Catch ya later!

I have opened myself up to the internet and met some lovely people along my recovery journey, but there is nothing new I can tell you now about my experience with Chronic Fatigue Syndrome. I won't remove this blog for the foreseeable future, as I would hope people would stumble across my posts in the future and that it may help them in some way.

I don't really want to stop blogging entirely. I like it as a hobby, I like making posts and adding pictures and things, even if I'm the only one who's reading it, but I feel to link the new chapter of my life to an old one, would be doing both the old and new content a disservice.

But this blog has served it's time I think. If I am going to blog again, I think it will be under a new address which is unconnected to the word or phrase "spoons" or "recovery".

I am still a "spoonie". I have adjusted my lifestyle in such a way that I can keep a steady flow of energy with me throughout each day. Through what is now years of practice, I have learned to pace in order to do this. My life feels "normal" again.

If I have no relevant content to share on a blog about "recovery", then surely that means I am recovered??? Who knows. But what I do know is this; and cheesy as it may sound: "You can't start the next chapter of your life if you keep re-reading the last one".

Catch ya later :)

A Quick Update of my Progress: on ME Awareness Day

Most of you who read this will know I am working pretty much full time now (well, over a 30 hour week anyway). In July 2014 it will be a full three years since I was diagnosed.

I felt like I should blog on today of all days, but I'm not going to be political, or waffle on; this is just a short bullet point list of a few things that I do to maintain my health currently:

• Drink 8-10 250ml glasses of water/juice per day
• Drink a smoothie/green smoothie most mornings
• Eat simple, simply prepared food including lean meats and fish
• Get a regular bedtime and have a bedtime routine
• Exercise in the gym once a week
• Walk in the fresh air if only for 10 minutes
• PACE and switch my daily activities
• Meditate
• Do some gentle yoga/stretches
• Journal/document my thoughts through words and art
• Listen to my body and learn to know when it needs to rest

I know this might look like a REALLY basic list, but start with the simple things first and the rest will follow. The three basic, key elements that I always return to if I have a flare up or setback are:

• GOOD NUTRITION
• PACING
• REGULAR SLEEP PATTERN

Speaking from first hand, personal experience, I strongly believe I would NOT have recovered had I not learned, through much trial and error I might add, to get just these three things right; the rest came later. And different approaches work for different people, depending on the severity and variety of symptoms.

As I always say, this blog is NOT medical advice. It's simply a record of things that have worked for me in my own personal recovery journey.

I do hope, though, that it can offer comfort and inspiration to others that are dealing with the many and varied symptoms of ME/CFS.

Happy Monday all, look after yourselves.

J x

My Evening/Bedtime Routine, Spoonie Style!

Source

Regular bedtimes, one of the main enemies of a spoonie. I am no stranger to painsomnia. Getting to sleep some nights is akin to defeating a particularly tricky boss in some sort of strange other-worldly video game. Anyway enough with the weird analogies. Here I will discuss how I try and set myself up for a relaxing bedtime and a (somewhat) refreshing night's sleep. I use the "habit-stack" technique as discussed in my previous post about my morning routine.

For me the amount of sleep I need per night can vary anywhere between 6 and 8 hours, so I aim to leave an approximate seven hour "window" for sleep. I work, so I have to be up at certain times on certain days, so I always work it backwards from there. So for example if I need to be up at 5.30am my bedtime must be around 9.30pm. I leave about 1 to 1 1/2 hours for my bedtime routine, which takes us back to about 8pm in the evening.

The first thing I do is switch off all my electronics, which is usually the laptop and the radio. I set my mobile to silent/vibrate mode. Then all the bright lights in the house go off and I navigate the house via side lights and bedside lamps. This gets my brain ready for dark and night time, and we all know blue light before bed is bad for even the healthiest of us!

I then potter about for 5-10 minutes tidying up and putting things away. I like to have neat and tidy surroundings to start my day in.

I might also have a small snack at this point, nothing worse than going to bed hungry! I have a fast metabolism and tend to eat up to 8 times during the day, sometimes for no other reason than to regulate my blood sugar.

Then I either get in the shower or run a bath, after having cleaned my teeth. I've done this routine so often now that when I start brushing, it seems to set off a "sleep mode" in my body, and I can feel myself start to relax. I also have a playlist on my phone of quiet, relaxing songs which help me unwind.

Then I meditate. I've been practising this for a few months now, and I can sit for around 15 minutes. I wouldn't say I'm brilliant at meditation, but I like the feeling of sitting still in the warm light from the bedside lamp and listening to how quiet it is outside, and letting the day come gently to an end.

Time for bed, and either the radio (usually 4Extra), a good book, or some guided meditation, either a body scan or some progressive muscle relaxation.

It's getting towards summer right now and the nights are shorter and lighter, so I use a sleep mask to trick my brain into thinking it's dark, and to keep me from waking at 3am when the sun decides it's had enough time with the Southern Hemisphere...

I hope this helps you in making your own relaxing, restorative bedtime routine. Please let me know in the comments if you have found this useful, or tweet me @JayHell83 and we'll have a #spoonie chat!

Look after yourselves, fellow spoonies!

J x

My Morning (Spoonie) Routine

This is nothing to do with beauty regimes.

This is all about conserving spoons and energy.

I drew inspiration from Courtney Carver's Be More With Less mini-mission on Habit-Stacking.

I find that a regular routine trains my body to know what's expected of it, and this is a routine I've been working with for around a couple of weeks now, and it helps to set me up for the day.

Times are variable depending on what I'm doing that day, but I'm going to tell you about a typical work-day morning here. The whole routine takes around 90 minutes for me to complete:

Alarm: 5.30 am: Two days a week I have to be at work for 7am, so I need to give myself ample time to fit my habit stack in, and 90 minutes seems to be about right.

Yoga: This really helps my joints loosen up in the morning, which is beneficial for my physical job of lifting, shifting and stacking shelves. I then do some gentle neck stretching exercises. This whole sequence takes around ten minutes.

Meditation: Since I have started meditating I've found it to be really beneficial. I started with a 5 minute session, and have gradually worked it up over the past couple of weeks to a ten minute session. The longer sessions happen in the evening, but in the mornings I have time to fit in 5 minutes of quiet contemplation. I sit on two pillows with my back propped against the end of my bed as it would take far too much energy for me to sit up straight unaided this early in the morning!

Food, water, and supplements: Time for breakfast! Usually some toast with jam or spoonie energy bars (recipe coming soon, all being well!) along with yogurt and fruit sweetener (honey alternative). I also make sure to drink around 500mls of water as it kick starts my hydration for the day, which is essential for keeping my fibromyalgia symptoms in check. I also take my daily dose of three supplements.

Teeth: I went through a period in my life as well where I had neither the energy or inclination to even lift a toothbrush to my mouth, but now I brush, floss and mouthwash every day, and I make time for it twice daily.

Wash hair & get dressed: Unfortunately my hair is something that will not behave unless it is washed daily! Whilst my straighteners are heating up I get dressed for work and "put my face on" to make myself presentable for the lovely customers that day ;)

Then it's off to work I go!

A daily routine, as well as pacing, is a huge part of my life now, as it's enabling me to maintain an consistent level of energy without getting into a boom and bust cycle.

What sorts of things do you do to get yourself ready for the day? Do you have any spoon-conserving tips you'd like to share? Tell me in the comments or tweet me @JayHell83, I love to hear positive, inspiring stories from the spoonie community.

Look out in the near future for a post about my evening/bedtime routine!

J x

I've been interviewed!

www.mecuperate.co.uk

The lovely Jenny at MECuperate.co.uk interviewed me recently! This is an extract from the "About" page on her website: 

"I feel inspired by those who fight the odds of chronic illness to cultivate and use their talents as a distraction, a way of coping and/or as ways of employment.

Without known cures we find alternative ways to treat or ease our illnesses and I also wanted a place we could share experiences of what helps us to help us make the most of life that we can."

We talked about my M.E story, blogging, and the part that being creative plays in my recovery journey. Read the full interview including pictures here!

Thanks again, Jenny!

J :) x

Art Journaling!

No matter how much of a creative rut I get myself stuck in sometimes, the one ever-present medium/way of working/whatever you want to call it I come back to is always art journaling and altered art. I've been getting inspired by the many time lapse videos on YouTube of others' creative work recently, and thought it was high time I started a new creative project.

This is a "PaperBlanks" journal which I bought on holiday in Scotland, some years ago now. It was full of waffle about my pre-spoonie life (not good) and I didn't want to throw it away or rip the pages out, yet I needed to "erase the past" somehow. So in stepped trusty old PVA glue, paint and a hoard of scrap paper and bits of old envelope that I knew I was keeping for something-now they have a use!

My lovely thick, textured, layered book ready to go!!!

I've pasted over the random scribblings (reading back made me cringe!) and now I have some brilliant art journaling backgrounds to inspire me. It's really hard to create on a blank piece of white paper, so this is a really good idea if you're new to journaling, this took me a morning of basically sticking down and painting over, I wasn't really thinking about careful compostition or placing things neatly, and the overlapping and sticky-out-ness (it's a word now, okay) of the glued pages just adds to the whole general scrapbooky-journal-y feel of the thing! Okay I'm starting to ramble now, but art journal lovers will understand-hopefully!

Now to fill the pages with loveliness-I can't wait to start my altered art journal journey!

Follow the Flickr feed of this project here: [JayHell] Art Journaling

 Who else loves art journaling and altered/mixed media art? Tell me in the comments below or on Twitter @JayHell83

J :) x

Spoonie Infographic

See it on my Pinterest page here

For a long time I've been thinking about a way to explain why the term "Spoonie" is used without having to carry round a bushel of actual spoons (click here to see this joke in context). I'm happy with this and hope it is useful for people to use and share, although if you do I'd very much appreciate a link back to this post or the Pinterest pin, thanks guys :)

Please let me know what you think in the comments, or Tweet me at @JayHellJournals :)

J x

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January 2014 Update: Being Calm and Staying Hydrated

My favourite quote from my favourite film, made into some art this month | see it uncensored here

I started the month with a cold, and ended it with one, (sniffling as I type here!) prompting me to really think hard about my diet and eating regime. I've tried so many different things and never stuck with them, so February is going to be all about mindful eating. There's a great post on that here. Also I want to try and cut down the amount of processed foods I consume to the absolute minimum. I'm not going to start clearing out cupboards though, as that is not only too drastic but also extremely wasteful.
As well as eating, I have been consciously drinking more, with help from the Hydrate app (this links to the Android app but I'm sure there'll be something similar available for iPhones). It's great as you can set a reminder which will sound, reminding you that you need to drink, you can also set different water intake quantities, for example millilitres or ounces. I'm pretty sure that my increased water intake has helped decrease my cold symptoms, and I've drunk a minimum of 2 litres every day for the past 12 days now, apart from Thursday when I was particularly ill, but I still managed to drink 1.5 litres that day!
I've also discovered a brilliant website called calm.com, where you can do short meditation and guided meditation sessions, from 2 to 20 minutes. There's different calming scenes including beaches and calm lakes, and a variety of soothing instrumental music. There's also an iPhone app available and an Android app is apparently on the way. I'm intending to be more productive with my internet time in February, and this is definitely something I'm going to work in to my day, I think it will be especially useful during the "power down" hour that I'm hoping to implement regularly before bed (more about that in a future post)!

I'm feeling positive going into February, how do you intend to manage your #spoonie life this month? Let me know in the comments!

J x

Making Memory (Jars)

I'm calling 2014 "The Year Of Social Endeavour": the idea for a Memory Jar came about after I spoke with my friend and fellow spoonie Diana on Twitter about our goals and plans for the year. Of course after a lot of research (faffing and scrolling) on Pinterest, I got inspired to design and decorate my own jar.

My mum had some Kilner jars that she was no longer using, so I put one of these to good use. I designed and printed a little lilac label for the front of the jar, and framed it on to the glass using decorative washi tape, which I bought from this Etsy shop aaages ago. I then added a cover for the top of the jar using a circular design from some fabric scraps I had lying around in my stash, and some ribbon which came free with an issue of Mollie Makes.

I'm using bright, bold origami papers that I got from Hobbycraft and writing little notes to myself, then folding them up and building a colourful confetti memory stash that I can open on New Year's Eve 2014, and relive all the wonderful things I have done, the achievements and memories I have made throughout the year. I already have 4 memories in the jar, and it's only the 15th of January! Also, being a spoonie is not without it's memory problems, so I will probably be in for some pleasant surprises come December 31st!

What creative plans do you have this year? Do you have any special crafty projects you want to tackle, or just simply some goals you want to achieve? What do you hope to be in YOUR memory jar in 12 months' time? Let me know in the comments :)

Look after yourselves,

J x

Quick and Easy Spoonie's Breakfast Smoothie

DISCLAIMER: I'm NOT a nutritionist/dietitian/food expert, this is just MY OWN humble opinion.

Get it? Got it? Good :) on we go...

Here's how I make my quick and easy "spoonie" breakfast smoothie. It's really easy to prepare. I use frozen spinach, it comes ready portioned in the bag and will keep for months. I paid under £2 for a huge bag which I would think has around 50 portions in it. I also use frozen raspberries, or you can use any berries you like. I put in a large handful's worth. The box I bought cost under £3 and I get 4-5 portions out of it. Things like this are on offer a lot too so keep a look out. Then I add one chopped banana. The ones pictured are fresh, but the riper the banana the easier it is to blend, and the sweeter the smoothie will taste. Everything goes in the blender, then I top up to about the 500 ml mark with orange juice. I suppose freshly squeezed juice is best, but cartons are just as good! I've tried to use key ingredients here for their energy giving and immune boosting properties. If you're not sure about adding spinach, you can leave it out, but I'd say give it a go because leafy greens are a great source of vitamins, plus I promise you can't even taste it once it's blended! This combination makes about a pint glass' worth.

Spoonie re-cap:

One portion frozen spinach, one large handful frozen berries, one chopped ripe banana, top up with orange juice to 500ml mark in blender; blend & drink!

Energy involved: Retrieving items from the fridge and freezer, chopping the banana, whizzing the smoothie (noise pollution), washing the blender, drinking glass and cutlery (leave it to soak and do it later!).

TOP TIP:

Defrost the spinach portion overnight beforehand to make it MUCH easier to blend. I just pop mine in a little plastic carton in the fridge and when I come down in the morning it's ready to pop straight in the blender.

To give you an idea of what this concoction looks like when it's blended, I have added an "after" photo:

Yes, I know you can see the spinach but I promise you can't taste it! I would describe it as having a fairly smooth texture, and a fresh taste, not unlike a basic mixed fruit juice smoothie (mentioning no brand names) personally I find that it helps to awaken my system in the morning. I won't say "wakes me up" because that would infer a miracle cure... ;) (LOLJK)

I hope you've enjoyed this post, please let me know if you give this a try and tell me what you think in the comments, I welcome constructive feedback!

J :) x

New Year 2014: Looking Ahead and Leaving The Past in The Past

The past few weeks I've been thinking a lot about how much my health has improved over the last 18 months, and how I've continued to learn to manage my symptoms to keep me "on a level" as it were. This involves pacing, eating right and getting good sleep. Finding balance out lives is something we all strive to do, whether or not we are "spoonies". I have come to the conclusion that I don't want my symptoms to define me anymore. Yes, they will always be there, but I want to get out and live my life, I'll be 31 in January and I feel like I am missing out on life experiences, however small. I have a list of things I want to do and places I want to visit, and I also plan to step out of my comfort zone a bit more in 2014 and confront my social anxiety, whilst also being kind to myself and not overdoing it.

So what does all this mean for this blog? I want to share more of my daily "spoonie" life with you, and stop getting bogged down with lengthy posts about how chronic my illness is. I tweeted a picture the other night of my "weekly cook-up" which is an exercise I do about once a week to make sure my freezer is stocked up with easy to prepare food. I don't have energy to waste on doing this daily, so I do it in a batch.

So I could make a little post about that. Practical stuff, knowledge and tips that I can pass on. Basically what I intended this blog to be about in the first place.

I'm rambling. What I'm trying to say is that, whilst I will always have my symptoms, they don't define who I am, and they shouldn't for you either. We are all human underneath, and we are more than just our illnesses.

I will continue to refer to myself as a "spoonie" but only in the correct context. I will continue to pace, eat mindfully and keep good sleep hygiene, just as someone who has asthma continues to use their inhaler-as a tool to manage symptoms. Nothing more dramatic than that.

This is my life and this is who I am, and I intend to embrace that in 2014.

Happy New Year everybody!

2013 Review

First of all, apologies for the late update. But of course what are you to expect with someone with ME/CFS? We're not exactly known for sticking to deadlines. It doesn't do us any good, and certainly isn't helpful to our health!

My focus for December is being kind to myself. I struggle a lot with my anxiety, and "letting myself off" doing things, as I feel guilty for sitting around doing nothing all day sometimes. But I am certainly not going to push myself any more, I learned my lesson about that a long time ago.

I have been focusing on my diet again in the past few months. I stand by the notion that food is medicine, and have been looking in more detail into the paleo diet, and the auto-immune protocol. High protein mixed with good quality carbs seems the way forward for me, but it is always trial and error. I have started batch cooking on one day a week, then I have food prepared during the week when I don't have the energy to cook.

I am going to the gym again, but have stepped it down from once a week to once a fortnight, again in an effort to be more kind to myself. I love to feel the endorphin rush, and I do manage to run on the treadmill in short one minute bursts interspersed with walking, I love that, but I also appreciate having a good relaxation session at the end of a busy work week as well. I am trying very hard to get out in the fresh air for short walks whenever I can during the winter months, as my body seems to shut down if I stay in the house with the central heating on for too long.

I have made a big personal discovery about myself in the past few months as well. I am not going to share it on the internet, but I will say that finding out this information has made me a lot more comfortable with who I am and as a result of that, taken away some of my self-conscious feelings. I still have a long way to go with this, but I am more comfortable with working on it now.

I have re-opened my art shop on Etsy (link to the left) and am only uploading things that I like. I have spent far too long trying to make things that I think other people would want, and weakly following trends to try and keep up with popularity in the art and design world. But thinking back to being kind to myself, I decided that I was only going to make things that I personally liked, and go back to loving art as my main hobby and just being creative for the sake of it. I have only had one sale, but that doesn't matter. I'm no longer in it for the money.

So to sum up all this waffle, if you have ME/CFS, or even if you don't; whoever you are be kind to yourself and find out what truly makes you happy, and be content with that. You will have won a big part of the recovery battle if you do.

It's coming up to 2 years (sometime next week I think it is) since I first fell seriously ill. I am presently extremely happy and content with my life situation and will continue to blog on a regular or not-so-regular basis about how I cope on a daily basis with ME.

Be kind to yourselves this Christmas, and here's to a contented 2014 :) x x x

It's Okay To Be Happy With A Calm Life : Quote Wall Art

When I first came across this quote I found it very reassuring and comforting, and I now use it as a sort of mantra in my everyday life.
Some people like to go out and socialise a lot, with ME/CFS I find that hard, I also don't enjoy it very much because of my anxiety. There are certain familiar social situations in which I am comfortable, but not very many. My small amount of disposable income means I can rarely take trips out by myself either.
However, I don't want to come across as self-pitying, and this is the whole point of the art work, the fact that "it's okay to be happy with a calm life". I am perfectly happy sitting at home listening to the radio and knitting, absorbing myself in a good book, or even making art!
We don't all have to be social butterflies, some of us are quiet types and some of us are louder and bolder and that wide variety is what makes the world a lovely place.

When us spoonies are frustrated that we can't do things, or annoyed by having to pace, this quote reminds us that it's okay to rest, and we know it will benefit us in the long run, we have nothing to feel guilty about.

How I see my ME/CFS started

Before I post the main details, I must explain that what follows is a short personal story of how I see my ME/CFS came about. The circumstances are personal to me, and not all cases of ME/CFS come about in the same way. The spectrum of cause and symptoms are so varied, and it is essential to bear this in mind. Disclaimer out of the way, then...

I'll begin by quoting Louise Hay. She says that "stress and worry creates feelings of guilt, fear, criticism and resentment". In the case of my ME/CFS, this started a vicious circle which led to tiredness, which further developed into the following symptoms: muscle fatigue, fibromyalgia, headaches, cognitive dysfunction, broken sleep, lack of appetite, hypersomnia, leaky gut and a depleted immune system, emotional stress, anxiety and depression. Left unchecked for a long period of time (around ten years in my case), led also to depression, and ultimately chronic fatigue (which is a myriad of the above symptoms). "Chronic" meaning long term, which then exacerbates the stress and worry, this state becomes normal for the body and mind, and therefore the process starts all over again hence the vicious circle analogy.
I believe that the only way to heal from ME/CFS at present is to take on an entire change of lifestyle. Not only do you have to treat the symptoms, you also have to treat the cause of the symptoms, otherwise you will just keep going round in the vicious circle.

The above is basically a journal extract from around 2 years ago, when I was still trying to get my head around what was wrong with me, and I wrote it in the early hours of the morning whilst reading "You Can Heal Your Life" by Louise Hay, a book recommended to me by a recovered ME/CFS sufferer. (Yes, recovered! She exists! Here!) I was trying to rationalise my state of health, and this was the most comprehensive description I could come up with at the time. As I've said, I believe you must discover the cause of your symptoms, whether they be physical, mental or even spiritual, before you can truly make changes and heal.

Hey, it might sound preachy and profound, but it's just my humble opinion.

How I came to be diagnosed with M.E/C.F.S

What follows is a very short account of how I came to be diagnosed with M.E/C.F.S. I feel that now is the right time to tell this story, it also helps to put the rest of my blog into a bit of context.

In July 2011 I finally decided that after ten years, it was about time I did something about the fact that I was "tired all the time". I was sleeping most of the day on my days off from work, just so that I could muster up enough energy to drag myself through the next block of 8 hour shifts.

I decided to start with the basics, so I just typed the following simple sentence into Google: "Why am I so tired all the time?" I got a heap of results all saying similar things including over-work, stress (in it's myriad forms), and then terms such as "under-active thyroid", "anaemia", coupled with the words "chronic" and "fatigue".

I was definitely chronically fatigued, but did I actually have M.E/C.F.S? More so did I want to admit this to myself? A week or so later my very understanding and empathetic GP told me that after doing a comprehensive set of blood tests that yes, that was the most likely explanation for my condition (basically it was a diagnosis of exclusion, i.e it couldn't clearly be anything else), but a neurologist would be able to confirm the diagnosis.

My GP suggested that I have some time off work there and then, but I was adamant that I would be okay and I would fight it (literally it turned out) and I would be healed by the time I was 30. This gave me 18 months to "fix" myself.

For the next six months I researched myalgic encephalomyletis, or chronic fatigue syndrome. I read a lot of books about the illness and referenced many things on the internet. I kept going to work. I felt that if I ignored the symptoms (!!!) to a certain extent, rested as much as possible on my days off, made small changes to my diet, kept up with my Perrin and acupuncture appointments, as well as changing my duties and responsibilities in my job, that would be enough to overcome the illness. It wasn't.

By November 2011 I was almost permanently suffering with a heavy cold and sinus infection, which eventually worked it's way into my digestive system so I wasn't eating properly either. I was called for jury duty, and this put extra stress on my system both physically and emotionally. No sooner was that over than I went back to work, thinking that if I could just get through the busy Christmas period (I work in retail) that I could start afresh in the new year.

I managed one shift back at work after jury duty, and then got REALLY sick, went back to the GP, who basically said (in the nicest way possible) "I told you so", and signed me off for a month.

She also recommended I start a course of anti-depressants, as I was showing almost all the symptoms of depression. I decided to take the herbal remedy route, one of the main reasons being that I cannot swallow pills, but there were myriad factors involved. This was a completely personal decision, and without getting into the politics and statistics about it, all I know is that if I hadn't started taking them, I would not be typing this now.

As I have stated before, this blog is NOT medical advice. It is a collection of tips and advice, written by someone who has personal experience of the condition known as ME/CFS. It is filled with positive, inspiring and motivational words that have helped me overcome my symptoms of ME/CFS. They may or may not work for you, but I need to share them because I want to help others.

My Recovery Journey over six months on...

I have decided it's time to resurrect this blog, under a slightly different theme. From now on my focus will be on blogging about how to focus on staying well after going into remission from ME/CFS, which is where I see myself now.

I have given the blog a new look, and made it easier to be viewed on phones for those of you who find it difficult to access a computer.

I have had a long time to reflect on how I want to share my knowledge and personal experience of having ME/CFS and have come up with a number of ways to do this, including making art and using Twitter as a platform for fellow spoonies to connect. You can even follow me if you want!

There will be two future posts, one telling a (very short) background story of how I came to be diagnosed with ME/CFS, and another about how I see it started. From then on I want to focus on the positives and the future, and share my tips and experiences to help others.

I hope to re-kindle some interest in this blog, more importantly, if I can help just one person that would be enough for me.

I hope to see you here again soon.

Please leave a comment if you would like to see me blog about a particular aspect of recovery and I will do my best to post something helpful :)

CFS Progress Review: One Year On...

A year ago today I phoned in sick to work and didn't go back for seven months. Reading back over my blog posts the time seems to have flown by. I am going to try and condense the last 12 months into a concise blog post that sums up the best and worst of the last year.

Starting with my 2012 Manifesto in January:

Look at how I can change aspects of my lifestyle to benefit my physical and emotional health
Make time to develop my art, craft and vintage business(es!)

Learn to trust the process of life and all it's inevitable unpredictability

One Thing At A Time
Stop doing what I think others/society/”they” want me to do and start doing what makes ME happy and healthy.

In the main I have stuck to this throughout. After completing a course of Cognitive Behavioural Therapy (CBT) I have a much more methodical and reasoned approach towards any problems that crop up. I regularly practise meditation to help clam my mind and body, and this helps me go about me life in a calm and relaxed yet alert and mindful manner. My Buddhist beliefs also reinforce many of these factors. In February my anti-depressants had started to have an effect and I was having more reasoned, rational, constructive and positive thought patterns.

February: Starting simply with nutrition and diet I adopted the practise of drinking four pints of filtered water a day. Recently I have lapsed with this, and the process of re-reading my posts has reminded me how important it is, so I am back on the water wagon again! A frozen lemon wedge adds a lovely cool zing too! I quickly realised my cow's milk intolerance had returned from childhood, and as we know, CFS has lots of links with candida, thrush and yeast infections so I discovered I was intolerant to yeast too.
I started doing my food shopping online. This gave me back a sense of independence whilst also enabling me to conserve energy. I think this simple idea is one of the best inventions of recent times, and I am so grateful to the friendly Sainsbury's drivers-I never had any problems with my orders and would highly recommend the service.
I quickly realised that my energy levels were directly related to the food I was eating. I now focus on natural foods, minimal animal products, and freshly cooked produce whenever possible; although if I am having a low energy day I do not berate myself for putting a frozen pizza in the oven, and I do allow myself treats, but my body will not hesitate to tell me if I am not eating well!
Fascinating fact: In February, a “good day” meant I could do 45 minutes of light activity before I had to lie down and rest completely for 15 minutes. Incredible to think that I went from that, to presently working four 4 hour shifts per week!

March: By March I was beginning to feel better, but I knew the key to a great recovery was PACING. I cannot stress this enough. I hated the idea at first, and even though I had read loads and loads about it, I still wasn't sure. But I gave it a go, and started making notes of every little thing I did throughout the day, what time I did it and for how long. This gave me a really clear idea of how I was proportioning my time, how productive I was being and where I could conserve energy by doing something called “switching/pacing” (give it a Google!)
As well as being productive throughout the day, I knew I had to address my sleep hygiene and my bedtime routine. I downloaded some relaxation mp3's, which I still use (they're amazing), and made sure I kept a regular bedtime and waking routine. I was getting to the point where I could be up and dressed for 9am, even though I might not do anything the rest of the day!
I was also able to incorporate a bit more exercise into my daily activities, even if it was just walking outside for a few minutes. Not only was this a huge step physically, it was also a huge mountain to climb for me within the psychological aspect of my recovery. I hated going outside as I feared people would see me and think I was “skiving” from work, as to all intents and purposes I looked well (as we know this happens with ME/CFS), even though I still felt physically and mentally exhausted the majority of the time. But getting out and about, even for short periods, helped boost my confidence and lessen my depressive symptoms massively.

April & May:

“When you have ME/CFS the last thing you need is pressure. Pressure creates stress, and stress exacerbates ME/CFS.”

By April I was cycling 2 minutes a day on my exercise bike, and getting out for 6 minute walks when I felt up to it. I was keeping up with all the goals I had set myself so far, like drinking plenty of water, getting healthy, natural foods inside me, pacing, and having a good sleep routine. In May I began my course of CBT. Re-reading my blog posts now I can see that around this period of time, my writing became much more cohesive, upbeat and positive. I really couldn't recognise myself in the tone of the early posts.

June: In June I saw my GP for the last time, as she declared me fit for work! I had actually asked her to do this as I had been feeling much much better for quite a while, and was actually now beginning to get frustrated sitting at home all day. I wanted something to do. I wanted my life to begin again.

I came up with a three-point manifesto to take me through the coming months:

Maintain a good state of health by applying all knowledge learned within the past twelve months.

Steadily increase working hours up to sixteen per week, using phased return.

Enjoy creative pursuits and other hobbies to enhance physical and mental well-being.

A couple of weeks before I returned to work, my beloved feathered friend, Jimmy the budgie, passed away. I was so sad to lose him, but I somehow knew that he knew he had helped me through the most difficult time of my life. He was a fluffy old bird, and it was time for him to go. I will never forget his amusing chattering, singing and squawking! He now regularly sends a whole menagerie of different birds to my back garden where they feast on nuts, seeds and fat balls!

July & August: As I was back at work, I wanted to make sure I kept my immune system topped up. To this day (touch wood) I have not yet caught one cold or bug that's gone round at work, while colleagues have been smothered! I am obviously feeding and treating my body correctly now.

I decided to go vegetarian for a month, and this increased my energy levels noticeably. I do eat meat now, but I eat generally with a much more mindful approach, and really think about what I am consuming and why.

I finished my course of CBT in August, my therapist was extremely happy with the improvements I had made. I review everything monthly now, just to refresh where I am at emotionally, and to notice if there is anything in my life I am finding difficult. I can then go back and apply the CBT principles to help me overcome this.

September:

Time for another manifesto:

1) I am single and I embrace this freedom and independence
2) I have no interest in having children and this is fine
3) Some people might see my job as "boring" or "dead end", but I find it fulfilling and challenging
4) I am happy for making art to be my hobby or second income, I much prefer this than striving to achieve in an over-saturated industry
5) Taking time to relax and take care of myself is just as important as wanting to actively achieve any goal I may set myself 

I believe that full recovery from ME/CFS is not possible until you accept that your lifestyle and every aspect of it must change. You must want this change, be ready for it physically and emotionally, and be happy with it.

October & November: By now I seem to have developed a new rhythm in my life. One which is beneficial and fulfilling to my mental and physical health. I try to apply mindfulness to my daily activities, be they at work or at home, and be more self-aware. I listen to my body more by applying meditation techniques, and communicate with my body and my self. I have only recently started being creative again, and creating art that I really really like, instead of striving to appeal to the masses. I look forward with enthusiasm to my free time, as I have lots of exciting projects that I am in the midst of. I really enjoy cooking healthy meals and searching out new recipes, and I enjoy getting out in the fresh air and power walking-recently I walked 5k in under an hour!

December: So here I am, one year on. I hate getting philosophical or sentimental, especially when I know I am publishing this for the entire internet to read! But this time last year I had a raging sore throat, a cold that wouldn't go, and was so physically tired I had to drag myself up the stairs on all fours to use the bathroom. I was in a very very very black place come 23^rd December, and was searching for all sorts of things on the internet that one should never have to read. I wouldn't wish what I have been through in the past 12 months on anyone, anywhere, ever, and I think it's high time the authorities concerned started taking this illness much more seriously.

If my blog has helped only one person change one thing about their ME/CFS affected life that improves it, then I have done what I set out to do 12 months ago.

I wish everyone who is suffering to whatever degree, the very best for the future. If you know of anyone who has this illness please don't laugh it off or make light of it, be there for the person and help them if you can.

Thank you all so very much for reading.

This blog post is written in memory of my amazing Grandma, Bernadette Mawdsley,

who passed away peacefully in her sleep on Thursday 22^nd November at the grand old age of 90.

Rest in Peace Grandma, night night your God Bless xxx

Runner vs. Chronic Fatigue Syndrome

I take no credit whatsoever for this image. I found it on Pinterest

If you keep up with my recovery progress on Twitter, you will know I regularly log my fitness progress on the website Walk Jog Run. I have been power walking for a couple of months now, and by following the training plans on their website, I have been able to pace myself and can now walk 5k in under an hour! Then something really unexpected happened-the guys from Walk Jog Run wanted to feature me as Runner Of The Week! Click the link to see my interview with them entitled "Runner vs. Chronic Fatigue Syndrome" where I talk about my CFS recovery and how getting out in the fresh air has really helped my progress.

CFS Progress Review: October 2012

I'm a bit late publishing this. I actually wasn't going to blog at all this month, simply becasue there's not actually that much new for me to tell you right now. I am keeping up with my daily practices of eating well, staying hydrated, working mindfully and exercising, plus a myriad of other things that I have mentioned previously in more detail. Nothing is perfect all the time, I don't eat right every day for example, but I know when my body needs something as it just tells me. I feel very "tuned in" now and that helps me to combat any "under the weather" feelings I might have. My body also tells me in no uncertain terms when it's had enough and it's time for me to rest-very important!

I am taking some time off work the next couple of weeks. I plan to use the time to be highly creative, and also focus on my self care. I am planning to spend a lot of the time in silence, or with peaceful music in the background, and live simply, leaving the hustle and bustle of everyday life behind, at least for a few days. I am hoping to be able to have a few 24 hour periods of digital sabbaticals too-that means no internet! I tried this last Monday and read an entire book-lovely!

As I am writing this in November, the end of this month and the beginning of December brings a lot of CFS related milestones along for me. I will be blogging about this in more detail next time, that post might just be a tad longer than this one!

Take care for now :) x