Monday, July 31, 2017

Day 26 Tips and Tricks for Sofa Heroes: Cure vs Remission

Click here to donate - Help bring support for recovery to more people with ME/CFS - 

According to the CDC and NIH, there is no cure for ME/CFS - because if we do not know the cause of ME/CFS we cannot know what the cure is.

Here I want to discuss the difference, however, between the words Cure, Remission, and Recovery.

Remission - Remission generally means that a patient is living symptom free, in ME/CFS this means that the patient can lead a normal life, including exercise without post exertion malaise (a defining symptom of ME/CFS). The person can have an active work life, family life, social life, and be physically active without any restrictions previously experienced with ME/CFS. A remission can ALSO mean, however, a significant improvement of symptoms - so a remission can also be defined as an improvement of symptoms without being completely resolving the disease. A relapse, then, is when symptoms or conditions return after a period of remission.  If you have a contagious virus, you can be in remission and still pass on the virus because unless it has been cured from the body, it is simply dormant.

Cure -  A cure requires a biomedical marker to distinguish the explicit cause for an illness, and the later absence of the biomarker and symptoms to legitimize a cure.  In order to have a cure for ME/CFS we would have to be able to see a biomedical cause (for example, a virus or bacterial infection of the vagus nerve) as a diagnosis, and then eliminate this biomedical cause and its recurrence (in Cancer the patient is said to be "cured" after 5 years of remission - 5 years without any malignancies).

This is why we don't have a cure for tough viruses - viruses stay dormant in the body, leading to remission of symptoms when the immune system has built up enough resistance to the virus, but bacterial infections are cured by antibiotics, eliminating the bacterial infection from the body. (Cold and flu viruses do generally leave the body after a few weeks, but retroviruses and other viruses like epstein-barr virus, which is found in 90% of adults, will remain in the body for a lifetime). We don't have a "cure" for the common cold because it is a virus that mutates each cycle - but once the virus leaves the body (a proper immune system destroys the virus with the assistance of being hydrated, well rested, and supported nutritionally), you are cured of it.

Recovery - Recovery can be defined across a wide scale of remission.  Recovery can mean anything from a slight improvement of symptoms, to something more like a full remission that leads to a cure. Some patients with diabetes have reported to be recovered (or reverse) diabetes by making lifestyle changes, but it doesn't mean it eliminates the predisposition to the condition.  With ME/CFS the goal is in recovery - supporting the system so that suffering is lessoned and there is a path paved towards remission.

Why this matters -

The term "recovery" has been grossly misused in the PACE Trial here in the UK.  The PACE trial study indicates the graded exercise therapy and cognitive behavioural therapy led to "recovery" of the majority of test subjects - however the use of the world "recovery" still applied to patients who got WORSE as a result of the trial - or that the term "recovery" applied to people who were still severely disabled. In this terrible case many people with ME/CFS were prescribed graded exercise therapy and became worse to the point they did not recover to their previous levels of health.

If you're a patient desperately trying to get better - please do not be duped by anyone promising a cure.  At best, we can understand ME/CFS based on symptoms alone and the reported suffering of patients. There are some tests and biomarkers that can help - like mitochondria functioning and vitamin and mineral levels, and viral overload levels, as well as taking the stress off of any other imbalances in the body that can be found with blood tests, and tackling these little symptoms can help the body have a better chance of healing itself.

I have met and heard stories of many people who have achieved recovery (in some cases it would even be defined under remission or cure), mostly through The OHC's Recovery Stories.  Both my nutritionist and my therapist have fully recovered from ME/CFS and share their stories through The Optimum Health Clinic. I've been working with them for several years and they're wonderful people working to help people recover from the same illness they once had.

Recovery or Remission is a completely valid and honorable goal to aim for - if you're looking for a cure or nothing, you could be suffering for a long time doing nothing.  The possibility of feeling better, though, is available right now with help from people in integrative healthcare and functional medicine.  While recovery or remission isn't necessarily possible for everyone using integrative methods, the amount of people it has proven to help is incredibly significant.

See Alex Howard's (founder of The Optimum Health Clinic) latest video on what to expect from recovery.

Here's a clip from some of the recovery stories from The OHC.

The Optimum Health Clinic provides an absolutely crucial service to patients with ME/CFS and Fibromyalgia in that they help people recover and remiss from their symptoms through lifestyle changes.  It's so important that this work is not limited to patients based on their income, so that's why I'm writing this blog challenge - to raise money for the studies that will validate the work done at The OHC so that more people have access to treatment and therapies that will help them right now while research is being done to solve ME/CFS.

If you found this helpful please help me raise money for The OHC to bring integrative health care to people going through chronic illness.
In the UK Text SOFA68 £2 (or the amount you wish to donate!) to 70070 from your mobile

Go to Day 1 for the Table of Contents of the Sofa Heroes Challenge

Sunday, July 30, 2017

Day 25 Tips and Tricks for Sofa Heroes: Simplify

Support my JustGiving Campaign to bring Integrative Health from the OHC to more people living with chronic illness.

- This blog post has some cursing in it - I am tired today and some four letter words are needed to easily convey a message. -

Learning to live simply - it's not easy.  I left a busy life in Los Angeles and moved to Europe 5 years ago to live with my boyfriend.  I came over with two suitcases and very little money and started building my life from scratch, with the little freelance jobs I could get to keep a flexible schedule working with my health problems (it took me 3 years to buy a proper desk chair haha).

Minimalism at it's best ideal is that you have enough money to buy simply the best of what you need and no more - but it ignores the rest (the majority) of people who are just scraping together what they can to get by - and who keep everything they collect in case they need it some day.

However - I want to iterate that letting go of junk that's really not serving you is the best way to lighten your load and move forward towards a life where you are better at taking care of yourself.
Studies show that having too much clutter, mess and stuff can cause more stress, depression and anxiety - not things you need to add to your already overloaded healing body.

This year I moved for the 15th time in 15 years - and I got rid of everything that really didn't serve me. I cleaned out my closet and cleared my calendar.  I can't keep traveling and pretending I'm well when I'm sick.

When you're sick is not the time to try to force your way out into the world, and it's really helpful to learn as early on as possible that this is not the time to try to impress people with how good a sport you are - you're just going to delay getting the help you really need.

Tips on where to start -

- Unsubscribe from email newsletters and campaigns. Go through your inbox and unsubscribe from any newsletters you're not absolutely in love with.

Keep your calendar clear as possible - your closest friends will understand your need for flexibility. It can be so stressful wondering if we're going to have enough energy to go to an event - just reply to invitees that you'll have to make the decision on the day.

Get rid of any clothes or shoes you haven't worn for a year - or anything that doesn't fit anymore. It's nice to have "goal clothes" but really - they're just holding you back from being who you are. Clearing out your closet and being able to clearly see all your favorites makes it easier to feel good about what you're wearing every day.

-Throw out any kitchen appliances you hardly ever use - we inherited a waffle iron and vegetable steamer that we never ever used, and those things can add up really fast and take up a lot of space. Honor the stuff you use daily!

- Donate books and videos that have just been sitting on the shelf - obviously keep the treasures you truly love, but if it's just "eh" it's not adding any value to your life by having it there.

Granted - I acknowledge just DOING these tasks take energy. Take it one bite at a time, when it feels right.  Set the timer for 5 or 10 minutes and then stop. At least it will get the intention rolling.

It's easy to hear someone tell you to simplify your life - you're probably imagining all the ways you can't - focus on the ones you can. Focus is a key aspect of simplifying. It means paying attention to what you DO have - living in simplicity is a life in mindfulness.

Use the wayfinding techniques to feel for you what would be a great area of your life to simplify - where do you need to lighten your load? Listen for your answer.
If you don't love the shit out of something around you - get rid of it (you'll find that you love the shit out of a lot more stuff than you might have thought - and maybe ask yourself why the fuck you kept something else around for so long).

Moving from the USA to the UK was a perfect life lesson in less - less convenience, less consumption, less busyness, less to achieve, less to prove - but all in the best ways.

Simplicity doesn't mean depriving yourself.  I finally live in a flat with a dishwasher after 4 years of hand-washing dishes - and having the dishwasher has increased simplicity. However, hanging on to old business and formal clothes that I really can never wear were holding me back into living into my life now.

When you are ill, you have the largest burden - being ill is just the first one. On top of that you have to carefully manage all your resources - your time, your physical energy, your limited money (I've lost hundreds of thousands in lost potential income), your food, your caffeine, your emotional energy, your sleep, your appointments - The outside world may even put the expectation on you that if you are sick you have to be even MORE perfect in order to prove that you have the WILL to cure yourself. (Breathe in Peace. Breathe out FUCK THAT SHIT ).

My way of dealing with these challenges has been to simplify in every way possible, and that really includes having gratitude for what I have, the focus to change what I can change, and the patience to hold on and wait for the things I can't change yet.

The number one thing to always consider - What do I need right now?

Simplify. This is the time to do it. Life finds a way to busy and clutter itself without much help.

The Maharishi said:
Keep your desire turning back within and be patient.
Allow the fulfillment to come to you,
gently resisting the temptation to chase your dreams into the world.
Pursue them in your heart until they disappear into the self, and leave them there.

It may take a little self-discipline, but be simple, be kind.
Attend to your inner health and happiness.
Happiness radiates like the fragrance from a flower and draws all good things toward you.

Allow your love to nourish yourself as well as others. Do not strain after the needs of life - it is sufficient to be quietly alert and aware of them. In this way life proceeds more naturally and effortlessly. Life is here to enjoy.

Check out The Story of Stuff (or watch the 20 min intro film here)
Check out Minimalism - a documentary on Netlflix (critical cap - Minimalism is great for the upper middle class but there are some good tips in this movie too).

If you found this helpful please help me raise money for The OHC to bring integrative health care to people going through chronic illness.
In the UK Text SOFA68 to 70070 donate £2 from your mobile

Go to Day 1 for the Table of Contents of the Sofa Heroes Challenge

Saturday, July 29, 2017

Day 24 Tips and Tricks for Sofa Heroes: Juicing & Shaking

The Nutrition/Functional Medicine Department of The Optimum Health Clinic helped me learn so much about a healthy diet, taught me all about protein shakes and juicing to boost my veggie intake!  Click on the photo to donate to The OHC through my JustGiving Campaign so more people have access to integrative treatment.
Hi Everyone!
Every integrated approach to healing the body - whether it's assistance for healing during MS or Cancer, or ME/CFS, every lifestyle approach includes adding more fresh plant food to your diet - particularly veggies - some say they manage their severe neurological relapses in MS by getting 20 servings of veggies a day!  The OHC recommends aiming for 8 servings of veggies a day, and a few of fruit - depending on your sugar tolerance.  It's easier to focus on fruit because of its sweetness, but really it's better to focus on veggies and add just a little fruit for flavor as blood sugar levels can vary a lot with our energy dysfunctions.

Trying to get that many veggies a day by eating raw salads can be REALLY difficult - so Juicing and Shakes can be an awesome way of getting your veggie count up fast.  How to know whether to juice or shake?

Shakes will use a liquid base, and you add protein powder to boost your protein intake (See my post on Protein) - A shake can also work as a great breakfast, quick/light meal, or afternoon snack.

My usual is spinach with a few frozen blueberries and a couple slices frozen banana.

bases can be any kind of alternative milk (dairy is usually a problem for people with already compromised immune systems) coconut milk, almond drink, oat drink, coconut water, kombucha or even herbal teas (cold, protein powders usually break down in hot drinks).  Avoid any of these bases with added sugars - always choose the no sugar added option.

Then you can add your greens - kale, spinach rocket, cucumber, avocado - softer greens will work in a shake with a handblender.

For protein - add nuts, seeds, yogurt and/or your protein powder or even nut butters too.

Last you can add a flavor or fruit for a little sweetness - shaking fruit rather than juicing is preferable as you will still get the fibre content from the fruit flesh and skin.  Use soft fruits like frozen berries, ripe pears or peaches to blend easily. Frozen fruits add extra -shakey- factor. Add cinnamon, ginger, coriander or mint for bonus immune boosting effects. Bananas don't juice very well but work well in shakes - stick to low amounts though, adding half a banana should be plenty to add taste without boosting blood sugar levels. Cinnamon is a great balancer for blood sugar levels too.

The benefits of shakes are adding fibre and protein that you can lose out in juicing - and buying a hand blender can usually range between £20-£50, versus the +- £200 cost of buying a juicer.

Juicing, however - gets you tons of veggie power in one glass. Juice the veggies that don't blend well - that have heartier fibre or tough skins.  Again - do limit your fruit, but you can use harder fruit like apples and cucumber offers better through juicing.

Celery, cucumber, lemon, ginger, turmeric (anti-inflammatory root), carrots, beets (watch the blood sugar indicators on sweeter veggies) - Lemon and ginger are strong flavors that can usually mask the veggies you have a harder time getting through chewing or blending.  I like to throw in all the kale I have left over! So if you can't bear the taste or chewiness of kale, rocket or leafy greens might be better to juice them with celery, lemon and ginger.  This will also be a great alkalising boost before a meal or first thing in the morning. Plus you can keep extra juice in jars and enjoy for 1-2 days.
If anyone has tips on keeping turmeric stains off everything let me know :D

You can find protein shake and juicing recipes on my healthy food pinterest board :)
Share your favorite shakes or juices in the comments! Also let us know if you have a blender or juicer that you absolutely love! I'll be upgrading soon :D

If you found this post helpful, please consider donating to my JustGiving Page - 30 Days of Tips and Tricks for Sofa Heroes - for The OHC research on Integrative Medicine for helping more people with ME/CFS and Fibromyalgia.

See Day 1 for a full table of contents

Friday, July 28, 2017

Day 23 Tips and Tricks for Sofa Heroes: Yoga When You're Sick

Click Here to donate to my fundraising page for The Optimum Health Clinic Foundation
Hi Everybody!
When you have ME you're sick all the time. The easiest way to describe it to people is that I got mono (mononucleosis/glandular fever) and never got over it.

So today I'm offering some special practices for when you're unwell - which I know is always - but these are especially good if you've been bogged down with a bug or a flare up and you're all achy from being scrunched up in bed.

In my yoga practice today I was wrung out like a wet washcloth - every little twist and stretch made me release fresh tears - of frustration, sadness, mourning, loneliness - Yoga has that power, to unleash feelings you didn't even know were there. I did a gentle spinal twist and could feel the fascia in my rib cage stretch and release and I just cried - not out of physical pain, the discomfort was relieved with the stretch, but of an emotional pain that seemed to find release in the movement.  It was almost as if my physical pain was saying "you see me, thanks for noticing me, I have a lot of mourning to do".

If anything like this comes up for you while you're doing yoga, it's completely normal.  When I first started yoga I would be very focused on doing the right poses - until we spend 10 minutes at the end in savasana - and I could no longer hold back tears.  These tears don't necessarily have stories, they just need to be felt and moved through.

Snuggle up in your breathable flexible jammies, grab a pillow and blanket and have a cup of tea near by and make friends with your body and yoga mat today.  If you feel any emotions just let them come, if you don't feel anything at all that's fine too.

If either of these practices is too strong for you- just sit or lay in your favorite pose through the postures you think you should skip. Simply showing up and giving it a go is enough.

Let me know how you get on.

Happy Yoga Friyay everyone <3

20 minute practice - Yoga For When You Are Sick with Adriene

30 minute practice - Yoga for Healing and Meditation with Adriene

If you found this post helpful - please consider helping me raise funds for The Optimum Health Clinic Foundation - doing research on how its integrative methods can help ease the suffering of people with ME/CFS and Fibromyalgia.

Go to Day 1 for a full Table of Contents

Thursday, July 27, 2017

Day 22 Tips and Tricks for Sofa Heroes: Advocacy and Support

Reuters photo from a #MillionsMissing Protest for ME/CFS Awareness
Hi Everyone!
Following up on both research and films on ME/CFS I'm here to share a few advocacy groups set up for fundraising and awareness about the illness.

It may seem strange that while I'm fundraising for The Optimum Health Clinic I'm also sharing information about other groups - but in my mind we're all in this together and a rising tide floats all boats. It's important for us as spoonies to have as much information we have about what's going on in the world to solve this horrendous illness.

The biggest hurdle for ME/CFS right now is the misunderstanding of the illness, and the stigmas that keep the illness so "invisible".  These advocacy groups try to bring visibility to an illness that keeps people indoors, in bed, in the dark, and unable to go out into the world to show people just how sick we are - even when we can go out, we look mostly normal.

ME/CFS is so serious an illness it has been called the "new polio", a cousin to multiple-sclerosis. It affects multiple systems in the body and has clear neuro-immunological and endocrine clinical dysfunctions. When I first got ill, my doctor was baffled by my test results, which looked normal, despite me looking like I was experiencing late stage HIV/AIDS symptoms.

Despite the enormous financial cost to communities due to how many are too ill to work, it is incredibly difficult for people with ME/CFS to get disability support and community support for their illness because it is so misunderstood.  There aren't even very many medical professionals that consider ME/CFS (or can give any kind of treatment or authorize testing) while undergoing treatment for anything else because of how little is understood about it.  These groups are all working to improve the general understanding and research for ME/CFS.

All of these sites have excellent info about what is ME and how it impacts both patients and the communities they live in.

#MEAction leading the #MillionsMissing campaign

Action for M.E.
Invest in ME - My friend Jen is currently doing a fun #dressForME fundraiser
The Open Medicine Foundation currently doing a worldwide tour through 2017 (They've run campaigns like #UndiesOnTheOutside and #KissMEGoodbye)

If you want to join a support group or a Facebook group talking about news in research here are a few I like:

Race to Solve ME/CFS - a very well moderated group presenting the latest research and advocacy information

Invest in ME group - updates on fundraising and research

The Optimum Health Clinic Community - people using integrative techniques to ease symptoms and support in living with ME/CFS with weekly videos from the clinic on aspects of ME/CFS and the healing process

To Be a Better ME a very friendly group about patients providing other patients with support for everyday life with ME/CFS/Fibromyalgia.

I don't know much about this one, but have seen many of my fellow PWME (patients with myalgic encephalomyalitis) talk about Phoenix Rising support.

And as always, The Optimum Health Clinic (based in London but works with people all over the world) has an enormous library of resources on their website as well.

If you're enjoying these blog posts please help me raise money for The Optimum Health Clinic Foundation Thank you!
 Donate to my JustGiving Page for The OHC

Go to Day 1 for the full Table of Contents of 30 Days of Tips and Tricks for Sofa Heroes

Wednesday, July 26, 2017

Day 21 Tips and Tricks for Sofa Heroes: Films on ME/CFS

Help me raise money for The OHC - Click Here
Hi Everyone!
Today we're going to look at some media that has been made for ME/CFS. If I'm missing a good film or video here please do let me know.

Unrest (2017) - a documentary film by Jennifer Brea and her journey with ME - releasing in theaters in the USA this September and in the UK this October

Click here to see the trailer of Unrest - releasing in theaters in September and worldwide in October

Watch Jen Brea's TED Talk on her journey with ME and the misapplication of "hysteria" on people with unknown illnesses.

What About ME (2017) on Amazon Prime - "What About ME?" is an expose inside the dramatic search for a cure for Myalgic Encephalopathy (ME), also known as Chronic Fatigue Syndrome (CFS). 17 million people around the world suffer from ME/CFS which, unbelievably, has until now, been treated as a mystery illness or even as a psychological disorder by the medical community.

Forgotten Plague: M.E. and the Future of Medicine (2015) - a full length documentary about the medical system's failure in addressing complex disease.

Voices from the Shadows (2014) - a 30 min documentary screened at the Stanford ME/CFS Symposium, or 1 hour film on Vimeo - stories of the difficult lives of people with ME/CFS

Here's a TED Talk from 2013 on Invisible Illnesses

It looks like in 2010 there was a 2-part documentary called "All About ME" by McCarrick Films - but the links to all of it have been removed.

I Remember ME (2000) a film about the 1984 Incline Village Outbreak and other clusters of ME/CFS outbreaks - trying to figure out some patterns or information as to the cause of ME/CFS

Make sure to also check out all the videos from The Optimum Health Clinic's YouTube Channel as well, and their 1 hour documentary, Secrets to Recovery (2017) featuring recovery stories based on their clinic's work.

If you're enjoying these blog posts please help me raise money for The Optimum Health Clinic Foundation Thank you!

Go to Day 1 for the full Table of Contents of 30 Days of Tips and Tricks for Sofa Heroes

Tuesday, July 25, 2017

Day 20 Tips and Tricks for Sofa Heroes: Slow Down

Chillin' out - am i doin' it rite? > still learning < Help the OHC here!
Hi Everyone!
Today I'd like to experiment with slowing down - something that sounds really simple, but in practice can be a real challenge.

We live in a super-speed world - constant notifications, speedy digitalization, and demands to fit more into our day - the exact opposite of what a sick person needs to heal.

I wonder how fast I could heal if I was chill like this guy - DOH! I did it again.. be OK with slooowwww
I want you to see if you can mindfully do a task today in slow motion - taking a shower, or getting ready for bed, brushing your hair or practicing yoga - doing things in slow motion increases your focus (and quiets the noise) - and allows you to witness just how fast you've been trying to rush through things.

See if you can catch yourself when you have a busy mind or you find yourself rushing around, and just say to yourself "slow down".

People with ME/CFS have over-active nervous systems, with theories going so far as to say that ME/CFS may be caused by the autonomic nervous system being stuck in the stress response, or "fight or flight" with disruptions in the amygdala. It's important to do what we can to try to be mindful about slowing down when we can.

This is the concept behind self-healing with qigong  - giving mental clarity and focus, and calming the body with gentle, slow attentive moving.  The philosophy behind it also goes into spiritual aspects, but if that doesn't sit right with you it's not a requirement for practice.

Here's short 12 minute practice that I like to do from time to time (if standing is too hard, I think you can also mimic the movements seated as well).

Another way I have found to slow down is to make myself comfy and tune into ASMR videos (What is ASMR?).  This won't be for everyone, but ASMR is a technique used to calm and relax - the sensation is likened to that of having your hair played with or someone smoothing your back - but all you need is to listen. These videos are recorded with binaural microphones so they're great with headphones. There are also sometimes visual ASMR "triggers" like watching someone use a brush or paint, or watching kinetic sand fall apart.  This one combines all these with the "slow down" of daily task so see if it relaxes you!

And if you want to go with yoga, try Slow Down Yoga with Graham Burns on Conscious Life (Conscious Life is the company I have the pleasure of working for :D).
Here's a clip on YouTube of the practice if you want to look into more.

Let me know your favorite slow-down-technique in the comments!

I hope you feel better, see you tomorrow!

Go to Day 1 for the full Table of Contents of 30 days of Tips and Tricks for Sofa Heroes

I'm doing 30 days of Tips and Tricks for Sofa Heroes to raise money for The Optimum Health Clinic Foundation. Click Here to help my fundraiser on Just Giving!

Monday, July 24, 2017

Day 19 Tips and Tricks for Sofa Heroes: Non-Toxic Home

Rounding the final bend - fundraising for The OHC Foundation
Hi Everyone!
It's day 19 and I want to offer some options for non-toxic home care.

If you have any kind of compromised immune system or multiple chemical sensitivities (very common in chronic or severe illness) it's important not to overload the system with more than it needs to deal with.  Home cleaning products can be very harsh and full of chemicals that just make it harder for our body to heal if we're breathing in or absorbing more difficult ingredients to filter out.

I noticed huge neurological symptoms especially after using anything with bleach - and now that I've switched most everything out cleaning is a lot less risky business for me!

Around the house

One of the toughest things to remove and replace are all our products that include fragrance ingredients (parfum, perfume, aroma). This is important to do because this ingredient is one of the most un-regulated ingredients out there - the word "fragrance" is a loophole to protect companies' "trade secrets".

I like using Beeswax candles and have tried a couple of essential oil options.  Beeswax candles can eliminate odors without fragrance, are long burning, and don't go bad.

I have a humidifying diffuser for essential oils but am not over the moon about it yet.  Double check the ingredients on your essential oil products as well. I'd love to hear your favorite options.

I have only just begun dabbling in the world of essential oils - so I don't have brand recommendations yet - if you have any counter knowledge about them being a safer "fragrance", or have good recommendations, do let me know in the comments.

Dr. Bronner's castile soap can be used for all kinds of things - laundry, surface cleaning, dishes - check out the wide range of their awesome products. 18-in-One! I get mine through BigGreenSmile in the UK, they sell it also at Whole Foods.

I'm a huge fan of the "magic eraser" product that just uses water and it's special texture to scrub out marks and messes without abrasion. There's a lot of different brands of this type of sponge and all the ones I've tried have been great. Flash, JML, and Mr. Clean all have their own versions.


Another dish soap I like as well (I hand-washed dishes for the last 4 years!) Marcel's Green Soap, and now for my new dishwasher (omygawd so thankful for a dishwasher) Bio-D Dishwasher Powder and the rinse aid - I'm still playing around with this as we have very hard water and I think it needs a little help, but it works just fine.


Speaking of hard water, I found a little Ecozone Magnoball which apparently attracts the limescale - I use it in the dishwasher and the washing machine to assist with the hard water.

I've replaced my laundry detergent with Soap Nuts (I've also used the liquid version, Soap Flakes, which works just as well), which is actually also a lot cheaper than detergent. You don't get the fragrance with it, but there are some tips on using essential oils in your dryer (or spritz on when hanging on the line).  If you have hard water (like most of the UK!) you can add white wine vinegar to the detergent or rinse box - and the scent of vinegar is washed out.

Skip fabric softener and dryer sheets - advice from Scientific American (critical caps on - just do your best).

In the dryer I use these dryer cubes instead of dryer sheets to minimize static and wrinkles and even decrease drying time!

Replace plastic tupperware with glass options - they'll last longer and are usually microwave and dishwasher safe.

Try replacing plastic baggies and cellophane or foil with reusable beeswax food wraps - I haven't had a chance to try this yet but look forward to - have any of you tried them? What do you think?
In the UK shop The Wise House
Made in the UK Buzzcloth

Vinegar and baking soda (washing soda - sodium bicarbonate) have many many home and body uses!

Click here for the many cleaning vinegar
Click here for the many cleaning uses of baking soda

If you're in the USA - my sister enjoys the products from H2O at Home - and has home cleaning products that just take water as well as essential oil home fragrance options. It can be a bit pricey and you need to find a sales rep to buy, but might be worth checking out.

And FINALLY I want to offer the advice - Don't be afraid to hire cleaners - even maybe for a couple hours once a month - it can be a godsend to finally admit you are worth getting help.  You don't have to smell the fumes or exert the energy that you don't have.

Ask for help - that's a great piece of advice (and a hard practice to work through!) for any spoonie. My boyfriend and I do not have a lot of extra resources going around - money is tight for lots of spoonies because we usually can't work a regular job - but if you can mindfully make the choice to spend a few dollars instead of the energy, I think it's completely worth it.


(also - let go of the need for everything to be clean all the time :D)

Let me know your favorite household tips in the comments!

I'm doing 30 days of Tips and Tricks for Sofa Heroes to raise money for The Optimum Health Clinic Foundation. Click Here to help my fundraiser on Just Giving!

Go to Day 1 for the full table of contents

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 PACE Trial/ 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.

Update July 31 2017 - Stanford research group study showing chronic inflammation disorder based on dozens of cytokine variations between healthy controls and severely ill people with ME/CFS.

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