How to Deal With People Thinking You’re Lazy When You Have CFS

Oct 262015

I’ve received lots of emails about this recently and it’s a recurring theme of conversation with my coaching clients, and so I just thought I’d put my thoughts into a post.

Along with all of these lovely choice phrases, “Why are you so lazy?” or words to that effect, might have been aimed at your recently or during your illness. This hurts…I mean, really, really stings.

Up until about x-days/weeks/months/years ago, you had it all figured out. You had a job/income, you had some form of social life, you were frequently in touch with your family and friends, you could string a sentence together and things were generally pretty good. But now you can’t move- you can’t remember the last time you opened the curtains (never mind went outside), you feel incredibly guilty for not bringing in a salary and you feel as if your friends can’t be bothered with you any more. Now, to top it all off, you’ve got people thinking you’re lazy when you have CFS!

im_not_lazy_im_sick_shirt-p235055099763546669ci54_325

Photo taken from here

Ooooh yep, I hear ya! I’ve had this and all you want to do is scream and shout, and let them know what’s really going on. You’ve told them over and over, but they still don’t get it. Luckily, there are some things you can do to make everything a little bit smoother for yourself and others.

+ Show them this article. If they still haven’t changed their tune, show them this one or this one. If you still don’t get a flinch out of them after this, ask yourself some serious questions.

+ Know that if you were going to invent an illness, CFS/ME would be it. It’s almost like a crazy junior school Biology project:

Teacher: “Ok, everyone- settle down. Now what I want you to do is work in groups and invent an illness. You must describe it and then present it in front of the class. You have 10 minutes- off you go!”

Student 1: “I know! How about something where you sleep for, like, 22 hours a day- like Sleeping Beauty!!”

Student 2: “Yeah, and you can’t go to work because you’re too busy sleeping and lying in bed and people have to feed you and stuff?!”

Everyone in group: “Yeah, that sounds amazing!!”

See the humour in it- it might just get you through those “I really want to break your arm right now (if I had the energy)” kind of moments.

+ The dictionary definition of ‘lazy’ is: “averse or disinclined to work, activity, or exertion; indolent.” I have never, EVER met anyone with CFS/ME who is lazy. Most of the people I’ve spoken to are Type A Personality people and we do not do lazy. Perfectionist, yes. Lazy? Nooooo. People relapse with CFS precisely because they are not lazy- that’s half our trouble. We want to contribute to the world, to our lives, and so we push on and then make ourselves worse. Don’t you dare talk to me about laziness….! (Sorry, rant over!)

+ Understand at a cellular level that there is absolutely no way they can understand what you’re going through. No way. People can empathise, but they’ll only know it if they’ve been through it themselves. This might make you feel lonely or disconnected from everyone for a while, but it’s only temporary. Know that they just want to see you better, healthy and happy- ask for their help, even though they don’t understand this craziness. You look fine, so of course, they’re a bit confused (I remember wishing I could’ve broken my arm or something instead of having CFS- at least people can physically see there’s something wrong with you, right?)

+ You are still you. You are still you. You as a person and a beautiful soul have not changed. Your body is just taking some time out, because it needs it. Once you know who you are, and really know it and own it, those lazy comments will bounce right off you.

Smile, suck it up for a bit longer and know ultimately that these comments will stop. People will see how sick you are, not lazy, and will want to help in any way they can. Show them this website, point them to my Facebook page and show people that you’re not the only one going through this ‘laziness epidemic’.

I’d love to hear your comments below- have you ever been accused of being lazy?

Love, not laziness,

Katie xxx

Are You Part Of The Type A Personality CFS Trend?

Oct 042015

Over the years, I’ve read numerous books and reports on the ‘type’ of people who seems to become ill with CFS/ME and many people who do are of what’s called the Type ‘A’ Personality.

Are You Part Of The Type A Personality CFS Trend?

You are Type ‘A’ Personality if you are/were:

ambitious
self-critical
driven
hard-working
easily wound-up
prone to stress
competitive
time-urgent
sometimes hostile and aggressive

Type ‘B’ Personalities tend to be more relaxed, able to express their feelings easily and are more able to do one thing at a time. Type C personalities are generally ‘nice’ people who work hard, but don’t let stress take over their lives. The diagram below explains the Type A and B differences perfectly.

Diagram taken from here

I don’t know about you, but I am definitely a Type ‘A’ Personality. I was a straight ‘A’ student, involved in every single school activity going and never, ever got sick. I put a lot of pressure on myself to be perfect because I knew I could be(!) and because it was expected of me. Although I don’t tend to identify myself as being hostile or aggressive, in a way I believe that some of this anger was directed internally and I buried it for a long time. but I’m definitely prone to stress and used to be massively self-critical, both before and during the early stages of my illness.

At present, there doesn’t seem to be any scientific reason why there is a Type A Personality CFS trend- some people claim it’s due to the fact that Type ‘A’ people might have more of the stress hormone, cortisol, in their body. But, I have another theory as to why I think Type A people are more prone to sickness, therefore opening themselves up to illnesses such as CFS.

Before I became ill, I never, ever took any time out for myself. Even when I had bad flu or a cold, I would plough on and not take being ill into consideration. In some ways, not focusing on your illness can mean that you heal more quickly, but not taking time out to look after yourself when you’re feeling run down can leave your immune system feeling completely depleted. After ignoring ‘minor’ illnesses for so long, your body can just crash, thereby forcing you to look after yourself and take time out. I had a few warning signs before I became really ill, but I ignored all of them. The exact same warning signs popped up just before relapses, and again, instead of listening to my body, I just completely ignored them.

As humans, we need rest. We’re designed for rest, not only when we’re sleeping, but at certain times of the day and at certain times of the year. Unfortunately, because we’re constantly surrounded my technology, computers and smart phones, our bodies ignore the natural light outside and we become completely out-of-sync with the seasons. But rest is designed to restore and repair our bodies, and if we ignore it, our body gives us signals that we’re ignoring it in the form of pain, soreness and illness.

Meditation, yoga and focussing on the present have really helped me to work with my Type A personality, as well as learning to really rest properly (no TV, no jumping off the sofa to do something, no housework- nothing).

How about you? Are you a Type A personality as well?

Love and living life slowly,

Katie xx

A Letter to Chronic Fatigue

Sep 152015

This post is inspired by the beautiful and revolutionary Danielle LaPorte.

love letter Picture taken from here

A Letter to Chronic Fatigue

Dear CFS, the Love of my life,

You’ve been with me through thick and thin, through good times and some incredibly bad times. I know you’ve been feeling that this was going to happen for a while, but I’m sorry to say that now that time has come. The time has come for me to thank you for all the blessings you have given me and for all the great, great lessons you’ve taught me. You will never know how grateful I am to you for all that you have given me.

You’ve made me scared, frightened, fearful and sick with worry.

You’ve made me feel hopeless, desperate and ashamed.

You’ve made me ache, made my writhe in pain, made me stay up all night, made me sleep until it’s impossible to sleep any more.

You’ve made me doubt myself, doubt my life, doubt my relationships.

You’ve made the possible impossible; the easy, mind-bendingly difficult; the ordinary, an extraordinary task.

But…

You’ve made me listen to the birds again.

You’ve made me watch and listen to the rustle of the tress once more.

You’ve made me realise that I’m pretty unique and goofy, and that’s ok.

You’ve made me appreciate the little things.

You’ve made me cry with gratitude at another day, another opportunity to live life.

You’ve made to give thanks for my amazing fiancé, supportive family and super friends.

You’ve made me realise that my life is here as a gift, and it’s mine to give in the most loving way I can to others, and to myself.

You’ve made me realise I am limitless. I am boundless. I am free.

That this world is worth the wait.

That people need my gifts.

That life is beautiful and glowingly sacred.

I am strong because of you. I am in love because of you. I am vulnerable because of you. I am myself because of you.

For that, my dear friend, I will always be truly grateful.

In love and abundant gratitude,

Katie xx

Are You Frightened of Change?

Aug 162015

Over the last few weeks and even as I sit here writing this today, change and the realisation that I might be frightened of change has been staring me right in the face. Even when I’m not looking for it, it keeps on popping up- in blogs posts, in articles on the internet, in my yoga practice, everywhere. Actually, I tell a lie, it hasn’t really been following me around- I’ve been open to accepting it into my life a lot more. This has highlighted where my limitations are- it’s incredibly uncomfortable, but I feel like I’m growing (such a beautiful feeling!) As much as we want to hold onto things around us and certain situations, the world around us and therefore our worlds are in constant, gentle flux.

When you’re ill with something like CFS for so long, there are moments when you’re going to want to play it safe (as in, pretty much most of the time). Who would want to go through relapse and the agony of starting at square one again, right? It’s embarrassing, uncomfortable and it feels like there’s now way out. You’re completely stuck and you’re pushed to the very limits of what you can handle and what you can’t…

…at least that’s what I thought for a while before I hopped on board the change wagon. Once you’re on, it becomes pretty impossible to get off.

This week, I’ve gone gluten-free and ramped up my yoga practice (I seem to have accidentally fallen in love with it, even though I wasn’t particularly mad on it before) Next week, more of the same, more reading, more catching up with friends after being a slight hermit (I blame Australian winters!) and less playing it small.

Would it really be so bad if you bought an audiobook that could change you life and committed to listening to it, instead of just buying it and putting it on the back-burner like you did last time? What’s the worst that could happen? You don’t like what they have to say and switch it off. Nobody got hurt, you saved face and at least you took the first step and tried.

Maybe you want to ditch the coffee and try a green smoothie? Honestly, it’s a completely no-brainer. You don’t have to like it, but you just might. They look disgusting, but they taste pretty flippin’ good, let me tell you.

No marathon running, no switching to a vegan diet overnight- just play it softly. Shift softly. The reality is, you can think about change until you’re blue in the face, but at the end of the day, you’ll still be where you are unless to make the change.

That’s all there is to it. Just try. Be courageous.

(These suggestions probably sound really patronising, but honestly, there was a time in my life when I was so scared of change and of doing something differently, of thinking about things a different way, that I became really, really stuck. Changing my diet or choosing to read different books were terrifying to me at the time. I would hate for the same thing to happen to you.)

Ask someone for help if you’re unsure. They’ll cheer you on as much as they can, with every fiber of their being, trust me. Ask me for help if you’re a bit lost and absolutely friggin’ petrified. I’ve got you. We’ve got you. You’ve got you.

I just want to leave you with this picture below, which really got me choked a few days ago.

If you want to change, you have to come unstuck.

change picture

Picture and design by the beautiful freshbysian.com

What change can you make today?

Love and evolving,

Katie xxx

How to Cope With Losing Who You Once Were

Aug 042015

As many of you have read in my recovery story, my life as the typical Type-A personality career girl I was destined to be turned out to be completely different from anything I could every imagine. … I just need to stop and pause for a while after writing this- the difference between who I am now and who I was then is just so staggering. Wow.

candle Image taken from here

Having spoken to some of you on a one-to-one basis and having experienced all this myself, many of you are probably wondering how to move on from the past and how to cope with losing who you once were. Your body and mind want to hang on to what they know is safe- they want you to stay small, keep you in a bubble and protect you from more pain, and to be honest, when you’re feeling so vulnerable, feeling protected and secure is often what you instinctively want to do. You know what happened in the past, and you managed to get through it, so it’s comforting just to think about it some more. I know why it’s so difficult- in all honesty, you don’t really want to let go. There’s a vain glimmer of hope somewhere at the back of your mind that if you just keep thinking about what life was like before that you’ll somehow be able to relive it. That the sights, smells, colours and natural physical vitality you once felt come flooding back to you almost as quickly as you became sick, and you’ll wake up from this horrible nightmare that’s swallowed you and your life.

Acknowledging the Changes

My first realisation that I have to grieve some parts of my life wasn’t when I went to hospital, or was clawing along the walls trying to make it to the bathroom as you might think- it was when I came home just before Christmas and I had to deal with my school friends. We’d all just gone our separate ways to start University and the inevitable ‘I haven’t seen you for 3 months- isn’t Uni amazing?!’ pub meet-up had been in the calendar for months. My friends got in touch with me, not knowing I’d been ill, to arrange this night out. Thinking I just had the flu, they kept ringing me over the next few days. The calls then became sporadic ‘what’s the point, you’re probably not coming anyway’ texts…and then they just stopped altogether. Forever…

I was hurt, I mean really hurt. It wouldn’t have killed them to come and see me- I mean, it wasn’t like I was going anywhere, right? This really upset me for a few days, but one day, after I had no more tears left, I just melted into acceptance. How could they even begin to know what was going on with me? How could I even entertain having them in my life when I’m so ill? It’s not their fault- they did try to involve me. This had to be someone’s way of letting me know that I just need to be alone for a while.

Losing my friends and ‘grieving this loss’ however was just the first thing I had to let go of and forgive myself and the circumstances for. I came to grieve the loss of my freshers year at Uni, the loss of my physical strength and enjoyment of exercising, the loss of my thoughts which were seemingly always being carried away by someone else (they can’t have been thoughts that belonged to me.) I had to mourn the loss of my dream career, the loss of my independence, the loss of choice, fun and spontaneity, and more importantly, the loss of life.

Changing Emotions

I went through a period of being beyond angry- I just could not accept that things were going to be this way. I had to ‘wake-up’ from this soon, surely? I was angry with my parents, when all they’d done was care for me and made sure I was ok. I was angry with my friends for having abandoned me and for living out their Uni years in the way that I should’ve been.

I was angry with this stupid, stupid illness, but most of all, I was cripplingly angry with myself.

How to Accept Changes

Forgiveness became a vital part of my acceptance process- I have done a lot of forgiveness work, and I mean, a lot. It doesn’t have to be hard or dark or emotionally fraught. For me in fact, I always felt incredible lightness and clarity after doing it. It’s not the type of thing that can just be done or said once (there’s a lot of emotion to wade through), but it gets easier. You don’t feel as though you’re carrying so much anger around in your body, you might notice that you get in an extra half an hour of sleep than you normally would or just feel ‘different’.

After this comes the acceptance part. Oooooh boy. This is not easy, especially when every instinct in your body tells you that all you have to do is get on with things and you’ll snap out of it any day now. You want to get more medication, do more exercise and get on with your 9-5 careers- anything to show your body who’s in charge and that you’re really not that sick, honestly. But the truth is, as you probably know already, that this is the fastest way to relapse I know and shows that you’re really not listening to your body.

grieving-quote-1

Image taken from here

So, how can you move through all this?

Go easy on yourself. Write one of these. Do this. And this. Have fun. Love being in bed- you certainly won’t be able to do this as much when you’re healed and running around like a lunatic. Make friends with your illness- understand it and be kind to it. Be completely indulgent and go gaga for self-love.

Please know that for every little thing you have to lose, get angry with, forgive, accept and move on from, that there is something else bigger, more beautiful and more dazzling waiting for us at the other end. It cannot be any other way. For every tear, there’s a smile just waiting. For every heartache, there’s something just around the corner that’ll make your heart burst with joy. For every missed opportunity, there’s another one with your name engraved onto it in huge gold letters. For every ying, there’s a yang- this is how our world is balanced and maintained.

Think about how flippin’ great it’s all going to be. It doesn’t have to be great right now, but trust that one day it will be, and more than you could ever possibly know. More than I could ever possibly put into words or convey to you. There’s just love and it’s all for you.

Turn your loss into your greatest teacher and your heartache into outrageous courage.

Love and patience,

Katie xx

Getting Honest With Yourself in CFS

Jul 152015

I’ve never considered myself to be a dishonest person. I’ve never told lies, and I don’t make a habit of it. When you look at the concept of honesty really closely, you’ll see that for most people, it means not being dishonest with other people. You don’t want to upset or disappoint someone else, you want to cover up for the fact that you don’t want to do something, you make over-elaborate excuses. Everyone does it and society, unfortunately, is full of it.

But have you ever stopped and thought about how honest you’re being with yourself? As ‘woo-woo’ as it sounds, this was one of the hardest things for me to deal with and it still challenges me every day. Having said that, getting honest with yourself in CFS is one of the most liberating stages on your journey.

Picture taken from here

I’ve always been incredibly independent, fiercely and stubbornly so, so having to move back in with my parents when I was 18 after my diagnosis was beyond all comprehension at the time. It was embarrassing, irritating and made me feel so small and defeated. My parents are two of the most wonderful people in the world, but taking this huge step was such a blow for me. Being reliant on them was even worse.

When I felt strong enough to go out, or even just go to the supermarket with my parents, I saw it as a huge achievement. I’d made it, there was no going back. I’d get stronger every day and then I’d be back to normal…until I woke up the morning realising that all my energy had been zapped in that one afternoon, leaving me with an empty tank once more. I know you know what I’m talking about- you want to use the slightest amount of energy when you’ve got it, not build up your reserves and take your time. Here is where I had to get really honest with myself. I had to pace it. I had to reserve my energy and work with it. I had to have faith.

This was a very long process. I’ve lost count of the number of times I said I was feeling fine to do something, when in fact I knew I was going to regret it the next day. My body begged me not to bother this time, but just to wait a day or two.

Here’s the thing. You have to honour yourself and be honest with yourself, especially in the early stages of recovery. You owe it to yourself and your life. If you know that saying ‘yes’ to the girly shopping trip (hours of walking and waiting around, chatting, trying on clothes) will leave you feel wiped out the next day, ask yourself if you should really do it. This doesn’t mean abandoning meeting people all together. Maybe you could meet for a lovely green juice in a cafe in the morning, and then let them get on with it. It’s heartbreaking, I know, but even more heartbreaking is the ultimate realisation that you are not looking after or honouring the most important being in your life. You.

There’ll never be another one. You. Are. Essential. You. Are. Divine.

I still struggle with this today, and have made many mistakes by letting my ego get the better of me. I’ve taken full-time jobs when I knew deep down that I wouldn’t be able to handle it and would barely be able to manage part-time. I’ve come home exhausted and barely able to speak, knowing that I should’ve listened to the warning signs and not gone to meet people after work. These actions were usually generated by what other people might/might not think of me if I did/didn’t do something. Dishonesty is a form of fear, and man, was I frightened. Just remember, the people that matter will only care about you and want what’s best for you.

You have to be honest with yourself so you can be honest with others.

I’m still working on this, and it’s hard and humiliating, but ultimately humbling. You need to prioritise yourself. I used to be terrible at this, but I’m getting a little better, day by day.

Love your vulnerability. Love being true to yourself. Let everything else fall away.

You.

Picture taken from here

Love and sincerity,

Katie x

5 Ways to Treat Brain Fog in Chronic Fatigue Syndrome

Jul 102015

The whole concept of Brain Fog really touches a nerve with me. I’ve never felt so weak and powerless as when I was having a ‘Brain Fog Day’. I felt as is everything I’d ever learned at school had somehow vanished and that all my brain cells had magically disappeared. I felt like a complete idiot- why am I getting my words mixed up? Why can’t I concentrate for 2 minutes? How do I treat Brain Fog? Even if your body is having a good day, you can often be left with this horrible, numb feeling in your head. For me, it felt like there was a big heavy grey cloud around my brain, that’s the only way I can describe it.

Photograph taken from here

What causes Brain Fog?

Although the exact causes are unknown, contributing factors include:

A lack of sleep or disruptions to your sleep cycle
If you’re experiencing pain, you might be mentally distracted by this for a prolonged period, which triggers a ‘numb’ feeling
Abnormal blood flow to the head
Depression
Interactions with medication

What are the Symptoms of Brain Fog?

For anyone who isn’t clear on what Brain Fog is, some of the symptoms include:

Becoming easily confused
Lack of ability to concentrate
Lack of ability to multi-task due to lack of concentration
Inability to recall words during a sentence (this was the main one for me!), forgetting why you started the sentence or mixing words around and not noticing
Short term memory problems
Inability to carry out simple calculations or mathematical problems
Losing things and not being able to find them, as you usually would
Becoming easily lost and disoriented in places you usually know well

Brain Fog generally tends to get worse when you are anxious, worried, rushed or dealing with too much information at once. It can also occur when you’re dealing with sensory overload, for example, too many bright lights or too much noise. I used to get completely overwhelmed in shopping centres and supermarkets, and would feel panicky and closed in. Once this had happened a few times, my parents knew to only offer to take me shopping to get me out of the house if they knew it was going to be quiet.

Help! I’m fed up of this! How can I Treat Brain Fog?

Luckily there are some things you can do to treat brain fog and go easy on yourself if you wake up and realise you’re having a ‘Brain Fog Day':

Recognise that today is a Brain Fog Day and sink into it. Don’t try and fight it, relax into it and let it go. Work within your limits, take regular time out and don’t get mad at yourself. Be patient and keep things simple. If you have to, tell people you’re having ‘one of those days’- they’ll appreciate and respect your honesty.
Drink as much fresh, filtered (if possible) water as you can. Sometimes, you might just be dehydrated. I constantly forgot to drink enough water when I was ill, it just seemed like too much effort. Water is incredibly important for our brain and bodies. You need to stay hydrated before you are thirsty- by the time you feel thirsty, it’s too late.
Avoid caffeine or energy drinks. It’s so tempting to just grab a coffee to alleviate Brain Fog and feeling tired, even just for a moment, but you’ll feel worse later on, and maybe even into the next day. Do it gradually, don’t go cold turkey all at once, but cutting out caffeine was one of the best things I’ve ever done for myself.
Get enough sleep. Sleeping for at least 8 hours is crucial. However, and I know this is so difficult to keep to if you’ve got CFS, don’t sleep too much or rely too much on sleeping tablets. You don’t want to do anything that’ll make you feel more Brain Fog the next day. Read this article for more bedtime tips.
Eat a nutritious diet, or if your appetite is a bit patchy, take a good multivitamin. Juices and smoothies can also really help when your appetite isn’t there, as well as these easy recipes. Your brain and body function on the nutrients you give it- let them thrive!

I hope these tips help you in some way. I know how terrible Brain Fog can feel and how much of a step back you think you’ve taken when you’re feeling like this. Know this this is your body’s way of healing and respect what it’s telling you. Once you accept this, you Brain Fog will lift as quickly as it arrived.

Love and lucidity,

Katie xxx

How to Accept Your Chronic Illness

Jun 232015

This is the big key (and mystery) of healing – how to accept your chronic illness and ourselves just as we are now- sick, ill and frankly, a little bit hopeless.

In the darkest times, when you’ve lost count of how many days you’ve been staring at the ceiling for, waiting for doctors or even family and friends to listen to you, or when you’re feeling beyond despair and anger, remember this.

The sun is always there. Clouds may cover it, rain might hamper its rays for a while, the moon might dance with it, but it is always there. It is always there for you.

Think of the moment you soar above the clouds on an aeroplane and are blinded by the sun, even though 10 minutes earlier you were caught in a blizzard. The sun and its light provide a constant source of energy and renewal for plants and animals, but very rarely do we see ourselves as being reinvigorated by this beautiful star.

Taken from here

Just as birds soar above the clouds, effortless in flight and freedom, illness can be our gateway to a new way of thinking, even a new life.

I will always be forever grateful for having CFS. It has made me stronger and wiser, more patient and forever thankful. It has also broken me and tested me. It made me angry and resentful. It was the thunderstorm to my sunshine. But I love how the experience has shaped my reality and my thoughts for the better.

They say that you attract what you think about. I spent years, even after I thought I had recovered, comparing my health to that of others, wishing my situation could’ve been difference. I spent an embarrassing amount of hours living in my head, accepting that I was just one of those ill people. Dwelling on the past, weeks off work while it seemed to be a breeze for everyone else, worrying when I was going to pick up the next bug- in a way, it became my way of life…and I was stuck.

The moment I stopped thinking about being an ‘ill person’ and more importantly, living in fear of possibly being ill, that’s when the real freedom and acceptance took place. Illness didn’t serve me anymore, neither did the ‘ill person’ label. Worrying about even possibility of being ill is a very real anxiety if you’ve had CFS or any other life-changing condition, but if anything, by worrying, you ensure that the next day you will wake up feeling physically worse. It has been proven that the brain cannot distinguish between what is real and what is imagined. Therefore, if you spend days thinking about illness, eventually, your body will accept that you are ill and ensure that the appropriate symptoms appear from nowhere. Square one seems like home.

For me, it was impossible to believe that and accept that this was part of my journey. But looking back, I know that by thinking about illness, I was attracting it. If I hadn’t been ill to begin with however, I would never had learnt this for myself.

Now I know that this was how it was meant to be all along. This is my journey, my gift from something or someone somewhere to ensure I lived my best possible life.

Just as I attracted illness with thought of illness, we can all attract health through thoughts of health and wellbeing.

Try to find the gift in your illness. Sit in silence and clear your mind. The answer will come to you in time, and you will feel blessed.

Love and tranquility,

Katie xxx

How to Cope with CFS Relapse

Jun 232015

“How to Cope with CFS Relapse” – this have to be the number 1 topic I’m asked about by my mentoring clients and via email.

Ooooh wow. Relapses, ey?! Don’t you just love ‘em. Just when you think you’re on the right track, you wake up one morning and you’re right back where you started…and you feel hurt, ashamed, disappointed and terrified.

‘One step forward, two steps back’ image taken from here

My Experience of Relapses

I’ve had a number of relapses during my time. Many of them were during times when I was actually managing to work full-time, but I definitely still wasn’t well. I ignored my body completely and ended up taking not just one day off with a cold, like most people, but at least a week. I knew if I woke up on a Monday morning, felt disgusting and phoned in sick, I knew without a doubt that I’d probably be off for a week. With hindsight, once I told myself this a few times, it was almost like I was setting myself up to take the week off, but I knew my body was weak and a relapse was what I needed for my body to tell me to slow down. I felt incredibly guilty about letting my colleagues and students down. I think this guilt most definitely prolonged my illness- I used to think so negatively and badly about myself.

Whether you’re working or not, you know what it feels like when it seems as though everyone in the world is fit and well and can hold down a 9-5, 5 days a week job without batting an eyelid. When I was at work, I pushed myself to be as good as, if not better than my colleagues, and never gave myself any slack or down time. I didn’t eat properly, didn’t exercise and self-care most definitely came last, so in a way, with all the stress and pressure I was putting on myself, it’s no wonder I relapsed.

Tips for CFS/M.E. Relapses

If you’re like me, relapses came to be unwelcome, but unfortunately very familiar friends. Here are some tips to carry you through these time when it feels like you’re back to square one again:

Know that this relapse is just a small set back on your road to healing and it does not mean that will never recover or are incapable of recovery. Brush it off and focus on the journey ahead.
Each relapse in the greater scheme of things is there to teach you something. Think back- how did you feel just before your relapse? (My throat and throat were incredibly painful just before mine, and I used to slur my words) Where you really looking after yourself? Did you find yourself getting stressed? How could you change this for next time?
If you can, write down how you’re feeling just before relapses and your symptoms in a journal. You can then refer back to it if it happens again, so you know what your triggers are. Try and find ways to reduce or stop these triggers altogether- then you’ll really be able to get a handle on what’s going on and be able to prevent or reduce possible relapses in the future.
As tempting as it is, do not wallow and give yourself a hard time. This is the worst thing you can do. Pretty soon, you’re swimming in negativity and wake up the next morning feeling worse (it took me ages to really realise that the more negative and ‘in my head’ I was, the worse my symptoms were, the more ‘brain-foggy’ I was and the longer my relapse lasted for – coincidence?!)
As soon as you’ve realised you’ve relapsed, do something lovely just for you- be incredibly kind to yourself, just as you would a family member or a friend. Negativity and anger at yourself is just wasted energy which can be much better spent on relaxing into recovery and for a better tomorrow.

If you’re going through a relapse just now, please know that you are not alone. We are here with you and we know what you’re going through. Think about the big picture and your journey as a whole- of course there will be set backs, but it makes the journey all the more interesting and enriching.

Love and the big picture,

Katie xxx

Picture taken from here

How to Cope with Loneliness in Chronic Illness

Jun 122015

As many of you I’m sure already know, loneliness and isolation form a very large and intimidating part of this illness. You’re spending so many hours a day in your own head, in bed, wondering when it’s all going to be over, and to be honest, a lot of the time, stringing a sentence together to speak to people is impossible. I remember my family thinking that I was being really rude for not speaking if they asked me a question, when actually it got to the point where I just couldn’t be bothered to start talking, because I knew I’d never be able to finish my sentence. The feeling of not being able to speak cohesively was so uncomfortable for me that I just didn’t talk in an effort to push this feeling away. It was demoralising- I felt pathetic. Ultimately, this side of me was completely removed from the person I was once- the bubbly, enthusiastic, talkative bundle of energy who always had time for everything and loved every minute of it.

So, realising when I was starting to get better that all my friends had lost touch and got on with their lives was harrowing. It was a real universal acknowledgment that I needed to stop wallowing and accept the now. It meant that I had to embrace loneliness in Chronic Illness and accept isolation for a little while, pretty much because I had no choice.

SONY DSC

Image taken from here

So, why don’t we like being alone?

We need connection as humans, but especially in this illness. We need to know that there’ll be someone there when we holler, someone at arms reach to catch us, to carry us to the bathroom. We need humans as our safety blankets. We need them to tell us that this is all a bit of nightmare and we’ll wake up soon (even though some of our nearest and dearest do this is rather strange ways!) Even if they don’t speak to us, or even if you don’t want them to speak to you, another person’s presence is angelic, warm and reassuring. A validation that other people still exist and lead normal lives while you’re stuck between four walls.

I remember loving weekends during my illness because everyone was at home- even just hearing sounds of people banging around in the kitchen was reassuring and comforting, knowing that I’d have someone to check in on me.

It’s the ultimate sign that someone else still believes in us, even if we don’t. That someone else still holds that flag for you, even if you’ve lost faith in your life. Having our loved ones interfere, nag and fret over us is an outward sign of care, concern and an overall need to make us better, whatever the costs. When we lose all hope in ourselves, we need others to show us the way and remind us of our brilliance.

But, be careful.

Be very careful in your need just to have ‘someone there’ that you don’t bring the wrong people into your circle, those who rob you of your energy, make you worry and stress even more and who ultimately have no faith in you. This can be hard when it’s your family or people you’ve known for a while, but you have to know that ultimately, their concern comes out of anger, frustration and misunderstandings towards your illness, just as yours does when you question yourself. If someone is really zapping your energy, talk to them about it, about how their words make you feel.

Getting comfortable with being on your own.

I’ve spent so much time on my own as a result of this illness that I’m, as sad as this might sound, my own best friend. What I mean by this is that, even though I now have a fantastic network of friends that I meet with very regularly, I’m very comfortable being on my own and I know myself and my own mind really, really well. I honestly believe that this ability to be on my own and enjoy my own company has carried me through and has kept me strong when I lost all hope during my healing. I listened to my inner voice and it carried me through. You lose the ability to do this when you are around other people, trying to please them, listen to them and fight back with wordless arguments. Fighting loneliness now, however deep and scary that bottomless well is, will mean you’ll be stronger for it later, more independent and more joyful in your future life. Ultimately, you’ll come out of the illness fighting, without a need to cling to others or stay small- being comfortable and confident in your own company will let you do that. If you still feel the need to desperately cling to others and to be around people constantly, know that loneliness, little by little, will make you stronger. It’s only in this space that you can grow into your true ‘you’.

I often think that that’s what this illness is here to show us- that there is strength is following our gut instincts, in listening to your inner guidance and in leading your own life.

Image by Lee Scott taken from Unsplash

So, how can you enjoy time on your own?

Try one of these now.
Meditate. Meditate like there’s no tomorrow without the fear that someone’ll walk in and brand you a big hippie.
If you can, write your thoughts down in a journal. Feel the power of just you, pen and paper and the universe.
Read and listen to audiobooks like there’s no tomorrow. Lose yourself in the company of someone else through words. You’ll learn so much about yourself, and for goodness sake, don’t feel guilty. You won’t have this time again and you’ll be glad you had this time for growth and understanding when you’re recovered and running around like a mad thing again.

You are allowed to feel lonely- don’t push it away. You are allowed to feel that nasty, metallic, hollow feeling and really get into it. There is no shame in this. You are allowed to enjoy the company of others and at times it’s essential, but if you have to be on your own, flick into that self-exploration mode and go there. It’s scary and you might no like what you find, but ultimately, that’s your way through.

Love and strength,

Katie xxx

Symptoms of CFS

Apr 182015

One of the hardest things I had to do during my recovery and illness was explain my symptoms to people and the reasons I couldn’t do everyday things. On the surface, if you see someone with CFS, unless they’re in hospital or in bed, they don’t really look ill. This was one of the hardest things for me to get my head around and it used to really, really frustrate me when people said, “Oh, but you look great! What’s the matter with you?!”. With hindsight, I’ve come to understand that people express concern in different ways and to love that about others. But for those times when you really haven’t got the energy to speak or string sentences together, here is what you can show or give others to help explain your symptoms and situation:

CFS is an overwhelming, confusing and isolating illness which is debilitating, frustrating and feels never-ending.

Symptoms of CFS

Some symptoms of CFS include (but are not limited to!):

Tiredness

The clue is in the name, but it’s definitely more than “I’ve had a long day at work- please leave me alone” tiredness. Imagine having the worst hangover you could ever fathom, combined with flu and malaria, every single day. This is just a pinch of what people with CFS live with on a daily basis.

Feeling wiped out after a simple task

Putting clothes into the washing machine or picking up the vacuum cleaner used to be my biggest triggers. When I get inside my head too much, I clean, so I always went to cleaning when I needed to ‘do something’ (ie. aside from staying in bed and feeling useless). Despite my best intentions, I would usually end up back in bed or on the sofa breathless about a minute later.

Not being able to sleep

Now, hold on a second. Surely, if you’ve got CFS, sleep should be no problem for you! What’s going on?! Chronic insomnia and horrendous sleeping patterns are also major symptoms of Chronic Fatigue Syndrome. At my worst, I slept for about 22 hours a day on and off, and often I would wake up at 11pm, read until 2am, sleep for 20 minutes, then be up again until 7am. Then, when everyone else was getting up to start their day, I’d be about to sleep properly. This kind of pattern takes months to crack and get back on schedule, but to a greater extent, you really can’t help it. Imagine this every day for months or years, and you can see how frustrating it could be.

Pain, headaches and muscle aches

All over your body. I remember even moving my fingers and toes at one stage was practically impossible and incredibly painful. It’s scary and it’s real.

Unable to cope with light or slight noises

I became hyper sensitive to noise especially. Even the slightest noise would send my nervous system into a panic that I found it difficult to calm down from. This might sound like an exaggeration, but it really isn’t. I could stand some light coming through my curtains, but found it easier to rest with the covers over my head. Light interference always used to cause unbearable headaches and migraines. Hence, busy shopping centres and supermarkets had to be avoided.

Beautiful head-in-hands sculpture-taken from here

Intermittent flu-like symptoms

Lowered immune system, fever, being unable to regulate your temperature, swollen glands, allergic reactions to things you used to be fine with, dizziness, the list goes on…

‘Brain-fog’ and other neurological symptoms

On a really bad day, I used to slur my words (so much so I apparently sounded drunk), forget really simple and usually memorable bits of information, forget vocabulary, experience balance problems, ringing in the ears, and so it continues.

Click here for more on brain fog.

Everyone is different, but for me, these were the worst symptoms. For a more extensive list, please visit ME CFS Australia’s website. Even now, if I haven’t been looking after myself properly, I very occasionally slur my words at night, but that rarely happens. As soon as it does, I know I have to slow things down and put myself first.

Please feel free to share your main symptoms in the comments below. It might feel sometimes like you’re alone, but you’re never alone. Please become part of our community through the Facebook page and we can help each other.

Love and rest,

Katie

Click here for more on diagnosing CFS and click here for some advice on dealing with doctors.

Managing Anger and CFS

Apr 132015

Image taken from here

This is a post I never really thought I’d write, but I’ve been called to write it after numerous emails from readers and questions from clients.

“How can I move on to loving and accepting my illness and myself when I’m so angry with my body and for the way things have turned out?”

I hear you. I hear you big time. Anger and CFS have played a huge part in my healing, but I had to admit that I was angry first and foremost (which is often the hardest part).

If there’s anything I’ve learned about myself during this whole process of recovering from CFS, it’s how to manage anger and accept it as a normal part of every life. In my family, as in many families, I was told that anger was a bad thing. You weren’t allowed to be angry and you definitely weren’t allowed to express your anger. This might be a part of the ‘British stiff upper lip’ character trait, but I know it doesn’t just apply to those from UK. Losing your temper or getting revved up in any kind of way is considered negative, ugly and ultimately is seen to reflect badly on you as a person.

anger Artwork taken from here

So, what do you do? You have 2 choices- 1) Let it out despite what people think or 2) Swallow it and don’t say anything.

Number 2 seems like a fairly easy option- it’s the least offensive and confrontational. But….it’s also the most toxic. Anger, like shame, lingers, creeps and builds up, causing a variety of illness and symptoms within the body if it is not released. For example, I was hospitalised with jaundice after I had Glandular Fever, which in energetic terms, is a clear sign of holding on to anger and feeling resentful.

Of course you’re angry that you got sick, of course there are days when you could scream out loud because you are so angry at the situation you’re in. My advice to you is:

LET IT OUT!

For the sake of your future health and wellbeing, do what you have to do to feel and express you anger. Recognise where in your body you feel the anger and let it pass.

* Hit a pillow

* Write your feelings down on paper, in a journal or a diary

* Stamp your feet

* Shout along to you favourite song

* Exercise if you can

* Tell someone (in a loving way without shouting) how you really feel, whether it’s about them, you or the situation you’re in- be honest

* Let yourself cry (and I mean really cry)

Expressing anger is a loving and non-offensive way for some people can take a lot of practise, but it is possible, and it is the best thing you can do for your emotional and physical health. Once you realise that anger is just another emotion and has the same weight as happiness, for example, you begin to accept and almost welcome it into your life. It’s an incredible opportunity for growth, self-realisation and most importantly, honesty.

What are you angry about and how can you express it lovingly?

Love and authenticity,

Katie xx

4 CFS Lessons from The Dalai Lama

Apr 082015

I was incredibly honoured recently to be able to attend a talk in Sydney with His Holiness, The Dalai Lama on his recent tour of Australia. I instinctively knew that there was something he had to say that would relate to CFS and that I could bring back to you. Scribbling notes in my little notebook in the dark while he was talking was such a thrill and I’d love to share with you all some of my insights into how his message relates so clearly to CFS/ME and to our individual and collective journeys.

The one thing I was left with above all else after the event was the incredible spirit, kindness and love radiating from this amazing man. He is incredibly witty, has an amazing sense of humour (click here for further proof!), but most of all he truly speaks from his heart, unafraid of what anyone might think or of other people’s agendas. His message is one of love for all, and he sees himself not as any kind of Guru or anointed messenger , but as a simple Buddhist monk. His humility and kindness of spirit were seen through the whole talk in the way he interacted with everyone around him. He truly is an incredibly special human being and I’m eternally grateful to have been able to hear him speak in person.

dalai laughing

Photograph of His Holiness, The Dalai Lama, taken from here

4 Lessons from The Dalai Lama

Lesson 1:

Everyone wants to be happy with no problems at all in their lives, but people create their own problems- they become a “slave of emotion”. Wow- this was definitely me throughout my illness, even towards the end when I knew it was all coming to an end. I kept obsessing about my health, and made my fearful thoughts into self-fulfilling prophecies. If you’re constantly thinking about CFS and all the ‘what ifs’ that play a huge part in it, then you end up being caught in a vicious circle that it’s incredibly hard to get out of. I know, I know- how the hell are you supposed to think about anything else when you’re feeling like this, right? You need to get out of your head and into your heart. Meditation is also amazing (trust me, I know people talk about meditation all the time, but it really is unbeatable).

Move away from the fear that you’re going to get worse if you go for a walk outside when you feel like it. Get someone to go with you- what’s the worst that can happen? You’ll come back to bed and give yourself a huge pat on the back, or you’ll get outside, discover that it’s too much and come back inside. Most of all, if you take these steps, you’re ever closer to cracking that fear barrier- what’s stopping you?

Lesson 2:

Relating to lesson 1, check in with your emotions frequently- are you actually causing negative emotions by beating yourself up about your illness? Are you being too hard on yourself? CFS is an illness where I’ve found to my detriment that the more you fight it and deny what is, the worse it gets. Acceptance is key. Mindfulness is key.

Lesson 3:

“Your happiness is my happiness. Your suffering is my suffering”- I wish I’d heard this when I was very ill and to a certain extent, took my anger out on my family and friends. All they wanted was for me to be happy, healthy and well. At the time, I interpreted it as them not accepting my illness and accusing me of being lazy. Cut your loved ones some slack, cut yourself some slack. As The Dalai Lama says, “Do not let anger develop- this is the real meaning of forgiveness“.

*(This is also the main reason I set up this website, so you can connect with others in a similar position to you and know that we share our dark times. You are not alone.)*

Lesson 4:

“Fear eats away at the immune system”- wow. This is something we all need to hear right now. When your body is in a perpetual state of fear, there is no room for love and your health suffers. Most of the time, you are not doing this consciously- your illness was not deliberately and consciously brought on by you. But perhaps the fear that led you into CFS caused your immune system to suffer and not let your body do its job properly. It’s far from easy, but learning to lean in to love and away from fear, is a life practice, but one that will reward you greatly.

dalai

Photograph taken from here

Let me know what you thought about these lessons- did any of them ring true for you? Comment below!

Leaning into love, Katie xxx

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