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Learning to Rest – we’ll talk about Pacing next time

pen calendar to do checklist

What is Pacing? Rest?

Unfortunately with ME there isn’t one magic pill or treatment to help us get better – less ethical individuals may claim there is.  Such is the nature of an illness where individuals with similar symptoms yet unknown causes are grouped together with the term “Chronic Fatigue Syndrome, Post-Viral Fatigue and ME.”  And such is the nature of hearing the words “Chronic Fatigue Symptom” to suppose it’s about being tired all the time – a syndrome not an illness or disease.  That’s why you’ll hear the term “ME/CFS” a lot – as CFS alone doesn’t seem to give the illness authenticity.  Plus if you have the associated brain fog and cognitive effects of ME/CFS – try remembering and pronouncing the words “Myalgic Encephalomyelitis” in a sentence.  

It’s frustrating – along with finding it now hard to do VLOOKUPs and simple Excel formulae  – seriously “SUM”, “Open Bracket”, “Oh no – what was that cell reference again?!”, “SUM – ummm – I give up!”  Why doesn’t my brain work anymore!!!  Let’s not even consider IF statements and nesting.  Thankfully though my PowerPoint skills seem to be reasonably retained.

So – what has helped for me in managing my ME and trying to get better.  

Simply:

  1. Rest
  2. More Rest
  3. Lymphatic Massage
  4. Counselling / CBT – individual sessions to help me start to accept and acknowledge my ME and self compassion, and group sessions with fellow ME people where we’ve all gone through a learning journey
  5. Pacing

What hasn’t helped:

  1.  Graded Exercise Therapy

What might have helped:

  1. Antidepressants
  2. CoEnzyme Q10
  3. Vitamin and Mineral Supplements

So what is Rest?

This is the scarey thing with ME/CFS.  Rest means rest.  That means no reading a book, no watching TV (yep even a guilty pleasure like Love Island or watching Wimbledon doesn’t count as rest), no background music, no planning the weekly shop in your head whilst sitting.  It means no spending of physical, cognitive or emotional energy – just nothing.

It’s hard.  It doesn’t really fit in with family home life or working or commuting.  For me – doing nothing was a huge challenge.  It still is – as I feel like I’m wasting my time.  Having been juggling home and work life and spending my spare time creating lists and plans for what seemed like important things at the time – this was hard.  This didn’t fit in with my core beliefs about my value as a person.  Pre-ME/CFS – I knew about Self Care and Me Time – because that’s what people talked about but did I really believe in it and execute upon it?  Not really – and if I did – I’d try to plan and make things easier for those looking after the kids – and in effect place more burden on myself. 

I still struggle with the difference between Self Compassion and Selfishness.  

Now this blog post was actually going to be about Pacing – I was going to talk about Rest and how I used Pacing to help me get over the idea of “Doing Nothing” and and how I tracked it so I could measure it and so change my approach to Rest.

If you can’t measure it, you can’t manage it – isn’t it lovely how management speak and ways of working in the Corporate world creep into how you approach life! Well that’s how we approached projects in Consultancy back in the day …

However – I can feel my symptoms flaring up – sore throat, painful lymph nodes, my temperature is all over the place (mainly feeling cold).   And so I’m going to take some of the medicine which I’ve learned through CBT – Self Compassion. I’m off to rest.  

However if you aren’t needing some rest and can do some low level activity and watch TV – then I’d recommend Brene Brown’s TED Talk on the power of vulnerability. 

I’ll share my geeky spreadsheets and pacing diary another time!

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Living in a Box … Living in a Cardboard Box …

I’ve been ticking one box my whole life and it’s hard to consider that, with the way ME affects my life, I might be ticking another one – sadly the fact is that I’m not as able as I used to be.
But today I’m going to talk about the first box as I’m not there yet with ticking the other box.
So here’s the box I’m going to talk about – let’s go gently as it’s a delicate and emotional subject! But we need to talk.

The ethnic group question from the 2011 Census. Source: 2011 Census England Household questionnaire, Office for National Statistics (ONS)
The ethnic group question from the 2011 Census.
Source: 2011 Census England Household Questionnaire, Office for National Statistics (ONS)


It’s just over a month since the death of George Floyd and an outpour of racial awareness and unfairness erupted. Black squares clogged up my social media and I was appreciative of those who were aware of their privilege who posted but also aware that some of us who fit the ethnicity boxes – didn’t. I didn’t post a black square.


It bugged me – why didn’t I? After much thinking I realised that it’s because as ‘Yellow’ I’ve spent most of my time trying to fit in and not raising the race issue – I know it’s hindered my life but also as ‘Yellow’ I think I’m perceived as less different and less of an unknown – which helps. The British Chinese minority represent 0.7% of the UK population and are known as the Silent Minority. Chinese children tend to do well at school – but interestingly their educational achievement does not translate into better rates of employment. We tend to stay quiet as maybe ‘Yellow’ is a less threatening colour and culturally younger females don’t speak out. However I realise my privilege of being seen as ‘Yellow’ and am thankful for it (even if I still feel discrimination).


At primary school I remembered the slanted eye gestures and the “Chinky” chants that came of being one of the few ethnic minority children. I was lucky that although English was my parents’ second language – they worked in the NHS and used English on a daily basis. This meant that they could engage with the school and ask the teaching staff questions when needed. So thank you mum and dad – thank you for being able and willing to engage with the school to understand the UK education system – I know it took perseverance and tenacity. I know English was your second language and having not been educated in the UK – you didn’t know what a State Grammar School was – but you listened when your daughter said she’d heard of one and wanted to go to one. You found out what they were and supported me even though we came from an ‘English as an Additional Language’ (EAL) household. There was no chance of a tutor but we worked together on it. Thank you as you helped me broaden my opportunities and increase my privilege in this world.


Starting my career – I realised being a Chinese-looking female – you look young and can lack gravitas. I was lucky to receive some training when I was told bluntly that my voice hindered me. The enthusiastic and higher timbre of my voice re-enforced that I was young and not experienced – I learned quickly when presenting or participating in meetings I needed to speak lower with more bass in my voice. Plus I had to repeat points and fight to get recognition of them – it’s a lot easier to recognise a point when it’s raised by someone who you feel familiar to (because of their looks) even though you don’t know them or their experience. Young, female, non-white – I did okay but was conscious of it.


I’ve been told multiple times to ‘Go Back to Where you Come From!’. I’ve been asked in front of others ‘Are you being Racist?!’. Both times ironically by older white males – and no neither times was I being racist. I was talking about race and colour but I wasn’t being racist – I wasn’t disciminating against someone because they had a different colour – I was talking about it – I was conscious. It hurt and put me back in my box and sometimes it’s just easier to stay in the box and be a known quantity.


I think it’s human nature to fear what’s unknown and to like what’s familiar – I believe we’re ALL guilty of some sort of unconscious bias. For those who say I don’t see colour – you do. For those who say they’re not racist – I don’t believe you. Saying either of those phrases raises my alarm bells – I need to tread gently in discussions with this individual. It’s much better to say what you are rather than what you aren’t. When curious about someone’s background – you may be scared of offending the other person but if you approach it openly and with an interest to find out more – I doubt you’ll offend them. But maybe don’t ask ‘Where are you from?” – that’s too loaded because we’ve been told so many times to go back to where we came from even if we were born here. What’s your cultural heritage? Do you mind telling me more about yourself, your background or family heritage?


I’m aware of my privilege and culture. Are you? I’m sharing my experiences so maybe you can start to understand. From experience – females will more easily understand as we’ve been together on a similar journey and those who are less able or have been affected by chronic illness will more easily understand too. Sorry for the generalisations – perhaps you’re a white male and you’re angry at me for generalising. But I’m aware that I’m generalising – I’m conscious that I’m generalising. Are you conscious? Or are you still unconscious without realising it? Try this test – I have.


However enough about me – currently there is one house that is really burning and I need to speak up even thought it’s hard.

So I’m trying – I’m trying to speak out.

I get you Reni Eddo-Lodge as to why you wrote “Why I’m No Longer Talking to White People About Race”. I get how you felt you can “no longer engage with the gulf of an emotional disconnect that white people display when a person of colour articulates their experience” – it is SO emotionally draining trying to get your point across.

Because they have privilege and have never experienced not having it.

#BlackLivesMatter


Thank You to the White Male Ally who spoke up publicly and inspired me to speak out more.

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I’ve spent the last 3 years training for this lockdown marathon!

I keep wondering to myself – why now, why start writing about my experience with ME and sharing it more publicly? Why attempt to fundraise and homeschool at the same time? (although let’s face it not a lot of home schooling is happening right now over here).
Well apart from the fact that I’m now able to – from a physical, emotional and cognitive level – I’ve realised I’ve actually been in training for Lockdown over the last 3-4 years. Yes – little did I realise that my last 3 years have been a dry run for Lockdown and equipping me with the resilience and coping mechanisms for what is happening right now in your world. (I know – you’re jealous aren’t you? I got a headstart on you! Whether that’s fair or not – you can decide …).
Imagine life as you know it changing overnight, no longer being able to socialise with friends and family how you’d like to, learning more about an illness you’ve never heard of before, being worried by what you read about the illness and wondering how it will affect you and those closest to you.


Now consider adding in loneliness into the mix. During this lockdown a lot of us with children have been pushed to the limits with having a full house all day and trying to juggle work or other commitments. But let’s be grateful you’re in lockdown with people you can chat to, hang with and interact with. Imagine lockdown with those who have no one to talk to, no one to share their worries or fears to, ashamed to talk about their situation or perhaps are just surviving and don’t have the energy to communicate with others (whether by talking or by text). It’s lonely. And perhaps factor in the shame and guilt of being lonely. Maybe that’s why I haven’t been in contact over the last few years with you? I’m sorry – I wasn’t in the right place to.


So – not only has your world been turned upside down – you’re lonely and you miss your old life, your old self.


My old self – who was she? I hadn’t realised how much pride and self worth I derived from being a ‘working mum juggling everything’. Yes it was a struggle at times and perhaps I had unrealistic expectations. I loved (correction – I still do love) karaoke, I loved going out for drinks and getting a bit mischievous, I loved creating change and implementing change in the workplace, I loved doing things and adding value where I thought I could, I loved thinking about things strategically and then translating that into practical things – I’m definitely an engineer not a scientist!


Suddenly – I couldn’t do. I couldn’t even think. I didn’t know what was happening to me – I didn’t have the ability to do what I prided myself on. I coudn’t work things out and how to improve things – I couldn’t think. All I could do was lie there in bed – no thoughts, no thinking, no worrying – just blankness. My husband might ask me what I’d done all day – I had no answer – the answer was nothing. My inner voice would start on me – you’re being lazy, why can’t you just get up, why can’t you just start thinking, what’s happening to your brain, you’re a waste of space, you’re useless – Get Up! Get Doing! But my rational, university-educated brain and my physical body – wasn’t able to respond. There was nothing there – I wasn’t able to consider that I was actually ill, that something was wrong with me. And apart from the blankness – there was shame and guilt.


Looking back – it wasn’t a great place to be. I wasn’t able to realise I was in a hole, I was ill, I was depressed. I had no thoughts, no plans and no opinions (which if you knew me previously to getting ill – it would surprise you).


So yes – I’ve spent the last 3 years in training for this lockdown marathon. I’ve been in a mini lockdown of my own for the last few years. And it’s taken that long for me to even start to accept and adapt and be brave enough to share. So please be gentle with me and don’t suggest I’m wasting your time.


Ironically – I’m not sure I want lockdown to end. I get more time with my family, I get to socialise via Zoom with friends I couldn’t meet up physically with, I can attend meetings virtually rather than spending precious physical energy getting somewhere. People seem more tolerant and compassionate without me needing to explain my illness. Where previously, suggesting a virtual meeting was frowned upon as it was something different – this lockdown has forced people to adopt technology that existed previously. Its changed company and organisation cultures overnight and also people’s views of productivity levels when working from home. And let’s admit it – changing the culture of an organisation is challenging and not always successful in implementation. Changing the view on working parents working from home has been a long uphill battle – will this change triggered by a pandemic stick longer term?


I don’t know but let’s hope we’re currently in training for a more diverse and compassionate society and workforce. And that we change our behaviours long term after this period of training.


Let’s not forget those who might be in their own mini lockdown right now or in the future – they’re in training and will need your support. Because you’ve been there now and experienced it and have learned from it. Right?

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Why buy these Face Coverings?

Firstly because they’re in aid of research into ME which is a really poorly misunderstood disease – I mean I sort of believed it was an illness of sorts but get some rest, de-stress a bit and you’ll be get better right?! Ummm … no. Three years later and at least I’m no longer housebound but it’s slow progress (especially for someone who was never that particularly patient!).


Secondly – these are more sustainable than single use face coverings/face masks. They’re washable, re-usable and supporting a good cause and potentially helping us move into a ‘new normal’ as we move out of lockdown.


“If every person in the UK used one single-use face mask each day for a year, it would create 66,000 tonnes of contaminated plastic waste, the report warns, and ten times more climate change impact than using reusable masks”

UCL, Plastic Waste Innovation Hub

And thirdly – well if you’ve read this far then you’ll now have some awareness of what ME/CFS is and that’s cool!

Buy here!

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You’ll need one to Uber …

Face coverings – are they going to become the new norm? You’ll now need one to get an Uber or an Addison Lee – phone, keys, face covering – check!


Well in SE Asia – they’ve adapted and are wearing them whenever they go out. Pre- Corona landing here – I remember Feb half term when we had relatives texting from Hong Kong asking for supplies. And then when it hit here – they texted asking us if we needed supplies.
It does feel weird wearing one as we’re not used to it. But what’s the harm? If you’re asymptomatic you’re not spreading the germs further and it does provide some sort of protection for you. More importantly, I feel it helps you remember to do things differently – changing your behaviour. If you wear one when you’re out – you’re more likely to remember to physically distance and try not to touch your mouth and nose as much.


Will there be fashions? Christmas versions? Back to school versions? Designer ones?


But let’s be sustainable and use re-usable ones where possible. Let’s save the hard core face masks for those on the front line.
Even better – let’s be sustainable with washable and reuable face coverings and support fundraising at the same time.
Order here and I’ll see what I can do!