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