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Hospital Inpatient / Long-Stay Bag Must-Haves from Amazon

Hospital Inpatient / Long-Stay Bag Must-Haves from Amazon

Being an inpatient with a condition like ME/Chronic Fatigue Syndrome can be really difficult. The constant sounds, noises and smells are a recipe for sensory overload when just there for an hour, let alone days, weeks or months. I asked our network what tips, tricks and hacks they used when in hospital to ease or minimise sensory input to make the stay more survivable.

Tips For Managing (ME/CFS) Sensory Overload in Hospital

All your recommendations for post-op recovery items, tips and hacks in one place!

Post Laparoscopic (Keyhole) Abdominal Surgery Toolkit

Tips for Attending a Festival with a Central Line / on Parenteral Nutrition

Tips for Attending a Festival with a Central Line / on Parenteral Nutrition

Planning for future healthcare can feel difficult, but can also make difficult situations immeasurably easier. Here are some templates to help you put those plans in place.

Advance Directive vs. Advance Statement (with Templates)

Anyone with hypermobile Ehlers Danlos Syndrome (hEDS) knows that getting comfortable in bed can be a nightmare – pun very much intended! I’ve spent the last few years honing in on a set of tools for sleeping, all purchased from Amazon.

5 Amazon Purchases That Help Me Sleep with hEDS

The National Institute for Health and Care Excellence (NICE) have laid out new guidelines for how decisions should be made for and by patients in the NHS in England. These new guidelines centre around the concept of 'shared decision making' (SDM) - the idea that decisions shouldn't be made by the doctor alone, but by the doctor and patient in partnership. The guidelines lay out a series of processes and tools that can be used to achieve SDM as well as giving patients an idea of what they can expect and ask for in an appointment. Here are some of the things that are included in the guidelines so that you know what you are entitled to when it comes to making decisions about your health and care:

Shared Decision Making – Your Rights Explained

With so much pressure to respond to digital communications as soon as we receive them, we teamed up with Hidden Capacities to put together some email signature ideas that reset expectations of yourself and others. A small act to help us all slow down.

Email Signature Ideas

It can be difficult to remember all your important medical information in times of stress or pain, so having it all written down clearly can be a lifesaver (literally!). This is our tried, tested and approved of health document that we use ourselves.

Health Document for Emergencies & Appointments

It’s never fun to have an extended stay in hospital, but having the right things with you can make it easier. To help you out, we’ve compiled our tried and tested list of must have items for a hospital stay. Do you have any other ideas?

Inpatient Packing List

Over the last few months I’ve been trying out various CBD products to see what works and what doesn’t when it comes to common problems for our community like pain, lack of sleep and anxiety. CBD is becoming increasingly popular despite its often hefty price tag, and companies are popping up all over the place offering oils, tinctures, patches, sweets, vapes, creams and more. I tried a variety of companies and methods of taking it, from oils under the tongue, to drinks, sweets and bath bombs.

CBD Products Tried & Tested

NHS Digital's Plans for Our Medical Data - What You Need To Know and How To Opt Out

NHS Digital’s Plans for Our Medical Data – What You Need To Know and How To Opt Out

If you've spent time shielding with someone else, it can be hard to go back to being home alone, as Ellie is finding out. Here are her tips for feeling safer at home alone.

7 Ways to Feel Safer At Home Alone

Last year I decided it was time to start therapy. Having found CBT didn't suit me at all, I embarked on hypnotherapy. A few months in I thought I'd take a moment to reflect on what I've learned from and about hypnotherapy so far.

What I’ve Learned From and About Hypnotherapy (So Far…)

We know that exercise, friendship, sunshine on our faces, getting enough sleep and eating well are all key to our mental wellbeing. This mental health week I wanted to highlight the other little things I do to make myself feel better.

(Other) Ways I Take Care of My Mental Health

They say it's not easy being green, but house plants can be a great way to bring a little green into your life. You may think you don't have the energy to look afer them, or you have too many allergies to tolerate them, but our tips and tricks are here to help with everything from watering to feeding to pest and dust control!

9 Houseplant Tips for Chronic Illness Warriors

A good night’s sleep can feel like a dream in itself for those of us with chronic illnesses but our two-part blog series on sleep is here to help.

Resources for Better Sleep Part 2

We’re really disappointed that NICE have ignored the legitimate concerns of people who live with the harsh reality of chronic primary pain day in and day out. The guidelines will now drastically limit treatment options for patients, denying doctors and patients access to a full toolbox from which they can choose the right treatment for the individual. In doing so, NICE ignores that pain medication isn’t about allowing patients to be ‘pain free’, it’s about helping people reach a point where they can function in the day.

NICE Ignores Patients’ Concerns by Approving Guidelines On Chronic Primary Pain

In this introduction to exercising with endometriosis we look at what it is, how it affects exercise, how exercise can help improve symptoms and what adjustments can be made while exercising to help.

Exercise and Endometriosis

[Image description: Ellie sits on the sofa in a living room with windows in the background being administered entonox via a tube to her mouth from a bag on the floor. In the middle of the picture a paramedic stands with his back to the camera and in the foreground a grey coffee table has a light grey laptop on it with an NHS sticker on it].

Just Another hEDS Story – “All I wanted was him to fight even a little to help my pain”

Reasonable Adjustments At Work – Making Things Fair

Many of us know that a lack of sleep is a huge trigger of flares of chronic illnesses, and as such most of us try to get a good amount of good quality sleep in our lives. But there's no denying that sleep can be a BIG challenge when you live with chronic illness and chronic pain. Recognising all of that, we've put together some resources for improving sleep just in time for world sleep day!

Resources for Better Sleep Part 1

Having a camera put down your throat into your stomach (called an endoscopy or a gastroscopy) can be scary, but they are a valuable diagnostic tool and are sometimes also used as part of treatment (e.g. when placing feeding tubes). Your hospital will give you instructions, including about fasting, before the endoscopy, but we have some extra advice to make the experience a little easier...

5 Tips For Preparing For An Endoscopy

March is National Bed month, something I think all of us can get on board (or should I say

Enter Our Bed Themed Giveaway!

In this introduction to exercising with Reynaud's disease we look at what it is, how it affects exercise, how exercise can help improve symptoms and what adjustments can be made while exercising to help.

Exercise and Reynauds

We're really excited to be on the hunt for a talented and passionate digital marketing assistant to join our team. All the information you need is in our briefing pack here.

Join Us As A Digital Marketing Assistant

I recently became an APAP user after a sleep study found I have obstructive sleep apnoea. I expected the process of getting used to the machine would be long and awful, but with a few tips and the help of a charity, I'm sleeping SO much better than before. Here's what I've learned...

5 Things to Know for New CPAP / APAP Users

This time last year we wrote two blog posts, 10 activities to do at home with your favourite person and 10 activities to do out and about with your favourite person. This year the latter post isn't much use so we've got 10 more activities to do at home with your favourite person, whether it's your valentine, galentine, palentine, housemate, parent... you get the picture. While our activities are low energy, and don't involve big meals, we hope you'll agree that they still make for a special day.

10 more activities to do at home with your favourite person

Thank you to everyone who got in touch to give us ideas about how shared decision making can be integrated and improved in the NHS in England. Here's our submission to NICE in full for you to read.

Our submission to the NICE shared decision making consultation.

If you're someone for whom confrontation, pushing back or calling out doesn't come easily, here are some ways of letting your practitioner know that you're not ready to make a decision yet.

20 Ways to Ask Challenging Questions of Your Doctor

You all know by now that we've got more than 70 pre-recorded exercise videos on Patreon, specially made for our amazing community of chronic illness warriors. And now we have live classes too!!

Live Classes Are Here!

NICE are back with a new consultation, this time on 'Shared Decision Making'. This is another really important one, because it's looking at the relationship between healthcare professionals and patients, and how they come together to make decisions. In this post we've put together information about the proposed guidelines, and laid out our thoughts, plus we want you to use the form to tell us what you think of them!

New NICE Guidelines on Shared Decision Making: Have Your Say

Coronavirus Posters

Coronavirus Posters

We're excited to announce that we've launched a range of posters, the profits of which goes to supporting our work.

Welcome to Chronically Awesome Posters!

It feels an almost cruel irony that Stress Awareness Month coincides with a contentious US election, a second wave of Covid19 and a new lockdown. Alongside our weighted blanket giveaway, we've brought together resources that can help you understand and manage stress.

Resources for Managing Stress

Yesterday NICE released new draft guidance on the treatment of primary chronic pain for consultation. The changes proposed constitute a big shift away from medication - including painkillers - and towards other forms of pain alleviation. In this post we will outline the NICE draft guidance, our concerns, and how to have your say. It's a bit of a long one, but grab a cuppa, it's worth a read!

New NICE Guidelines on Treatment of Chronic Pain – What you need to know

With Christmas approaching at an alarming pace, we've put together a list of online stores owned by fellow chronic illness warriors.

Shop from Chronic Illness Warriors This Christmas

In this introduction to exercising with PCOS, Letisha Bates (aka @thatPCOScoach) looks at what PCOS is, how exercise can help improve help, and what strategies can be used when exercising with PCOS.

Exercise and Polycystic Ovary Syndrome (PCOS)

We were honoured this month to be featured on the newly re-launched Hysterical Women blog. Read our article here, titled

Guest Article for Hysterical Women

You spoke to us and we heard you. Here's our submission to NICE on their proposed new guidelines for the treatment of chronic primary pain.

Our submission to the NICE chronic primary pain consultation.

Following on from our post about the proposed NICE guidelines for the treatment of chronic primary pain, here are ways you can raise your voice so it's heard where it matters.

New NICE Guidelines on Treatment of Chronic Pain – Have your say

Whether you're new to our community because Covid-19 has caused longer term problems, or you health has declined for other reasons, welcome! Here are a few tips to get you started.

5 Top Tips for if You’re Newly Chronically Ill

I came across an old diary this week. What I had written moved me in its expression of fears I very much still have today. I thought I'd share them because I'm pretty sure - in fact I know - other people will have them too and I want those people to know those fears are completely valid. All these passages are things I genuinely wrote. Be kind.

Abiding fears

With face coverings now mandatory and with so many styles, brands and variations to choose from, Nikki has put together a useful list of reusable and eco-friendly face coverings.

Our top five reusable, eco-friendly face masks

In this introduction to exercising with hypermobility (such as HSD and EDS) we look at what it is, how it affects exercise, how exercise can help improve symptoms and what adjustments can be made while exercising to help.

Exercise and Hypermobility

Beth Foster, exercise instructor for Chronically Awesome, gives us her five top tips for exercising when you have eczema.

Video Blog: My 5 tips for Exercising with Eczema

With Founder Ellie's birthday coming up, she asked you what presents you ask for from friends, family and colleagues. Here's the list you gave us.

90+ Gift Ideas for Chronic Illness Sufferers

In this introduction to exercising with PoTS or OI we look at what they are, how they affect exercise, how exercise can help improve symptoms and what adjustment can be made while exercising to help.

Exercise and PoTS / Orthostatic Intolerance

Meet Mila, a lifelong member of the charity sector and one of our Trustees.

Meet the Team: Mila

Nikki is a chronic illness warrior and one of the project managers on the exercise video project.

Meet the Team: Nikki

You may have noticed we've been a little quiet lately, especially on social media. That's because while all looks calm on the outside, March and April have been super busy months at Chronically Awesome HQ, making the most of lockdown to get loads done. So we thought we'd pen a little update to let you know what we've been up to...

Update O’Clock!

To mark Chronically Awesome's inagural Trustee Board meeting, here's a chance to get to know more about our Trustees!

Meet the Team!

So you'd like to help us, thank you! Not sure how? No problem, here's some ideas...

Get involved and help Chronically Awesome

Got something to say? Want to share your experiences? Feel like something could be done better? Found something that really helps? Got some advice? Let us know!

Write for us

Meet Hanna, one of Chronically Awesome's trustees.

Meet the Team: Hanna

Meet the Team: Dave

Meet the Team: Dave

Esther is one of Chronically Awesome's trustees. In this post we find out more about her.

Meet the Team: Esther

Chronically Awesome was set up to help people living with chronic illness, and that's at the core of what we are - and what we continue to plan to do. So, this is our invitation to take the mic and tell us, what would make your life easier, better, more fulfilled? In essence, how could we help you?

How can we help?

The covid-19 crisis feels like it's turned me into an emotional yo-yo, and it feels like I'm not the only one. I've put together a few tips that I've been trying to live by to keep the days passing, and the negative emotions under control (without denying them).

Survival tips for #shieldinglife

Earlier this week marked a year since I had my left hip replaced, and what a year it's been. I wrote earlier on about preparing and surviving for the procedure, but 12 months and hindsight have given me even more perspective. So here's five reflections I've had over the course of this anniversary week.

Happy birthday to my hip – reflections on a year with a new hip

Thanks to your efforts in sharing something you found useful, we've had more than 4.5 million views of our Facebook post, and there's more...

Thank you for taking us viral!

If you're self-isolating as a preventative measure against coronavirus (COVID-19), you might find it useful to use these posters by front doors etc.

Posters for those who are self-isolating as a preventative measure

In 2019 we asked you - chronic illness sufferers, family, friends, colleagues and healthcare professionals - to share your knowledge, experiences... everything you know about life with chronic illness, and gosh you told us more than we could have ever expected. Powerful, devastating and important, what you've told us is important not just in guiding our work, but in communicating to the world our truths.

Our Research: Everything You Told Us

Weighted blankets - all the rage at the moment, but not an especially cheap investment. A couple of months ago I took the plunge and bought one, hoping it would improve my sleep. Here's my thoughts after 8 weeks of use...

Weighted blankets, reviewed by a complex chronic illness sufferer

If you're wanting to get out and about with your partner(s), friend(s) or family, here's ten ideas for low-energy activities that don't have food or late nights as the focal point.

10 activities to do out and about with your favourite person

Staying in doesn’t have to be boring or like a ‘second best’ option. In fact sometimes snuggling up with the person or people you love can be even more special. So here’s a few activities you could try right from the comfort of your own home (/bed!).

10 activities to do at home with your favourite person

Welcome to my guide to surviving a hip replacement in your thirties (or twenties or whatever!). When preparing for my surgery I felt like there was advice out there for people significantly older than me, and looking back on my experience there are things I wish I’d known.

Surviving a hip replacement in your thirties

The idea of rehabilitation (rehab) isn’t a new one. But pre-habilitation seems to be something not widely considered or offered… and it should be! In March 2019 year I had a total hip replacement as a result of Ehlers Danlos Syndrome. The replacement was a long time coming - several years in fact, plus five other procedures, endless physio, hydrotherapy, stretches and medications. That long lead-in time allowed me to plan and prepare for surgery and so, six months before I went under the knife, I started pre-hab.

The power of pre-hab

Back in March 2019 I had a total hip replacement at the age of 30. Whilst it’s not unheard of for someone young to have a surgery of this type, I still felt like there weren’t many people out there who I could quiz about their experiences, and not many blogs that helped me understand how to prepare and what to expect. So here’s the first of two blogs that cover how to prepare and pack for surgery, and how to survive your time in hospital and at home after.

A guide to preparing and packing for a hip replacement

I’ve been seeing Charlie – the physio specialising in this area at Kings – for a little while now, so I thought I’d write a bit about what to expect when undergoing respiratory physiotherapy with him.

Respiratory Physiotherapy for PoTS – why it’s useful and what to expect

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Life Is A
Tower

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Crab is full of protein and selenium, which has anti-inflammatory properties, plus this recipe is super easy to make low FODMAP and it's dairy free. If you can't find fresh dressed crab then tinned crab works great too and can be found in most supermarkets. This easy recipe is simple, great for your gut and sure to impress.

Clever Guts
Crab Spaghetti

It's hard to deny that chronic illness takes a lot from us. It can take our friends and family, our work and social lives, our financial independence... it can take a great deal. But sometimes - on those rare good days - I can see that chronic illness hasn't just taken from me, but given too.

Does chronic illness give as much as it takes?

Some of us can't fall asleep, many of us need loads and loads of it, and a proportion of us are put to sleep by medication. We all know that we should switch off our screens, avoid coffee in the afternoons and sleep in a dark room, but here are some other tips for getting better sleep.

Sleep hacks for those of us with chronic illness

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These summer rolls are healthy, vegan, gluten free and easy to make low-FODMAP, plus their super easy. Win!

Peanutty Tofu
Summer Rolls

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It can sometimes be hard to recognise when you've had a good week, so we rarely feel like we've earned a treat for doing well rather than for feeling ill. This reward chart will help you look back over the week, see how awesomely you're doing, and earn yourself a reward!

Chronically Awesome’s
Weekly Reward Chart

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This veggie taco feast powered my dad, husband and I through the 6 Nations super Saturday of rugby. Healthy, varied and totally yummy, it's also super easy to put together.

Veggie Nacho
Feast

What Is Recovery Without Cure?

I often feel a mixture of selfish and useless because I spend so much time engaged in ‘self-care’. To the outside world, my everyday life looks like other people’s self-care days, but is this really self-care for me?

Are we too busy taking care of ourselves to take time for self-care?

The Story Behind Chronically Awesome

The Story Behind Chronically Awesome

Bagels can be a great base for a quick and easy meal, and can be wrapped up for on the go too.

6 Bagel Fillings For A Quick & Easy Meal

In our article titled

5 More Steps To Approaching A Group Exercise Class

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Getting out and about can be hard, and it can sometimes feel like planning an outing is some sort of military operation. To make life just a little easier, we tapped into the Chronically Awesome community to ask them what they pack in their bags when they go out to give you some hints and tips.

Handy
Handbag Hints

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This 'Pacing for People With ME' booklet by Action for ME is useful not just for those with ME/CFS, but for anyone looking to develop their pacing skills.

Pacing Advice
Booklet

We learn so much as we live our lives with chronic illness: we learn how strong we are, what the word

What I wish I’d been told when I was first diagnosed

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Meet Ellie, founder of Chronically Awesome. She answers questions ranging from what inspired her to set it up, to whether she is a cat or dog person.

Meet The Team:
Ellie

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This sandwich is so simple it hardly deserves a recipe but it's one of our faves. Extensive testing has shown it's a hit with veggies & meat-eaters alike.

The TLT
Sandwich

Being chronically ill makes sticking to good habits even tougher than normal. Here are some hints and tips for getting into, and sticking to a good routine.

How To Keep Motivated With Chronic Illness

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These wraps are filling, satisfying and endlessly versatile - you can use whatever you have around. My friend Gillian makes them at least once a week!

Loaded Falafel
Wraps

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Ellie tries to work out why certain classes at the gym maker her cry, and in the process learns it may not be a bad thing. Bring on the tears!

Learning To Cry
At The Gym

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This dish is super easy but packed full of flavour. With this recipe we offer vegan and Low FODMAP options and hacks to make preparation easier.

Miso
Aubergine

Group classes are fun and a good way to meet new people, but they can also be intimidating. So here are a few tips to help you get started...

5 Steps To Approaching A Group Exercise Class

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Chachouka (also known as Shakshuka) is a North African dish of warming spices that makes a great brunch, lunch or dinner packed with nutritious goodness.

Black Bean & Feta
Chachouka

Welcome to Chronically Awesome!!

Welcome to Chronically Awesome!!

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