Sunday, July 23, 2017

Day 18 Tips and Tricks for Sofa Heroes: The Hero's Journey

Dreaming for a brighter future for people with ME/CFS

Hi Everyone!
Today I'm keeping it short and sweet as this is the first day in a few weeks where I was able to socialize and have some fun.

The Hero's Journey as described by Joseph Campbell can help us make sense of our human experience, and start to see ourselves as the Hero, The Leading Lady, of our own lives.  The clip I shared in the previous links talks about the cycles of the Hero's Journey - and how we can apply it to the struggles and victories of our own lives.

As an animation lover and storyteller I've learned how to use stories to make sense of my own life, to apply metaphors to my own personal situations, and to see life in general as a story.  I love the quote "When you're having a bad day - try to see your life as a comedy instead of a drama". I'm not sure who said it but it's a great piece of advice.

I want you to share your favorite things that keep you inspired - the few things that even though you are ill, are ideas or stories or tools or toys that keep you inspired and looking towards a hopeful future.

I grew up as an artist and went to school for film and animation - so I love storytelling - both as an escape AND for making sense of my reality. I love animated films and my go-to's when I need to be lifted up are Disney's Tangled and Meet the Robinsons.

Tangled is the perfect allegory for being stuck in a decade of chronic illness (the tower) and for what life would be like once we're free (running and jumping) - but it also helps me realize what fun I can have while I am here - painting and reading and dreaming.  Everyone has their own dream - or their own inspiration (my boyfriend's is Rocky) - what's yours?

I also love Meet the Robinsons - I relate to Lewis - the orphan living in a world that hasn't caught up to him yet - and growing into a world created by his ideas - that the future is always brighter, that we're all always evolving.  Another good one for this idea is Big Hero 6 - whatever happens - there's always a new story, a new hope. It's also where I get one of my favorite "mantras", Keep Moving Forward, one of Walt Disney's favorite sayings.

So - I know inspiration and movies and stories that touch you are different for everyone - so I'd love to hear what inspires you.

What movies or stories tell your hero's journey?

Feel better - see you tomorrow.

Saturday, July 22, 2017

Day 17 Tips and Tricks for Sofa Heroes: Research

Facts are always friendly, Help me fund the OHC Study
Hi Everyone!

Today I'm going to talk about some of the current research and hypotheses presented for the cause and treatments for ME/CFS.
There is a massive umbrella of illnesses without an understood cause or cure, so people with ME/CFS can often relate to the life experience of people diagnosed with all types of "invisible illnesses". The beautiful thing about science is that discovering something in any illness is a step forward in helping so many more people - especially along the spectrum of neuro-immune illnesses, so it's usually all a net benefit.

Please put your critical thinking caps on - ongoing research means it's a work in progress - and there have been dangerous initial studies made in the past (like the controversial study that XMRV, a retrovirus, was the cause of ME/CFS which made a lot of people go out and spend a lot of money testing for this retrovirus, and the CDC even sending out a letter asking people with ME/CFS not to reproduce - this was later retracted, and the ongoing struggle against the NICE guidelines recommending cognitive behavioural therapy and graded exercise therapy as a treatment, making most patients sicker because it ignores the metabolic degradation in post exertional malaise).

For now, here's some research going on in the field. I like to get updates on research because it helps me feel like I'm not all alone out here - that there are excellent, brilliant people out in the world doing great research to discover why we get ME, how to cure it, or how to just feel better.

If you ever feel like the world has forgotten about ME - Just take a look at this massive sheet of current investigations going on in ME/CFS.   I want to thank Paul Watton for making this available.

You can see how because ME/CFS affects multiple body systems, there are studies going on in virtually every field, from infectious disease to neuro immune to endocrine system and gut bacteria to neurology and metabolic studies.

Here's some of the ones I'm following below:

The Open Medicine Foundation is working on the End ME/CFS Project to find a clinically diagnosable biomarker in ME/CFS.  They're working on a metabolics study focusing in the dysfunction of the mitochondria, and studying the most severely ill patients for a big data study at Stanford University.  I'm a monthly supporter of The OMF as they have consistently been involved in research and activism, and have personal investment in these studies as shown in Forgotten Plague (I'll share more info on documentaries later).
If reading is too much, you can keep up to date with them on their OMF YouTube channel.

Here's a quick video on the theories presented about infection in the vagus nerve, or clumps of infection on various nerve points, the basis of many ongoing studies.

Here's some interesting results coming out of the subgroup study going on UAB's Neuroinflammation Pain and Fatigue Lab showing that there could be an auto-immune group, and a chronic infection group, as well as further subgroups. This means that trying to treat all people with ME/CFS the same way could be a huge misunderstanding.

As far as research for treatment goes, the most interesting to me right now is the study on Rituximab - a treatment used for Lymphoma, that so far has some promising news for wiping out ME/CFS in some patients (for the subtype that is auto-immune, again the importance of discovering the subtypes).

I'm raising money with this 30 day blog project for The Optimum Health Clinic Foundation which is working with the University of Surrey on a randomised clinical trial to prove that their integrative approach helps many people with ME/CFS (some have recovered with their approach, many find their lives much more manageable and symptoms improved).  They're doing this so that the integrative practices can be supported by the NHS here in England so that income level isn't so much a factor in helping patients feel better. I have been a patient with the OHC since 2010 and they have helped me immensely in managing my symptoms and living better.

What are your favorite studies going on right now?
Hope this helps, I hope you feel better today, and I'll see you tomorrow!

Go to Day 1 for the full table of contents of this project 

Friday, July 21, 2017

Day 16 Tips and Tricks for Sofa Heroes: Yoga Nidra

Help ME/CFS patients rest easy with support from the OHC
Hi Everyone! It's Yoga Friyay!

Day 16 out of 30 Tips and Tricks for Sofa Heroes - We've made it half-way through! Thanks for sticking with me - your comments and feedback on all social media have been really encouraging, and thanks so much for the donors who made contributions to my JustGiving Page raising money for The Optimum Health Clinic Foundation and their efforts to bring relief to patients with ME/CFS.

Today I want to introduce to you Yoga Nidra. I thought this would be very quick but unfortunately I haven't found resources online that quite share the experience I had in a live class of Yoga Nidra. So if you have a yoga studio (and you're well enough to get out to a class) I do highly recommend signing up for an hour long Yoga Nidra class.  Yoga Nidra is designed to get you into a state of deep relaxation while you are still conscious - and the result is that when you get home and go to sleep at bedtime you sleep very deeply (I had my best sleeps after doing Yoga Nidra classes in Colorado).

I'm going to try my best to replicate a good starter practice, but the simplest instructions are:

-Roll out your yoga mat and do some light stretches to get out any niggles.
-Lie flat on the mat in savasana ("corpse pose")
-Support your neck and under your knees with a pillow,
-Use an eye mask to block out light
-Cover yourself with a blanket (if you need to be warm).

The idea is then to lie on your back, conscious/awake, for 20 minutes to an hour with a guided relaxation to send you into deep relaxation but keep you awake (if you fall asleep that's fine it just means you really needed sleep).

If you can't find a class, try these videos to set up your own practice at home.  First do light stretches with Adriene and follow up with the 20 minute guided relaxation.

Lie on the mat on your back supporting your knees and neck
Here's a Yoga Nidra Guided Meditation that I like because it has music, meaning that you have something to focus on in between the talking so you don't fall asleep.

I had very bad fibromyalgia while I was doing this practice in a class about 5 years ago and was really concerned with the discomfort - the yoga teacher was amazing at leading me through breathing me into the pain and allowing it to be as I lay there. (So I do highly recommend seeking a live class if you are able to.)

You can make adjustments as you need, but the most important thing is to use this time and space to listen to your pain, pay attention to it, and breathe into it.  You will have a much deeper, more relaxed sleep in the evening after you do.

Let me know if you try it, if you've been to a great Yoga Nidra class share it below, and let me know how you get on!

Feel better - More tomorrow!

If you feel so moved to help The OHC bring an integrated approach to more ME/CFS patients, Click Here to Donate to the Optimum Health Clinic Foundation

Thursday, July 20, 2017

Day 15 Tips and Tricks for Sofa Heroes: Wayfinding

Help other spoonies find their way to feeling better with The OHC
Hi Everyone!
Today we're going to quickly mention a mindfulness technique perfected by fellow spoonie and author Martha Beck - living your life according to your inner compass.  This concept is deliciously elaborated in Martha's books, Finding Your Own North Star and Steering By Starlight.
Wayfinding is how sailors track their course using the stars

Finding your way in the world when you're chronically ill, especially with some mystery illnesses that modern medicine doesn't understand yet, can be really tricky - and can feel devastating at first when what we expected of our lives is not our reality.

Through her own lifetime of chronic illness and pain, Martha Beck has learned to tune in to her own wellspring of inner guidance that always can help her take the next best step in any given moment. She calls this the inner compass.

In simple terms, your inner compass is your intuitive knowing of what is best for you, where you are being led, and what is the next best step for you right now.

The key to tuning into the inner compass is to become very present - be right here in the now - and ask a simple question that gives you a "yes" or "no" response, or a "yum" or "yuck" response, or as Martha discusses in one of her books, a "shackles on" or "shackles off" vibe - does it make you feel stuck or does it make you feel free.

Inner Compass says "YESS!"
Inner Compass says "Nope."
You can use this for so many different things when dealing with chronic illness, should I lie down now? Is this meal going to help me heal? Does it bring me happiness to go to this job? Is there another way to be? Is there another way to do things?

For those that are familiar with the spoon theory, following the guidance of your inner compass can help you decide how to best use your spoons, and often, when you're moving in the direction of your joy, you may even have more spoons to spend.

If this sounds a bit airy-fairy wuwu to you - for a moment just suspend your disbelief and see it as a completely practical tool for dealing with a difficult moment.  You're spiraling out of control worried about not feeling well at work, imagining having to quit your job, imagining losing all your money and becoming homeless, and realizing you're living in a story. Come back to the present moment and ask "Do I need a break right now?" take a breath and hear the answer.  Instead of quitting your job (right now) you might just need 10 minutes in the sunshine for the moment.

When the idea popped in my head for this 30 day project I checked in with my inner compass to see if it was something I really wanted to do. I felt a wooosh from behind me like a strong wind filling my sails and that was a big yes. Even with the energy cost, being sick of seeing my face every day, the horror of the vulnerability of putting myself out there everyday,  and taking the time to work on this project, there's still a big YES behind it for me. NOT doing it would be the resistance for me.

Sometimes your answer sounds like a word, sometimes it's a feeling.  Just give it a try, you have nothing to lose.

Unleash your inner Moana - try wayfinding with your inner compass

I hope you take the time to test this for yourself today and let me know in the comments what you experience!

(and if anyone thinks you're crazy for following your inner compass - that probably means you're doing it right. As Scrooge said on Christmas Day, "no I haven't taken leave of my senses, I've COME to them." )

"Be deliberately weird. I respectfully do not care if people think I'm weird when something's healing my body and my soul." - Martha Beck

Feel better and we'll be back tomorrow.


If you feel so moved to help The OHC bring an integrated approach to more ME/CFS patients, Click Here to Donate to the Optimum Health Clinic Foundation

Go to Day 1: What ME Feels Like and About This Challenge!
Go to Day 2: Gentle Movement
Go to Day 3: Meditation
Go to Day 4: Protein and Plant Power!
Go to Day 5: Sleep

Wednesday, July 19, 2017

Day 14 Tips and Tricks for Sofa Heroes: Snacks

Bring functional medicine to more people with ME/CFS

Hi Everyone!
Today we're talking about snacks and small meals - when you're learning new ways to cook and eat it can be best to start small, so I hope these little ideas help! Share your favorite snacks and recipes in the comments! If you have ME/CFS its a good idea to have small meals every 3-4 hours, or a protein rich snack in the afternoon to keep your energy levels steady.

Hungry? Here's some ideas!

-Protein shakes - use the protein powder of your choice, mix with the liquid of your choice (almond/coconut/oat milk) add some greens (spinach or kale) and a couple berries (frozen for extra shakeyness!) and mix with a blender! (avoid the recommendations to add honey or sugar of any kind if you can, and pair down on the fruit additions) - adding oats give some fibre too!
Pea protein, coconut drink, greek yogurt, spinach, seed mix, oats, blueberries and banana (frozen)

Here's your alternative unicorn frappuccino ;)

-Spelt/Oat Cake/Rice Cake with topping (avocado, hummus, cucumbers, cottage cheese, tomatoes, nut butters)

-Throw some frozen green beans in a pan, and once defrosted chuck in some sliced/flaked almonds and fry til brown (I use butter, but you can use an oil of choice as well to start off the cooking)

-If you can tolerate dairy, mix some nuts in with greek yogurt and half a banana (we want to limit fruit as to not overload sugar responses and crashes)

-Nuts and seeds are perfect to keep by the desk/bed to snack on, great sources of minerals and protein.

-carrot and celery sticks with hummus, avocado, or nut butter

-Protein balls - prep a dozen protein balls and put in the fridge for a few days of pop-in-your-mouth easy protein goodness! Play around with nut butters and fillings, seeds, coconut flakes, etc!

-Eggs cooked any way are a simple quick and easy way to get a protein boost. Serve with rye bread and avocado for some super yum. Can you tell I like avocado?

-oatmeal is a perfect base for all kinds of toppings. You can even prep some baked oatmeal snacks and keep in the fridge for a few days. Cinnamon is great for balancing blood sugar, and you can add protein powder (if not too hot) and nuts for more protein.

A great way to make sure you always have snacks too is to save leftovers of your big cooking and just eat a small serving of those the next day.

Here's a Pinterest Board with more ideas!


If you feel so moved to help The OHC bring an integrated approach to more ME/CFS patients, Click Here to Donate to the Optimum Health Clinic Foundation

Go to Day 1: What ME Feels Like and About This Challenge!
Go to Day 2: Gentle Movement
Go to Day 3: Meditation
Go to Day 4: Protein and Plant Power!
Go to Day 5: Sleep

Tuesday, July 18, 2017

Day 13 Tips and Tricks for Sofa Heroes: Heart Rate

hmm... I'm not punching myself in the face... :D
Hi Everyone!
Day 13 and we're talking about Heart Rate

Besides heart abnormalities in ME/CFS, having a heart rate tracker can really help you understand your activity levels and find a marker for over-exertion that you can track yourself every day.

Bio-trackers are some of the coolest pieces of personalized tech that can help us put numbers to our experiences.  I have had a fitbit for about 3 years to help me monitor my activity, and upgraded to one with a heart rate monitor last year after I had numerous tests for abnormal heart activity (being a 30 year old in a cardiac unit surrounded by 80 year olds is quite an experience).

I don't technically have any cardio diagnosis other than being on-watch for hypertension but I've experienced palpatations and irregular heart beat, and my heart rate tracker has enabled me to see tangible results to my experience.

In addition to just watching the heart rate monitor, I found this great trick about using your heart rate to stay within your energy envelope (that tricky boundary you want to stay within to avoid PEM or a crash).

Find your target heart rate for someone with ME/CFS and stop, sit or lie down if you exceed it (as soon as you can!)

The formula goes:
Find your maximum heart rate: 220 minus your age (for me this is 220-32 = 188)
Now the range for ME/CFS can be between 45% (x 0.45) and 60% (x 0.6) of this number depending on your level of disability (for me this means my max heart rate should be between 84.6 - 112.8, I have found if I keep my peak at 115, I'm generally OK.

Today my heart rate when I got out of bed was about 70. (joints ached but was generally OK)
When I was sitting down blow-drying my hair it was 106. (was feeling pretty crappy)
When I climbed to the top of the little hill at the end of my street it went up to 136 (DANGER! I might faint.)
When I got home from my short outing my heartrate was back down to 86 (surprised it was this low, ready for a little rest).
When I'm lying in bed doing deep relaxation I can sometimes get my heart down to 55, and that feels like a nice place to be.
Fit Bit says my resting heart rate is 63, which is pretty dang normal (healthy range is 60-100, with very healthy athletes achieving resting heart rate in the 40's), though I'm never in the 60's during the day - I am usually in the 70's and 80's doing very low impact tasks.

I'm not doing a very good job of staying within my energy envelope - even after many years my energy envelope has varied a lot - and for no reason that I can really track - not diet, meditation or life circumstances that significantly have a factor on how well I am in general.  Last summer I would walk for 1-2 hours every evening playing Pokemon Go. This summer just walking across the street gets me to my maximum heart rate.  I have had one crash after another since January - which is one of my inspirations for doing this blog - re-learning the tips for myself so that I can give myself the best chance.

I'm very interested in this study about working on building strength while lying down - what do you think?

What's your favorite bio-tracker? Has tracking your heart rate helped you? Let me know in the comments!

If you feel so moved to help The OHC bring an integrated approach to more ME/CFS patients, Click Here to Donate to the Optimum Health Clinic Foundation

Go to Day 1: What ME Feels Like and About This Challenge!
Go to Day 2: Gentle Movement
Go to Day 3: Meditation
Go to Day 4: Protein and Plant Power!
Go to Day 5: Sleep

Monday, July 17, 2017

Day 12 Tips and Tricks for Sofa Heroes: Loving What Is

30 days of Tips and Tricks to raise money for The Optimum Health Clinic Foundation
Hi Everyone!
Welcome to Day 12 - I want to introduce you to a transformational practice called The Work of Byron Katie as described in her book, Loving What Is.

Being sick sucks, and these tips I'm giving over 30 days are meant to ease both physical and emotional suffering that comes from being a spoonie/warrior/sloth/pwme/patient with a debilitating chronic illness that is poorly understood.

I got sick in 2006 when I was finishing my bachelor's degree, and it wasn't until 2 years later when I was half-way through my master's degree that I got a diagnosis. This meant that when I got too sick to carry on into the world of career and adulthood I had some very dark nights of the soul trying to understand my worth, purpose, and trajectory in life.

At this time I read a lot of books on finding happiness just trying to be OK with what was happening to me.

The most active and transformational practice I found (other than sessions with amazing therapists) was The Work.  The Work is a worksheet where you start with a statement (that is causing you considerable emotional distress) and go through a series of questions and turnarounds to find the ultimate reality of your statement without any story.

1. Is it true?
2. Can you know for sure that it's true?
3. How does believing this thought make you feel?
4. Who would you be without this thought?
5. Turn the thought around.

I had to do this with my anxiety attacks over crushing student debt, the ongoing mourning and confusion over a difficult family situation, and of course, what the heck my life purpose was now that I was only functioning a few hours a day.

I'm going to share these videos with you to give you an idea of how The Work goes, and you can pick up the book Loving What Is to see how Byron Katie became free of her stories and developed The Work to make sense of her experiences.

The end result of this is a lightness, a detachment to the story, a realization of the structures that we build up around ourselves in our minds, and there is a sweet sweet loving gentle humour to truth. And then we can heal.

Feel better and I'll talk to you tomorrow :)


If you feel so moved to help The OHC bring an integrated approach to more ME/CFS patients, Click Here to Donate to the Optimum Health Clinic Foundation

Go to Day 1: What ME Feels Like and About This Challenge!
Go to Day 2: Gentle Movement
Go to Day 3: Meditation
Go to Day 4: Protein and Plant Power!
Go to Day 5: Sleep