What do you do all day? (Therapies I have tried)

What did you get up to this week? What do you actually do all day?

I don’t mind being asked these common questions, in fact I quite like it, but it’s how to answer that I find tricky. 

Most weeks I will have a Focus Event, such as going to another part of town for an appointment or to meet a friend, and all other minor activities and resting are planned around that.  So the Focus Event is my answer to the questions ‘I’m going to …. but I’m not doing much else.’ 

The problem is, this isn’t true! I’m doing loads of other things.  Of course there’s a lot of resting but I also spend a huge amount of time actively working on my recovery.  The recovery processes and therapies don’t feature in my answers because I worry that it is mind-numbingly dull, and I definitely don’t want to be someone who only talks about their health.  Equally though, I want people (or possibly I want me) to know that I am giving 100% to my recovery, and I am not sitting around all day waiting to ‘be better.’ And so, I have compiled a list of what I do spend my days doing, the therapies and processes I have tried.   I hope it will help to answer the questions, and also give you some ideas to explore. 

Help for Horizontal Days

Whether you do it for 23 hours a day, just half an hour, or most likely somewhere in between, one thing is for sure: if you have Chronic Fatigue, you rest.  

I’ve consulted over 30 practitioners over the last two and a half years, and it’s the only thing they all agree on: if you have Chronic Fatigue, you need to rest. 

Tuesday Tune

Move over Nelly, I have a new favourite song about a baby elephant…

Small Changes for Smoother Sailing

I’m not entirely sure whether it’s due to muscle weakness, shakiness or sheer brain-fog-induced-clumsiness, but one thing is for sure: I am always dropping things! Usually it’s a breakable item, and most often a glass. Not a huge problem in itself, but it contributes to the fear factor nonetheless and so in keeping with my ‘lets make life easier for myself’ motto I’m currently trying to embrace, I purchased 3 unbreakable tumblers. And not just any tumblers, pretty Orla Kiely designed ones!

It’s a new step for me, making a little change or purchase that makes my days easier, but I highly recommend it… and here are some more ideas…

Tuesday Tune: A Wonderful World

First released as a single by Louis Armstrong in 1967, What a Wonderful World has had many reincarnations and it is one of my go-to 'Everything is ok' songs.  This version is my new favourite… and it's not even sung!

Things We Love

At first I was too sick to think about reading.  My day consisted of bed, doctors appointments, brief visits from family and googling symptoms.  Later, when I first tried to read, I looked at a page of the newspaper and saw the words.  Something strange was happening though, they were staying on the page and they weren't going into my head.

Had I forgotten how to read?

Tuesday Tunes: Get Happy and Lucky

Here are some cheerful tunes for your Tuesday.  They're both popular (Happy has had 222 million views on YouTube alone) and with good reason… they make you smile!

Explaining Chronic Fatigue Syndrome

It can be tiring explaining Chronic Fatigue Syndrome.  So today’s MEminibreak is a break from exactly that.  It’s a fantastic Fact Sheet specifically for the friends and family of people with ME/CFS, by ME/CFS Australia (www.mecfs.org.au).

Tuesday Tunes by Tim

Tim Minchin has provided me with many MEminibreaks over the last few years.  He is clever, funny, rude and completely unique.  I love the way his music is full of heart as well as laughs.

Tuesday Tunes

I am a big music fan.  Music has played a huge role in all stages of my life and my time with Chronic Fatigue has been no exception.  I find that as well as doing its usual jobs of comforting, uplifting, entertaining and energising, music helps fill in the quiet of my Chronic Fatigue days.  I don't listen when I'm resting, or if I'm having a particularly audio-sensitive day, and I definitely can't do anything while the music is playing, but I find it really useful when:

Welcome!

MEminibreaks is a place to come:

• for ideas to brighten your day
• to be part of a community
• to learn about what living with Chronic Fatigue can be like

An MEminibreak could be a song, a book recommendation or suggestion for a simple daily ritual.  While these are far from a cure, I find things like this can really give my fairly serious, monotonous and foggy days a little lift and leave me feeling inspired, if only for a few minutes.  I truly hope they will do the same for you.  By discussing them here, we can build a community of people who have some idea of what we experience, whether through having Chronic Fatigue themselves or because they are a friend or family member of someone affected.

Chronic Fatigue can be hard to understand, not least because experiences of it can differ hugely.  Plus there are a LOT of misconceptions out there.  Through some of my posts I'll share my ongoing experience of living with Chronic Fatigue, and hopefully shed some light on this debilitating condition.

Have a look around and let me know what you think!