Friday, August 4, 2017

Day 30 Tips and Tricks for Sofa Heroes: Mocktails

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 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...

IT's NO WONDER WE GET OVERWHELMED

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.

Cheers!
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, her recent posts have been in support of everyone struggling with chronic conditions.

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).

video

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