness or worrying everyday about your kids. That you are hanging on by a thread or the future may feel a little uncertain. In The Thrive Tribe we get that.

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

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

When you join the Tribe you can find your ULTIMATE GUIDE TO SELF-CARE and HANDY SELF-CARE CHECKLIST available in the files to download.

The 10 minute guide to understanding that self care is far more than having a bubble bath and lighting a scented candle. Why it is important to plan for if you have a chronic illness or are caring for someone who does and, a handy checklist to get you started with great self-care practices to support yous physical and mental health and that fit who you are!

 

Lessons I’ve Learnt To Help Me Live With My Chronic Illness Long Term

Lessons I’ve Learnt To Help Me Live With My Chronic Illness Long Term

Chronic illness has been a part of my life for as long as I can remember.

When I was diagnosed with my first big diagnosis in my 30’s, Charcot Marie Tooth Disease (side note – it’s nothing to do with teeth) it floored me.  I just second guessed everything and constantly re-examined my life and my future.  Life spiralled. Outwardly I was still that same person but internally my mind was a mush, like a swan on the surface but frantically paddling underneath just to try to stay afloat.  I lived… but in a blur.  My career in teaching was over and I constantly questioned, ‘Who was I now?’ as so much of who I was was bound up in what I did.

It was a tough time.

Slowly I learnt, I trusted, I talked, I became empowered and I focussed on what I could do not what I couldn’t. I found work arounds for things to make my life easier.  I began to own my life again.

Ultimately, I changed my mindset.

Most importantly and life-changingly, I learned how to not let my chronic illness, which had been the focus for so many years, become my story – the story of someone who shirked away from her own life because she was diagnosed with this stuff and the world now owed her something for giving her that to carry. I looked forward, I focussed on what I wanted and I went out there and got it.

No more excuses.

I’ve learnt a few lessons along the way that I’d love to share with you, this being one of them, you have to focus on where you are going not where you have come from.

 

 

7 Lessons that I have learnt

 

1. Learn about your illness so you feel empowered and know how to help yourself. This can help you in doctors appointments advocating for yourself and discussing treatment options. It also helps you to manage and understand your symptoms for yourself and communicate what you need to to family, friends or colleagues without feeling awkward.

2. Beware of social media groups. There are some great people online, I have connected and built friendships with fabulous people from all over the world that I have never met. But there are also people who want to compete, if you ask a question seeking support, their symptoms will always be worse, their life harder.  It’s really important for them to let everybody know just how bad everything is for them. Be careful of falling down this rabbit hole. You can’t fix everybody.

3. Surround yourself by people that care. This sounds simple but your circle may get smaller when you are diagnosed with a chronic illness, that’s just how it is. The people that you once had wild nights out with will drop off the radar when you aren’t showing up anymore. You need people in your life that will listen and support you but also will talk about other stuff, make you laugh, have fun. There is so much more to life than your diagnosis and you need people that will help you keep things in perspective.

4. Practice self care. This means eat well, have a good sleep routine, get fresh air, switch off, move, laugh and nourish your soul. Balance and self care starts with YOU. You need to learn to focus on you, to be aware of what you want, what you don’t, learn to love yourself well and ditch the idea that self care is selfish. It’s not. When you have balance, you can divide your time and energy across all areas of your life, ensuring an appropriate focus on family, learning, spirituality, and career, etc and nurturing your overall wellness.

5. Set boundries. Boundries are super important when you have a chronic illness. Firstly it is important to recognise anything that may trigger a flare or make symptoms worse and anticipate them. You need to be clear about your needs and communicate them to the people around you, your friends and family are not experiencing your illness as you are and it is your responsibility to let them know how you feel and ask for help if you need it. This includes saying no to things if you need to. It is about giving yourself permission to do what is best for you.

6. Focus on what is good in your life. The saying ‘where your attention goes your energy flows’ is very true and it is important to remember it. When you are surrounded by doctors appointments and feel rubbish it that understandably where your focus is, I get it. But, the more that you focus on how rough things are, the worse they get. Think about what is good in your life, what you are good at, what you enjoy and do more of it. Your symptoms may not improve but the way that you feel about your diagnosis and your life will.

7. Look forward. Focusing on how things were, the job you had, the plans you made that seem unachievable now, will not help. Stop. Start from where you are today. What do you want? Get specific, what do you really want in your life now? In three months time, six months, three years? What is important to you? What do you really value? If you think about it it probably isn’t that high flying job that payed mega bucks but you hated, where you were burnt out and never saw your friends, even for coffee. Focus on the small things that will help you reach your bigger goals and start now. No more excuses.

 

Working with a coach can be really beneficial to help you on this journey by identifying the roadblocks that are stopping you from achieving your desired outcomes. Beyond this, NLP lets us delve deeper and identify the root cause of these roadblocks, which when removed, result in a more profound transformation. Do you want to chat about how positive mindset coaching could impact your life? Book a call.

Join the The Thrive Tribe on Facebook – A brand new private group where I will share more personal tips about how to live well with chronic illness and there will be weekly challenges to help you think about your life in a different way.

Pin It on Pinterest

Pin It on Pinterest

LET'S CHAT