Hello again!

Being grateful to be back!

Hello lovely. It’s been a long time since I last wrote a blog post. Well, it’s been almost three months, but it feels a lot longer.

After my one year blog-aversary post, I was feeling pretty overwhelmed and thought I’d take a break for a week or two. But then I had a big CFS relapse, which turned out to be the biggest crash I’ve had in a long time.

On top of feeling utterly wiped out and physically like I was back at square one, I was feeling disheartened, frustrated and deeply worried that I wasn’t making any progress in my recovery.

So I took the time I needed to rest, recuperate and recharge. And I took the time to sit with my more unhelpful feelings and gently work through them, trusting that when the time was right I would feel brighter and more positive again.

And I’m getting there. Slowly but surely. Turtle Power Style 🐢

Even though I’ve still been writing in my daily gratitude journal, I’ve recently found myself thinking how I’d like to write a blog post about something that’s made me happy that day. But I couldn’t because I hadn’t written that first post back yet.

I’ve been apprehensive about writing this first post because I felt it had to be something special, really special.

So I put it off for a day, and then another, and then another. And here we are.

Isn’t it crazy the amount of pressure we can put on ourselves sometimes?

But today, about half an hour ago, I suddenly realised that my first post in 3 months doesn’t have to be anything special at all. It can be just like all the others: just a little blog post about a little something that’s made me happy today.

And actually, I think that’s pretty special enough.

So here I am, just me, continuing to write about the everyday little things that make me happy. And today I’m happy that I’ve realised this!

Phew, what a relief.

And hooray! I’ve just taken that oh so difficult first step, which is always the hardest isn’t it. And it feels good. It feels really good 😊

☆♡☆

Happy Blog-aversary

Being grateful for one year of maketodayhappy.co.uk:

[WARNING: this extra long blog post contains a LOT of gushing 🙂 ]

Yay! It’s one year today that I posted my first blog post on maketodayhappy.

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I started my life as a blogger sometime last July and have been meaning to check the exact date for a few weeks now. And this morning I woke up with a strong urge to investigate and discovered it was today!

Hooray!! Love how that happens.

I’m sooooooo thankful I decided to write this blog – it has seriously done me the world of good in so many ways.

I set out to see if I could stop my gradual slide into the deep dark cess pit of self-pity and depression as I was plunging further into the complicated and misunderstood world of Chronic Fatigue Syndrome.

And I knew I had to find my happy again.

And fast!

I thought it might be quite a challenging task when I spend most days lying in bed too fatigued to move, too brain fogged to think straight, and too fed up to care!

But I had to try, and I’m so glad I did.

Rather than write about the negative issues my health condition brings, I wanted my blog to be a happy positive place to be – for me and for anyone visiting. So I vowed to focus on finding the happy in the everyday little things, through mindfulness, gratitude and kindness.

And to kick it off, I embarked on my 100 Days of Happy project.

I soon realised there are so many things to be happy about:

☆ Watching the wind rustle through the grand sycamore tree outside my bedroom window, listening to the birds sing their happy tunes, witnessing a magnificent sunrise or sunset. How can you not be happy when you focus on the magnificence of Mother Nature?

☆ Enjoying every single moment I get to spend with my young nephews, even though spending more than half an hour at a time with either – or both of them – wipes me out. To be able to share in their joy and wonder of life, to play mindfully with them, getting lost in their world. I’ve discovered how children are such wonderful teachers of how to live in the present moment.

☆ Focusing on all the little things that I can do rather than the things I cannot. Instead of being grumpy that I can no longer go on a weekend hike, I’m grateful that I can take short soul strolls around my neighbourhood, make friends with local dogs, admire the flowers and the scentalicious rose garden, listen to the babbling brook.

☆ I’m grateful to have found my tribe on Happier. Making like-minded friends from all around the world who always brighten my day, provide unlimited support, and inspire me to keep looking for the happy.

☆ And I’m deeply grateful for the love and support of my family and friends who have continued to be there for me, even if my condition isn’t always easy to understand – which I know can be crazily difficult and I don’t always understand it myself! My mum has been such a superstar, she is my rock and my heart is so full of gratitude for her unwavering love, care and support.

I’m so thankful that I have so much to be grateful for!

I’ve discovered how life-changing it can be to open your eyes to everything we have to be grateful for, even with a debilitating chronic health condition.

In my experience over this past year, I’ve discovered that being mindful and being grateful go hand-in-hand, they are such a powerful duo in our quest for happiness.

And kindness makes it a powerful trio.

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When I decided to start carrying out small acts of kindness, I had no idea what a huge part of my recovery journey it would become:

♡ I love hiding kindness cards around my community for people to come across. I love putting together little goody bags, hoping they bring joy to the recipients. And I love sharing inspirational kindness stories and quotes on my Facebook page ‘spreading little kindness’.

♡ I never imagined how doing one small act of kindness could have such a positive impact on another human being. While doing most of them anonymously, it’s always such a treat to hear from people who’ve found one of my Kindness Cards or Kindness Goody Bags; it really warms my heart and inspires me to keep going (for one emotional example, check out the comment in this blog post).

♡ I never imagined how passionate I would become about spreading kindness, how it has become my mission, and how the local newspaper and radio station would pick up on this mission.

♡ And I never imagined how much of a positive effect doing acts of kindness would have on me. My intention has always been to try and make other people smile, and I honestly didn’t expect to feel as happy as I do when I’m planning and carrying out kindness acts. It’s an unexpected bonus and the old adage that the giver benefits as much as the receiver is very much true in my case.

A lovely friend wisely noted that I’m healing through kindness. And I couldn’t agree more.

And to dear lovely YOU. Thank you so much for visiting and reading my blog. And extra big thanks for your comments, likes and shares. Whether this is your first visit or you’ve come along on this journey with me, I deeply appreciate you.

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It’s always lovely to see you and knowing you’re out there helps to keep me going, especially on the darker days; it’s not all sunshine and sparkles, but it’s all part of life and for that I have learnt to be grateful.

So, here I am, one year on.

I’m truly more mindful, more grateful and more passionate about kindness. I’m not sure what lies ahead, but for now I think I’ll keep on making today happy.

Much love to you,
A happier Helen Xxx

ps I hope you enjoy reading about my journey to make today happy, and if you’ve been inspired in any way to make your today happy too, I’d love to hear from you (in the comments below).

 

Oxygen Energy Therapy

Being ever so grateful for breathing in a little more oxygenated air:

A little while ago a friend asked if I’d like to be a case study for a natural product which is reportedly helping people with a number of conditions including Chronic Fatigue Syndrome.

Of course, I jumped at the chance.

Expecting a new batch of supplements, I was quite surprised to find a small electronic device delivered to my door a few days later.

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And with SoeMac being “the world’s first and only home use Singlet Oxygen Energy therapy device”, I was instantly intrigued and rather excited.

All I had to do was plug it in, switch it on just before I go to sleep, and let it work its magic.

This clever little device – around the size of an external hard drive – works by producing energised oxygen and gently blows it into the air, which you breathe in while you sleep.

It reminded me of how I experienced Hyperbaric Oxygen Therapy many years ago, which involved climbing into a chamber and breathing in pure oxygen at an higher than atmospheric pressure.

I remember feeling wonderfully rested, restored and refreshed afterwards and was keen to go back for more sessions, but the high price tag meant that I couldn’t.

So I couldn’t wait to try my very own oxygen therapy machine.

Being lightweight and slender, it easily fits onto my nightstand. It’s recommended that for optimal benefits, to sit the device at a higher level than your bed, so I’ve created a little tower by placing the box it came in on top of my alarm clock.

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Et voila!

Being such a light sleeper, and even more so with my CFS-induced heightened sensitivity to light and noise, I was initially concerned the red light and soft whirring noise would keep me awake. But I simply prop a pillow to block out the light and I’ve got used to the sound – but if it does bother me, I simply pop my earplugs in!

 

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I’ve been using my SoeMac for almost four months now and I have to say I’m pretty impressed with the subtle changes I’m experiencing: I’m feeling a little more rested, restored and refreshed.

I feel my quality of sleep has improved; I’m sleeping deeper than before. One of the common symptoms of CFS is awakening from sleep still feeling tired and unrefreshed, no matter how many hours you’ve been asleep.

But now, I often wake up feeling like I’ve had a proper night’s sleep. I feel much better for it and find I have a little more energy for the day ahead.

Of course, I still have the occasional crappy night’s sleep, but my sleep is restful more often than not.

I also feel that my recovery time after a crash or wipe out is lessening. As this means hours or days of complete bedrest, bouncing back even just a little bit quicker is a big deal.

And for that I am very grateful.

As I’m discovering through my own personal recovery journey from CFS, the road to recovery is long and winding, and I’ve still a long way to go. But any improvement in my condition, be it the teensiest weeniest baby step forward, is very welcome and pretty exciting.

And I’m pretty excited.

I have to say, that there are a few other significant factors which I feel are also contributing to my subtle health improvements:

☆ I have recently started private nutritional sessions with the Optimum Health Clinic and a big part of this is being more careful with my diet: I’ve been avoiding sugar, dairy and wheat for over two months now and have increased my protein and ‘good’ fats intake, and am feeling sooooo much better for it
☆ Following recent test results and my practitioner’s recommendations, I have changed my supplements and have added a couple of CFS-related supplements into the mix
☆ And the arrival of lighter-for-longer, warmer days. I am such a sunshine girl and my mood always lifts during the summery months of the year

So while I can’t give SoeMac full credit for my subtle health improvements, I am confident it is having a positive impact and it has become an essential tool in my healing recovery kit.

☆♡☆

The Poetry Takeaway

Being grateful for the gift of a poem:

To celebrate our connection with the Romantic poet Lord Byron – who’s buried in his family’s vault in our Parish Church of St Mary Magdalene – our town is hosting the Byron Busk mini festival.

With art, music and of course, poetry, I was feeling well enough to check it out and took a gentle walk down into my town centre.

I was looking forward to seeking out The Poetry Takeaway, described as a place where: “The poet chefs will write, perform and personalise a poem for you to wrap and take away for free.”

How fabulous.

After weaving through our town’s Friday market, I found ‘the world’s first purpose-built mobile poetry emporium’ already in full creative flow.

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During the short wait, I chatted with Michael Bolger, the creative brainpower behind The Poetry Takeaway. He described how the burger-turned-poetry van travels all around the country, its talented poets and performers gifting poetry at festivals and private functions.

I was soon paired with the effervescent Michelle Madsen. I didn’t know this at the time – only discovering her impressive credentials on her website afterwards – that Michelle has been performing her poetry around the UK and the world for almost a decade. She’s founder and host of London’s Hammer and Tongue which is part of the UK’s slam poetry network. Oh and she’s also published a selection of her poems in a book. I was in very safe hands 🙂

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I decided to ask her to write a poem for my lovely mum, who was at that very moment at the hospital bedside of her younger sister, who passed away only a few hours later.

I wanted it to be a gift for my mum, to bring her some comfort during this sad time, and to remind her how much she is loved and appreciated.

I was expecting to be asked a little about my mum, but not the in-depth questions about her life, loves and passions. Covering all things like her favourite colours, season, flowers, her sense of style, what makes her laugh, her music of choice, her ideal day out, and oodles more.

I have to confess the questions I most enjoyed were those that were deliciously thought-provoking on how to describe her laugh, what season she most resembles, her outlook on life, her presence.

I thoroughly enjoyed every minute of our 15-20 minutes chat, it was really wonderful to think about my mum in this way.

But I have to admit I was pretty wiped out afterwards! My CFS induced brain fog protested after so much hard thinking!!

As Michelle set to work, I was asked to return in 30 minutes so I nipped into our library. I wanted to spread a little kindness and also find a quiet corner so I could meditate and recharge a little energy.

Eager to hear the poem, I couldn’t wait to return to the creative hub.

And it definitely didn’t disappoint.

As Michelle performed her poem to me – which I really wish I’d recorded as it sounded sooooo much better when she read it out loud – I rollercoastered through emotions of delight, tears, joy, laughter, surprise, happiness and “oh no, mum’s going to kill me for telling you that” fear!

Seriously though, I absolutely love it.

This truly is the perfect poem for my lovely mum and demonstrates just how well Michelle had taken the time and the effort to get to know her through me.

And I couldn’t resist giving her a big hug as she finished.

Here’s the poem:

Happy Chrisday!

Chris, let’s make this YOUR day (as they all should be!)
And with garlands of lilacs and pinks around your neck
We’ll day trip to Whitby! And maybe Tahiti!
And write in pearls in the sand, YOU ARE LOVED!

That your kindness is spread as thick as strawberry jam
sandwiched between two freshly baked sponge cakes
Their round vanilla scent tickling bellies,
sustaining even those that can’t bite into their sweet riches

BUT FIRST! Our outfits must impress
To Debenhams – Nottingham’s magnetic fashion superstore
And from racks of lovingly stitched cotton and floaty lines
you’ll be dressed fresh as the summer breeze that you are.

Home-maker, lady magician of the kitchen,
Crafting joy from ordinary things, laughing out Mama Mia hits
Smile bigger than Ronan Keating’s bank balance
as you hide clothes pegs under fern leaves

Hucknall’s queen of generosity
Let’s make every day one for you
Best friend, best mum, best you

When I gave mum the poem,  it brought tears to her eyes too. She really loves it and continues to thank me for this beautifully unique gift of words.

Thank you so much to Michael, Michelle and all at The Poetry Takeaway – you gave us the gift of a smile during such a sad time, and for that I am eternally grateful.

☆♡☆

Now, this is not intended to spoil this lovely tribute, but I feel inspired to write a little ditty of my own (apologies if anyone from the poetry world is reading this… you might want to look away now!).

Ok, here goes…

My Ode to The Poetry Takeaway

Oh Poetry Takeaway in a lovely van
created by one very clever man
My poet was the lovely Michelle
and I instantly gelled with this effervescent belle

I wanted a poem to cheer up my mum
unlike chocolates or flowers, this gift she could hum
To make her smile whenever she felt blue
a gift that says: ”Mum, I really love you”

Michelle asked me questions about my mum
all kinds of things that made my brain go numb
Mum’s life, loves and passions, her ideal day out
she got to know her well, of that there’s no doubt

The finished poem Michelle performed out loud
I enjoyed it so much, I really was wowed
My mum loved it too, it bought tears to her eyes
this gift from The Poetry Takeaway, the perfect surprise

☆♡☆

The Happy Newspaper

Being grateful for The Happy Newspaper:

I’ve been a BIG fan of The Happy News ever since a kind person sent me a copy a few months ago.

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In the words of its wonderful creator, graphic design graduate Emily Coxhead: “This is not your typical newspaper… The Happy Newspaper celebrates all that’s good in the world; a platform to share positive news and wonderful people.”

This quarterly newspaper guarantees smile after smile, page after page. And with issue #3 just out, it’s jam packed full of brilliant, positive, uplifting stories from all across the globe.

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It also has a lovely section which celebrates Everyday Heroes – where readers can nominate a person, group or organisation who make the world a little happier and, well quite frankly, deserve a little appreciation and a whole lot of love.

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Written by Emily and a host of kind contributors, there’s oodles more content around lifestyle, showbiz, travel, food and much more. All guaranteed to make you feel happy 🙂

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And as I was flicking through the latest issue, I was surprised and excited to come across an article written about little ol’ me:

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So if you too are tired of all the negative news and want to be reminded of all that’s good in the world – of which there really is an abundance –  go and order yourself a copy at www.thehappynewspaper.com/shop.

Currently only available online, Emily’s happy to post to anywhere in the world, and fingers crossed it soon rolls out into our newsagents so everyone can enjoy a quarterly dose of Happy News.

You could also, like me, buy a few copies to give to your friends (Issue #1 is currently only £1) and help spread a little happiness.

As negativity tends to dominate our news stands, it’s utterly refreshing and uplifting to read about the good things that are happening in the world.

And The Happy News really is a big beautiful breath of fresh, happy and positive air.

☆♡☆

Being grateful for the opportunity to explore lovely Chester

When I heard I had to go to Chester for an early Monday morning legal/medico assessment, I wasn’t relishing the idea of a journey consisting of either 4 trains or a 2+ hour solo drive through Monday morning rush hour.

So I was really happy when my folks said they’ll join me and suggested we stay overnight stay to make it into a little getaway.

I have so many happys from these two days, I thought I’d write them in a gratitude list:

1. I am grateful for a positive and encouraging legal/medico assessment

2. I am grateful for my mum and dad coming with me as it was nice to have the support and spend time with them away from the normal daily routine of home

3. I am grateful for dad doing all the driving so I could conserve my energy on the way there, and rest and recharge on the way back

4. I am grateful to the hotel for moving me to a quieter room without any fuss

5. I am grateful for doing a forward roll on my deliciously comfy and humongous king-sized bed (even though it made me feel really dizzy and made my neck a little sore!)

6. I am grateful for the messages of support from dear friends and a thoughtful card from a cherished soul sister

7. I am grateful for getting a little taste of lovely Chester. As well as having to rest lots, we were able to: walk on part of the 2000 year old wall which surrounds the city boundaries; witness the jaw dropping beauty of the cathedral and ornate prettiness of the 1897 Eastgate clock; meander along the cobbled lanes seeing gorgeous Tudor buildings at every turn; stroll through the Roman Gardens and Amphitheatre; see the beauty of the raindrops on lusciously green leaves; and be by the water as we walked alongside the canal and river.

Chester

8. I am grateful for yummy, healthy meals in fab restaurants with exceptionally friendly service

9. I am grateful for finding the only cafe open after a burst water pipe stopped all running water in the city centre on Monday morning

10. I am grateful for the kindness of a fellow driver signalling that one of our tyres was near flat on the 2hr drive home

And all this is worth feeling like this…

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… for a few days. Now it’s time to rest, recuperate and recharge.

☆♡☆

Lola

Being grateful for making a new furry friend:

On a day where I’d expected to be feeling a little sad as some plans had fallen through, a little four-legged Westie appeared and turned my day around.

Lola is my Auntie and Uncle’s 2 year old fur baby, and they all paid us a surprise visit as they are currently holidaying in the nearby Derbyshire Dales.

I met Lola when she was only a few months old and she was an energetic, excitable ball of white fluff, bolting and bounding around our living room, non-stop.

She was craaaaazy!

Unfortunately, I find excessive noise and fast movement a challenge, due to the nature of the CFS, and so sadly had to spend most of that day hiding away in my bedroom.

For this visit, we were promised that Lola had calmed down and as it was a warm summer’s day this time, she would enjoy having the freedom of the garden.

When she first arrived, she manically darted around, exuberantly exploring the wonders of the garden and I thought her boundless energy would be too much for me again.

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But thankfully she calmed down after a while and we soon became firm friends.

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We played catch and fetch, although Lola hasn’t quite yet mastered the part about bringing the ball back – or maybe she has and is proving she’s nobody’s fool!

And as our friendship grew, she began teasing me by not letting me get to the ball or her new squeaking monkey ring toy. She gleefully even made me chase her around the garden a few times. And of course, that finished me off!

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When I needed to go upstairs regularly for rest breaks, she sat poised, waiting for me to return so we could play all over again. Not long after lunch, I was too wiped out for the rest of the visit, but she insisted on one last run around the garden before they set back off the beautiful Dales.

I think it’s fair to say we both had a good day and I’m already looking forward to our next play date…

☆♡☆

Hello summer, is that you?

Being mindful on the first day of summer:

Hooray for the long-awaited first day of summer, meteorologically speaking that is.

However, in typical English weather defiance, we have been promised a day that is “dull with grey skies and drizzle, some early heavy rain“.

Quite.

And incidentally, it’s the same temperature as it was over Christmas, 12-13 Celsius!

I am now slightly regretting putting my winter coat, scarf, hat and gloves, along with my warmer clothes up in the loft as I recently switched my limited wardrobe space from winter to summer attire!

But as we all know, we are only blessed with such rain to ensure our glorious nature is kept lusciously green and blossoming with life: the English countryside wouldn’t be as beautiful as it is without our very generous rainfall allowance.

And so I appreciate how the flowers, trees and plants will all be thankful for this wet day.

One of the best things about these kind of gusty days, is watching our neighbour’s magnificent sycamore tree from my bed.

I attempted to capture it on video and of course the tree became a little camera-shy, but here goes: please click here. (Ummm… I’m not really sure if this is going to work as it’s the first video I’ve ever tried to upload to YouTube and it’s very confusing for my brain-fogged mind!! So fingers crossed it works.)

It reminds me of a symphony with its branches the orchestra and the wind its conductor. I feel honoured to have a front row seat to its performances and am mesmerised by nature’s sweet music rising and falling, full of emotion and drama, as it reaches its crescendo.

I think this poem by Charles Ghigna sums it up perfectly:

A Symphony of Trees

Trees make such exciting sounds.
They whisper, when we’re near.
Whenever we pass by the trees,
This is what we hear:

We hear their branches sway and creak.
We hear the wind howl higher.
We hear a symphony of trees,
Of nature’s great, green choir.

We hear the squirrels scampering.
We hear the blue jays sing.
We hear the robin and the dove,
All sounds the trees can bring.

But one thing that we never hear
When we pass through the park;
We hear the trees’ sweet symphonies,
But we never hear their bark!

It really is a beautiful sight to behold.

☆♡☆

My meditation buddy

Being mindful while I meditate with my 4 yr old nephew:

My heart is overflowing.

I’ve just meditated with my four year old nephew. The lovely adorable chatterbox he is, I honestly didn’t think he could sit still and be quiet for more than 30 seconds.

But he did.

And it was a heart melty moment.

We’d been on a soul stroll and had had fun fussing Molly – a neighbour’s friendly dog – and Thomas fed her biscuits.

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Then we blew on a dandelion (or two or three!) and wished for everyone to be happy.

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It was then time to find Stick Man. We found him lying beside the brook and carefully ventured down the bank to put him back into the water so he could find his way home back to his family.

Thomas with Stick Man

Mission accomplished, we headed through the woodland area to listen to the birds – and we spotted a robin, Auntie Helen’s favourite. We looked at all the pretty flowers and really loved this stunning waterfall of blooms.

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When we got back home, Thomas asked if we could make a Banana Milkshake, which involves our special ‘Nana Milkshake song and dance. As I was exhausted I needed a lie down first, but Thomas insisted on coming upstairs with me saying he’d lay down with me.

And that’s when I had the idea to try a short, but fun meditation with him.

We sat on my bed legs crossed, with our hands on our knees – and Thomas gently entwined his fingers with mine. On the amazing Insight Timer app, I put on the gorgeous ‘Smiling Meditation’ by Andrew Johnson, who has the most deliciously deep voice and Scottish accent.

The meditation is 5 minutes long and is simply: breathe in, breathe out and smile.

I kept peeking at Thomas and he was doing it so beautifully, I just had to sneak a couple of photos and he caught me in the act!

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At the end of the meditation we are asked to “wiggle our fingers and toes” and Thomas did just that.

We finished with ‘namaste’ and a deeply felt hug.

My heart overflowing, I know I will cherish this precious moment for, as Thomas would say, “a long, long, long, long time”.

☆♡☆

#MillionsMissing

Being grateful for ME/CFS awareness raising organisations:

As someone who’s lived with ME/CFS for 3.5 yrs+ and desperately wants to get back to full health and live a normal life again, I’m so thankful there are groups raising awareness for ME/CFS.

#milllionsmissing (by ME Action) held a powerful global virtual protest today. Sufferers who are too ill to protest in person, sent a pair of their shoes to global locations including London, Washington and Melbourne.

If I’d have known, I would’ve sent a pair of my shoes too.

The empty shoes represent the millions of ME/CFS sufferers missing from their careers, social lives and families due to the debilitating symptoms of the condition.

The message had such a powerful effect on me it made me cry.

I hadn’t really thought of my condition in this way before.

But heartbreakingly, it’s true.

I am missing from my career, I am missing from my social life, I am missing from family get-togethers, I am missing from so many aspects of my life that bring me joy, like travelling, hiking, going to yoga classes, and so much more.

I try not to dwell on it, as it only brings me down and once I start on this downward spiral it’s incredibly hard to pull myself back up.

For my own mental wellbeing, I wholeheartedly believe that I need to keep focusing on the positives and finding the happy in the everyday little things – heck, it’s why I started this blog!

It’s what gets me through and it’s what gives me hope.

The #milllionsmissing campaign also represents how millions of doctors are missing out on proper training to diagnose and help patients manage this illness. And again in my personal experience, this is painfully and shockingly true.

I was led to a petition to Increase Funding For ME/CFS So We Can Find a Cure. Created by Mary Gelpi. I can safely say that she speaks for those who live with this life-upside-down-turning condition.

I’ll hand over to the lovely Mary to explain:

“I am only 31, and yet, simple tasks like taking a bath completely exhaust me. This is because I am one of millions of people worldwide who suffer from Myalgic Encephalomyelitis (ME/CFS), a complex, multisystemic disease that causes disabling symptoms like chronic pain, cognitive issues, and specifically severe weakness and crippling fatigue. Think of being hungover with the flu and running a marathon. Often that’s what walking feels like. Many days I am too weak to do anything but walk to the bathroom and back to my bed. Before I became sick, I was able to travel in college, fall in love, enjoy SEC football and graduate. Now, just a trip to the grocery store can land me in bed for days. I’ve lost my independence and take 25 pills a day just to manage the pain and symptoms of the illness. I have lost my life as I knew it.

Those of us in the ME/CFS community are used to health agencies not taking us seriously. There are no FDA approved treatments or cures for the disease on the horizon, which is the result of a lack of funding for research. In the 2016 federal budget, the NIH allocated $6 million toward researching ME/CFS. More than double that amount was spent on male-pattern baldness. We can do better. Please stand with me and the millions suffering with this life-sucking disease in demanding that the NIH drastically increase the allocated funding for ME/CFS research. The burden of this disease is huge, on families and the economy. It costs our country billions every year in lost productivity because more than half of us are forced to leave our jobs, too sick to work.  

For now, so many sick people have no where to turn. There are only a handful of specialists in the country who truly understand and know how to manage the disease, but most don’t have the money to travel so far just to see a doctor. Many patients are home-bound or house-bound. Some are confined to dark rooms, unable to tolerate sound, talking, or bright lights. We aren’t “living”, we are just hanging on. I started this petition because people suffering from ME/CFS just want our lives back, and that will only happen with an effective treatment and eventual cure. With your signature, we can hold the NIH and congress accountable for taking our illness seriously and honoring our request to increase the NIH research budget to $100 million for ME/CFS funding.  #WeCanDoBetter Let’s do it now.”

While Mary speaks from the US, the same is true for the UK and other countries around the world. And increasing the funding for ME/CFS in any country will have a global impact.

Please help us by taking a moment to sign this petition. Please click here. Thank you so much.

And check out Mary’s fantastic blog here.

☆♡☆