Friday, August 4, 2017

Day 30 Tips and Tricks for Sofa Heroes: Mocktails

Thank you for supporting me on this journey! Click to contribute to my cause.

 It's day 30! Time to celebrate!!
I can't believe I didn't miss a SINGLE day of research and blogging on little tidbits and tricks for people with ME/CFS.
Through the last 11 years I have learned a LOT about living with ME, and I'm really pleased I decided to do this project to put down on "paper" some of those things I've learned. Surprisingly - I still have more blog posts in my head.... which makes me realize...


There is so much information out there, and so many people trying to tell you the right things to do. Be gentle on yourself and thanks to google, you can look up a specific need you have when you need it, or revisit Day 1 of my blog for the table of contents.

Now ON TO the Celebration!!

Let's have a drink - depending on where you are and your levels of illness, if you have ME/CFS you probably can't celebrate with alcohol so here are some sugar free, alcohol free Mocktail recipes so you can also enjoy and celebrate with a fancy fun drink in your hand.

Click here for 4 Recipes by I Quit Sugar
-Blueberry Mojito
-Peachy Clean Mocktail
-Zingy Passionfruit Shaker
-Virgin Ginger Mimosa

For even simpler celebratory drinks - get out the sparkling water, soda water, tonic water, or kombucha, and add a sprig of mint and a few seasonal berries.

To your health and mine.

Thanks for joining me on this journey!
Click here to donate to my JustGiving campaign to bring support to more people with ME/CFS through The Optimum Health Clinic Foundation or text SOFA68 £5 to 70070 from your UK Mobile

Go to Day 1 for the full Table of Contents

Thursday, August 3, 2017

Day 29 Tips and Tricks for Sofa Heroes: Celebs Like Us

Every person counts - Donate today to help bring treatment to chronically ill patients.
They're just like us!

Today I want to shed some light on some famous faces that share the struggle of living with chronic invisible illness. These fellow spoonies are important because they have the opportunity to be advocates and spokespeople for those of us who don't have a platform. I also think it's fascinating and important because celebs often have the resources to try treatments and therapies that are too expensive for most of us, or that we don't have access to, so they in some terms are on the edge of the frontier with more experimental healing - remember critical caps on (there are unfortunately plenty of famous people taking advantage of the world of the chronically ill by selling expensive supplements and lifestyle treatments as cures) - which could bring to light treatments that might work to help symptoms or resolve disease.

Another important benefit to seeing celebs with illnesses is it can make us feel less alone - and if they're particularly good advocates, they give us hope.

Laura Hillenbrand - The author of Seabiscuit and Unbroken, severely disabled by ME/CFS, she wrote one of the most popular articles in The New Yorker - A Sudden Illness about her experience with the illness.  She dedicated Unbroken, "For the wounded and the lost."

Cher - Has previously called her illness "Epstein Barr Virus" on the Ellen Show, but has recently referred to it as ME/CFS. She's had trouble with her fatigue and post exertion malaise since the late 80's. Cancelled shows due to her illness have been big in the tabloids, but always refer to a "mystery virus". “My experience was that it was really a physical illness — but it does make you depressed as well ... Boy, it was devastating for me.”

Actor Jon Campling  (Harry Potter Death-eater) is a huge advocate for ME Research through InvestInMe on behalf of his wife with ME/CFS.

East Enders / Love Actually's Martine McCutcheon opened up a few years ago about her decade long battle with ME/CFS, and an additional video here about what she's been doing to try to recover.

Royal Harpist Claire Jones recovered from ME/CFS and received treatment from The Optimum Health Clinic and shares her story here.

American soccer star Michelle Akers suffered with ME/CFS as she was in the height of her pro-athlete career -FourFour Two wrote in 2016The greatest women's player in history -- she's No. 1 on our list of Americans -- continued to star for the U.S. women through 2000, despite battling chronic-fatigue syndrome. Later that year, she was named Women's Player of the Century by FIFA. The National Soccer Hall-of-Famer today runs Michelle Akers Horse Rescue & Outreach, Inc., a Georgia nonprofit dedicated to saving horses.

Lady Gaga recently opened up about her chronic pain, and while the diagnosis is vague update she has confirmed she has fibromyalgia -  her recent posts have been in support of everyone struggling with chronic conditions.  Watch Gaga: Five Foot Two on Netflix, which peaks into her daily life including struggling with intense body pain.

Morgan Freeman has Fibromyalgia as well as Sinead O'Conner and comedian Janeane Garofalo.

I'm including Chronic Lyme Disease diagnosis' here because many people with Lyme are often diagnosed with ME/CFS first  - the symptoms, lifestyles, and healing protocols are generally the same or very similar.

Alec Baldwin, George W. Bush, Ben Stiller, Amy Tan and Richard Gere are listed here.

Shania Twain recently opened up about her 14 year battle with Lyme Disease Here

Avril Lavigne shares her frustration with an initial diagnosis of Chronic Fatigue Syndrome and then Lyme Diagnosis here.

I hope this has helped - the visibility and knowledge of these struggles will only help to move research and advocacy forward.

Other Spoonies Like Us
Lena Dunham's writing on her struggle with Endometriosis is extremely relatable.
Selena Gomez's diagnosis with Lupus lead her on a difficult journey spoonies can relate to.
Modern Family's Sarah Hyland has found her strength in confronting people who judge her looks based on the symptoms and side effects she has from multiple illnesses related to kidney diseases.
Kim Kardashian has been open about her Psoriasis and how she's learned to live with it.

See you for our LAST DAY tomorrow!

See Day 1 for the full Table of Contents

If you're enjoying these blog posts please consider making a donation to The Optimum Health Clinic Foundation Thank you!
UK Mobiles can text SOFA68 £5 to 70070

Wednesday, August 2, 2017

Day 28 Tips and Tricks for Sofa Heroes: Green Drinks

Give more sofa heroes access to functional medicine - Donate to my JustGiving page here!UK Mobile users can text "SOFA68 £5" to 70070
Hi Everyone!
Today we're talking about Green Drinks! What?! Didn't we already talk about Juicing and Shaking? Yes, but finding a green powder drink is a very simple way to get your superfood (and often probiotics) without all the equipment and fresh produce - when you're between shopping trips or just too tired to get out all your tools.

For my very tired days a green drink is a better alternative for me than juicing or shaking - all I have to do is put a couple scoops in and mix with water (or if I'm shaking anyway, like in the photo above, I can add the green powder to my shake).

Green drinks come in a huge variety - but in general offer a compact and simple way to get your vitamins and minerals, antioxidants, protein, fibre, and iron - get the superfoods and the benefits of leafy greens in a quick swig.

Most of them also have benefits that help with digestion and craving/appetite control, and they can help with your energy regulation as they don't have sugar so won't cause a crash.  Green powders with probiotics are a great alternative to yogurt if you're dairy free.

Click here for  a good review of many different varieties of green powders that just need liquid added.

Here's some I've tried
Pukka Juicy Wheat Grass - Chlorophyll anti-oxidants and plant enzymes
The Pukka Juicy Wheat Grass I think is a good quick go to for a green fresher-upper - a great way to jump start your system the day after you may have gone off your healthy eating routine...

What are the benefits of Chlorophyll for people? - apparently great for detoxing, digestion, anti-candida, and reducing redness and inflammation

What are antioxidants? - Antioxidants can help with reducing oxidative stress and deterioration of healthy cells - important when you need your immune system doing its best.

Naturya Organic Wheatgrass - pretty much the same as the Pukka blend.

Naturya Organic Wheatgrass - full of iron, fibre and protein - another great way to start the day.

Amazing Grass Green Superfood Original - includes lots of additional green ingredients like : broccoli, spinach, barley grass, spirulina, chlorella and more.

ProGreens is the most expensive one I've tried but also the highest quality (less chalky taste at the end) - and also includes probiotics, so if you've struggled with other probiotic options this could be your ticket. It's sold in the USA and the UK.

What's your favorite quick-mix green powder or superfood drink?

Feel better - see you tomorrow.

If you're enjoying these blog posts please consider making a donation to The Optimum Health Clinic Foundation Thank you!
UK Mobiles can text SOFA68 £5 to 70070

Go back to Day 1 for the full Table of Contents

Tuesday, August 1, 2017

Day 27 Tips and Tricks for Sofa Heroes: Spoonies

Help spoonies have access to functional medicine by supporting the study by the OHC

Hi Everyone -
If you're new to the chronic illness world you've probably heard me use the term "spoonies" a lot and wonder what it means!

I mentioned it briefly in my first post but I want to dedicate this whole post to Spoonies as having this little theory in my life has allowed me to connect and feel supported by so many people with different chronic illnesses and conditions.

Read the full   Original Spoon Theory by Christine Miserandino here.

The Spoon Theory describes how units of energy are represented by spoons, and how people living with chronic illness have a lot less spoons to spend on a day than a healthy person.  Spoonies understand what other spoonies are going through, and can relate to how much more difficult it is to do normal day-to-day activities.  The Spoon Theory can help friends and families understand when we're running out of spoons, or just how precious each action we take is.

An example of spoon use/cost

One example of spoon use/cost
I relate the spoon theory to Link from The Legend of Zelda and his health bank represented by hearts on the screen. A healthy person has a full 20 hearts filled to the brim, which by the end of a very very strenuous day will still have 10 full hearts where as a Spoonie starts the day with barely 3 filled hearts and lives most of their lives in the blinky danger-zone (or most of their life balancing daily tasks carefully to avoid the blinky danger-zone).

As a spoonie it's possible your energy is very hard to predict, so your spoons can change from day to day, but getting a good idea of your spoon count and costs can help you find a baseline and "Bounce the Boundaries" to work safely inside your energy envelope without causing a crash.

More from the Spoonies Community

See Art by a Spoonie for Spoonies
Stacey and Claire Spoonie Talk Facebook Page
Counting My Spoons Spoonie Blogger

If you found this blog helpful please help me raise money for The Optimum Health Clinic which is working to complete a study proving the benefits of their functional medicine protocol for people with ME/CFS so more people have access to help.

From a UK mobile you can text SOFA68 £5 to 70070

Go to Day 1 for the full table of contents

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