6 Top Tips To Manage Chronic Illness Crashes

6 Top Tips To Manage Chronic Illness Crashes

by | Dec 17, 2020 | Health

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

by | Dec 9, 2020 | Health

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.

Self Care Is Not Self Indulgent

Self Care Is Not Self Indulgent

by | Dec 2, 2020 | Self care

We live is a society that loves achievement, qualifications and success.

Many people work extremely hard to get there – often ignoring the warning signs that their bodies are giving them. In this fast paced and driven world if you stopped and asked your self ‘What do I actually have to give?’ the answer is often ‘Not much!’.

When your energy goes on surviving there isn’t much left at the end of the day for thriving.

But, what is the point of success when you feel overwhelmed, fatigued and don’t have any time to spend with family and friends or doing the things that you love? Or you are grumpy and tired when you do see them!

Self care is often viewed as a luxury, high achievers are pre-programmed that they should just push through if they stand a chance at being successful. Over time this often creates stress, anxiety or illness. When you are managing a long term health issue and trying to live, work and raise a family then something often has to give. And, that something is usually self-care.

We often operate from patterns which we have created from our past life experiences and keep acting in the same ways without realising it. The first thing to do is to stop and re-calibrate, address self-care; unplug from technology, have some fun, practice mindfulness. (Download the checklist for more ideas). Then recognise the patterns that are helping you and contribute to your goals and let go of the ones that aren’t serving you anymore.

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 and to learn to love yourself well.

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. Priorities are an important part of developing a balanced life so energy can be divided in a logical way and the important things can get done.

However, when balance falters, parts of your life remain unnourished. They begin to fail, impacting other areas, and overall wellbeing. You begin to burn out and your health can suffer.

When you have a chronic illness, maintaining balance while managing your health condition can feel like an impossible task, it is easy to resort to different coping strategies just to try to manage your symptoms, hospital and doctors appointments let alone try to work and live. If you step back and look at your life, you can often see the warning signals — overeating, over-drinking, lethargy, stress and irritability they are all are signals that change is needed.

The good news is if you recognise them then you can do something about it! You have what it takes to make your life more complete. So, perhaps, most surprisingly, the crucial takeaway is not that you have the potential to put in place a routine of self-care, but that you deserve it.

Download the free self care checklist here

Energy Vampires

Energy Vampires

by | Nov 26, 2020 | Time and Energy

 

The power is spending time with people who lift you up.

I have found that over the years I have naturally gravitated to the people that energise me rather than drain my energy.

Now I’d say that it has become an active choice.

Have you ever thought that the people you spend time with will influence the way you feel?

We have a finite amount of time and energy each day and while we have no control over the amount of hours in a day, we do have control over our energy levels. Eating well, staying hydrated, exercising, getting enough sleep and even stress can have a massive impact on your energy levels but have you ever wondered how the people that you spend your time with are impacting how you feel?

We all can think of that one person in our life that after we’ve spent time with them we feel physically drained. We call these people ‘energy vampires’ because they literally suck the life out of you. For some this is just a temporary thing, they may be going through a divorce, have lost their job, experienced loss, have a diagnosis to get their head round. We get that right? Everyone is entitled to their emotions and to process the things that are happening in their lives. These are just temporary ‘energy vampires’ and they may need you to step up and give them a bit of support.

What if they are just the kind of person that seems to like moaning? Even when you try to present them with another viewpoint they can’t see it, and they are not willing to change.

Every, single, thing, is negative.

It is best to distance yourself from these kinds of people.

These people may be colleagues, friends or the person that serves you at the local shop but they may also be family members or a partner that aren’t so easy to shake.

By putting some space in between you and the people that drain your energy you will be looking after yourself and protecting your energy levels. With more vitality left for you and the things that you want to do and more time to spend with the people that lift you up because we all want that right?

The people you spend time with can also shape how you think…

The people you spend your time with don’t just shape how you feel, that energy can bring you down and start to shape how you think.  Imagine preparing for an interview for your dream job surrounded by people who zap you. Then visualise preparing for the very same interview surrounded by people who believe that you are made for the new role.  Imagine what you will be capable of if you believe that you can do great things.

Remember, the life you seek depends on the company you keep.

 

Not sure how to shake the energy vampire in your life? Working with a coach is a great way to look at where your energy goes each day and how you can better manage your time and enthusiasm to build the life that you want.

Interested?  Book a call , we can have a chat and I can answer any questions that you have. 

 

   Sarah xox  

 

 

Shoes

Shoes

by | Sep 14, 2020 | Humour

Shoes… shoes… shoes
Shoes are a girls best friend, you can never have enough, they can make you feel ten feet tall, on top of the world. It’s true for some, I once had a friend that would put on her heels on a Saturday night and would immediately lose a stone.

Give a girl the right shoes and she can conquer the world. 

Marylin Monroe

But these women clearly don’t have my feet!

My life has been blighted by shoes.  When I was six or seven I can remember sneaking out in my friends ballerina pumps, I couldn’t really walk in them, the fact that the memory is so vivid thirty years on proves that! For once I wasn’t walking around in my sensible Clarks, T bar sandals.  I understand that my mum was trying to look after my feet, she knew what I needed even without a diagnosis to tell her, no doubt she could tell by the way that I walked and the amount of times that I fell over fresh air but as a little girl I just wanted to be a princess.

Now I should have known things weren’t quite right when as kids we decided to catch the bus to the local ice rink to go ice skating, I would have been about eleven.  I laced up my boots and it is safe to say that I couldn’t even stand in the boots off of the ice.  Supported on both sides (putting a new meaning to the song lyrics ‘lean on me’) I made my way to the rink.  I tentatively stepped a toe onto the ice, I remember standing glued to the boards as my friends skated off one by one, by the time they had done a lap I had conceded and hung up my boots.  I like a challenge but I’m a realist.

 

Then there were the shoes that I tried to walk in, when I was a teen and rebelling against my God given feet, heels…. No sexy Louboutin’s going on here, Oh no! Chunky thick heeled, preferably lace up (to offer more support) boots and they had to be boots or I wouldn’t have taken a step in the first place.  I lost count of the amount of times I would fall walking into a club or the dance floor.  It wasn’t always the shoes to blame, sometimes it was a dislocation, sometimes I just couldn’t tell I was falling until I hit the deck so made no attempt at all to save myself.  But I remember fondly (and so will my friends) some good nights out by the magnificent falls.

 

The shoe mistakes, there have been many.  Years ago I used to long just to walk in nice shoes, I would try them on in the shop like Cinderella when really with my feet I was more a kin to one of the ugly sisters.  If I could get the shoe on my foot I would convince myself that they would be okay, only to realise when they had been sitting in a box for a year that they were another shoe mistake. As the years have gone by I am much less fussy about what they look like, I am a realistic, I reside in one brand of super wide flip flops in the summer and boots form autumn through to spring.  I grieve when a trusted pair of boots finally fall apart like I’m losing pet that has become part of the family.  As I get older my expectations have shifted somewhat, I long now to be able to wear a pair of converse pumps in the summer or flat sandals to a wedding.

There was the time my son saw a pair of stiletto heels, he would have been about two and a half and we were visiting my friend, her shoes sat neatly on the stairs after she had worn them out the night before.  At this point in life I think I had given up on trying to walk in any type of heel at all, he had never seen a pair of shoes like that, I remember the look on his face as he questioned what they were, to him they really were like a prop from a fairy tale.

I have become a master at dressing around my feet, my outfits wouldn’t necessarily be the ones that I would choose if I could put on any shoes and step out in them but I’ve learnt the art of compromise. Skirts with boots and tights.  A floor length gown to a black tie event (with no split) so no one can see what is lurking underneath and in my younger days I was an expert at drawing attention to other areas with the clothes that I wore so no one even noticed my shoes!!

Twenty years ago when I first met my husbands family they thought that no one could possibly top my sister-in-laws lovely feet but I stole her crown clean away, and no one has come close to it since. I hope that my daughter never does.  She is already beginning to understand the pain that shoes can bring as she longs to walk in a summer sandal or a normal school shoe but is resigned to high top trainers and boots even in the 30 degree heat, just to keep some sort of mobility.  She knows how to rock her Dr Martens with style and has the smile and the wit to match.

Shoes will never be my friend as I struggle to find them, they cause me pain and they dictate the clothes that I wear but I will endeavour to stress less about them as time goes on.

Give a girl the right attitude and she can conquer the world. Shoes are optional. 

Sarah Wells

I’d love to hear you comments… does your attitude give you power over your shoes or do your shoes have power over you? It’s a fine line with CMT and EDS.

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