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!

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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