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Energy Boosting Matcha Latte

  • Post published:7 April 2022
  • Post category:Nutrition
  • Post comments:1 Comment
Read more about the article Energy Boosting Matcha Latte

Introduction to Energy Boosting Matcha Latte Welcome to this post about energy boosting matcha latte. As someone with severe ME, I always lack energy and constantly experience serious fatigue. This…

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GET removed from NICE guidelines on ME/CFS

  • Post published:12 December 2021
  • Post category:Treatment
  • Post comments:0 Comments
Read more about the article GET removed from NICE guidelines on ME/CFS

Introduction On 29th October 2021, GET was removed from NICE guidelines on ME/CFS. NICE is the National Institute for Health and Care Excellence. This is a short article which aims…

Continue ReadingGET removed from NICE guidelines on ME/CFS

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Game changer alert! Pill organisers also called Game changer alert! 
Pill organisers also called dossette boxes are a great way to remember to take your daily medications and supplements. And an energy saver in terms of opening one container instead of several (especially the “push down and unscrew” kind 😫).
I have 2 large organisers (each day is split into 4 time periods: morning, lunch time, supper time, bed time) and two of them covers me for a fortnight. Usually, I have a brain fog free hour sometime in the two week period which enables me to refill them. You can of course also ask for help to fill them if you struggle.
In the U.K., if you take several NHS prescription medications it may be possible for your box to be made up by your pharmacist. Not everyone is eligible for this (it will often depend on the type of medication) but it’s worth checking with your pharmacist to see if you qualify.
Image description :
A white slide with a cartoon lightbulb at the top, the text “energy saving spoonie tip” arcs around the top of it. Underneath is a photo of a weekly pill organiser on a pink background, each day’s compartment if filled with a variety of pills and a handful of loose pills lies in front. At the bottom of the slide the text reads “dossette/pill organiser”
#pillorganiser #dossettebox #energysaving #energysavingspoonietip #spooniesupport #MECFS #Fibro #MS #Lupus #autoimmunedisease #autoimmune #arthritis
Did you know that rates of disability and chronic Did you know that rates of disability and chronic illnesses (including asthma, arthritis and obesity etc) are far higher amongst the lgbt+ community than in the general population? In the case of bisexual men, the rate of disability is twice as high (40% compared with 20% amongst the general population).*
Despite this every year - notably, during Pride month - there are media articles about how disabled people continue to be excluded from many lgbt+ events. 🚫♿️🏳️‍🌈 
The lgbt+ community knows well what it is like to be a marginalised group and how important Pride is. Everyone has more than one facet to their identity, which is why intersectionality is so important. (Intersectionality = the overlapping or intersecting of identities and their experiences of oppression and discrimination). So if a lgbt+ event does not honour intersectionality, it is not inclusive.
Also, a side note: everyone’s experience and situation is different even if they have the same disability, sexuality, gender, race, religion etc. Kindness, compassion and respect are the way forward.
Love is love, and Pride should be accessible to the whole lgbt+ community 💗⚧🏳️‍🌈🏳️‍⚧️ 
*Fredriksen-Goldsen et al, 2012 Disability Among Lesbian, Gay, and Bisexual Adults: Disparities in Prevalence and Risk
Am J Public Health, 102(1): e16–e21
#DisabledPride #Pride #LoveisLove #Accessibility #DisabledAndProud #pridemonth #pride🌈 #lgbtq #lgbtqpride
Is the heat stressing you out? Remember to take it Is the heat stressing you out?
Remember to take it slowly, temperature extremes can be very taxing on the body 🥵 especially for spoonies. Tomorrow is set to be even hotter in the U.K. and much of Western Europe.
Staying hydrated and getting plenty of rest can help, as can wearing loose clothing made of natural fibres and employing all the tricks to keep your space cool (curtains/blinds, fans, cooling gel pads/pillows etc). If you’re heading outside don’t forget a hat and sunscreen.
To relax try a calming breathing exercise which can help reduce the stress. Check out our insta reel for a super easy one which will make you feel better in a few minutes - it’s also shared in stories.
Image description: a photo of the sea with mountains in the background taken at sunset, the sea is a soft blue whilst the mountains and sky have a pastel pink hue. A small figure stands on a paddle board holding an oar. Large white upper case text overlays the image and says “slow deep breaths”.
#heatwave #heat #heatwave🔥 #flamingjune #meditation #calm #slowdeepbreaths #breathing #destress #spoonie #spooniesupport #dysautonomia #homeostasis #superhot #summer
Hugest of thanks to @smileforme and @bearhugsgifts Hugest of thanks to @smileforme and @bearhugsgifts for this gorgeous Carer’s week package my Mum received.
She’s been my carer for 5 years, giving up her retirement plans of travelling to provide for my essential daily care needs and give me the best chance at improvement, and (hopefully someday soon!) recovery.
She was so surprised and delighted, she sends her heartfelt thanks for the recognition and generosity 💗
If anyone would like to donate to @smileforme you can do so via their page. They also provide “smiles” to people with ME who are often bed or housebound, do not receive effective treatment (because there isn’t any) and find themselves forgotten about by, and isolated from, society.
Image description: a photo of a blue box containing five cosmetics including face masks, soap and an essential oil roller on a bed of white shredded tissue. There is a small notecard with the smile for ME logo and the box has two cardboard paws which fold out from the lid where it says “consider this a bear hug”
#carersweek #carersuk #carersupport #pwme #MECFS #Spoonie #Spoonielife #selfcare #selfcarepage #carepackage
Have you seen our Monday Memes? Each Monday we sha Have you seen our Monday Memes?
Each Monday we share a few memes in our stories which highlight some of the most commonly experienced frustrations of life as a spoonie.
If you’ve missed them, hit the memes highlight to catch up.
Any resonate particularly with you?
Image description: part of an oil painting called The Fallen Angel, by Alexandre Cabanel (1847). The angel’s very angry face is shown and he has a tear in his eye. Over this is written in white text “When someone moves your wheelchair without permission.”
#MondayMemes #SpoonieLife #SpoonieMemes #ChronicallyFunny #chronicillness #chronicpain #spoonielife #spoonieproblems #spooniecommunity
The theme of #carersweek 2022 has been to make car The theme of #carersweek 2022 has been to make caring visible, valued and supported.
We’re sharing a huge “thank you” to all unpaid carers for the selfless work they do.
We’re also sharing 3 statistics from a recent report and how you can support carers.
❣️There has been a 42% increase in unpaid carers providing significant care (>20hrs per week) since October 2020.
❣️4.87 million unpaid carers are worried about the impact of caring on their physical and mental health.
❣️2.86 million unpaid carers are worried about the impact of not getting a break.
Statistics and slides from @carers_week 
Did you know that there are around 800,000 child carers in the U.K.? You can support them through @honeypotchildrenscharity
to support adult carers see @carers.trust and @carers_uk 
Image description 
Slide 1, collage of 4 pictures
(An Asian man wheels an elderly Asian woman in a wheelchair along the road, a black man covers a black woman sleeping on the sofa with a blanket, a white woman stands by a sofa and leans towards an elderly white man sitting on it, an envelope with a white card with the words “thank you!” and a heart written on it in purple.
Slides 2,3 and 4 each present one of the 3 statistics outlined above. The white slides feature a graphic of a person sitting and looking worried with bold text outlining the statistic next to them. They also contain the blue and white Carers Week logo.
The final slide lists the web addresses of each charity, alongside a graphic of a child holding a big heart for Honeypot and a graphic of two hands one white one black holding each other for the adult charities. 
Full text featured on each slide is in the alt text.
#CarersWeek #UnpaidCarers #Care #caregiving #mental health #physicalhealth #health #healing #respite #respitecare #break #resting #disability #elderly #frail #caring
Today marks the start of Carers Week, as someone w Today marks the start of Carers Week, as someone who receives care 24/7 I know just how essential Carers are. Today I’m sharing some facts about these unsung heroes.
👉🏻There are over 6.5 million unpaid carers in the U.K.
👉🏻 A carer is someone who provides unpaid care and support to someone (often a family member or friend) who has a disability, illness, mental health condition, addiction, or who needs extra help because of frailty such as the elderly. (It’s not someone who volunteers or is employed to provide support).
👉🏻 The COVID-19 pandemic had a massive (yes, “unprecedented”) impact on unpaid carers’ lives, because many increased the level of care they provided, extended the number of people they cared for (e.g. elderly relatives and neighbours) and then maintained those levels of care for 2 years (many ill, disabled and elderly had to shield) without respite.
👉🏻 It’s so important that this type of care becomes: VISIBLE, VALUED and SUPPORTED
👉🏻 How can you help? Support the campaign which calls on the government to provide a recovery and respite plan for unpaid Carers. See @carers_week or www.carersweek.org for more info and a super easy way to write to your MP.
#carersweek #unpaidcarers #unpaidcarework #illness #disability  #frailty #addiction #mentalhealth #visible #valued #supported #unsungheroes #carers #caregiving
It’s been a busy, fun packed long weekend for ma It’s been a busy, fun packed long weekend for many people. Did you do anything fun? Let me know in the comments what your favourite moments were.
If you’re flagging or have post-exertional malaise (PEM) remember to have lots of quality rest to give yourself time to recover. Rest is restorative and an essential form of self care.
Image description 
A white slide with an image of illustrations of fruit tree branches. Both leaves and a peach, cherries and part of a pear can be seen. In the centre the word Rest is written in a beige script.
#rest #restingishealing #recover #recovery #recoveryispossible #recoveryjourney #PEM #Spoonie #spoonielife #spooniesupport #selfcare #positivity #mentalhealthawareness #restwell #healing #recovering
Want tips on how to loose friends and alienate peo Want tips on how to loose friends and alienate people?
I have them. And I’m sharing them in today’s blog post.
Loneliness is this year’s theme for #mentalhealthawarenessweek and it’s a big one for those who are disabled.
So big, in fact, that I’ve had to split the post into two parts. Today’s looks at:
1) the disparity in wellbeing metrics (like loneliness and anxiety) between disabled people and non-disabled people
2) what loneliness actually is
3) my own experiences at becoming lonely after becoming disabled
See linktree in bio and today’s story for the link. Or if you’re reading later, the new “blog” highlight.
Part 2 will be up in a couple of weeks.
Does your illness or disability affect the number or quality of social interactions you have? Do you feel lonely? If you feel able to share, drop a comment below. And if not, my DMs are always open if you’d like a chat or just to say hi.
Image description:
A series of 3 slides, the first features a picture of a woman with dark hair lying on a bed, her arms are pulled up to her face and she’s covering her eyes with her fists. Text is superimposed to the right of the image. Slides 2 and 3 feature purple text on a white background, the full text for all of the slides can be found in alt text.
#mentalhealth #mentalhealthawareness #mentalhealthmatters #lonely #loneliness #anxiety #health #wellbeing #depressionawareness #disability #disabledandlonely
What does health and wellbeing mean to you? Is it What does health and wellbeing mean to you?
Is it the absence of illness or something more… a feeling of balance, energy or vitality?
The World Health Organisation (WHO) define health as “a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity. The enjoyment of the highest attainable standard of health is one of the fundamental rights of every human being without distinction of race, religion, political belief, economic or social condition.”
We have content 6 pillars over on the blog: nutrition, rest, aids and adaptations, balance, reading (i.e. learning about health), and treatment. We see these as cornerstones of health and living well with chronic illness and/or disability. They are also broadly reflected on our social media.
#Health #wellbeing #disability #disabilityreframed #disabilityawareness #spoonie #chronicillness #chronicillnessawareness #nutrition #rest #sleep #balance #reading #adaptations #treatment #spooniesupport #wellness
Picture the scene; you’re going through a terrib Picture the scene; you’re going through a terrible flare, bedbound and barely able to move or speak. You’ve got brain fog and very little energy.
You need to get dressed for your hospital appointment, you can’t find your socks, where are they? Or your carer has come to dress you, how are they going to find your clothes?
Does your carer remember where your meds are stored? Where your appointment letters are filed? Where your blue badge is?
Labelling the drawers, cupboards, files etc you use regularly might seem a little much, but it saves critical energy when you need it most. 
And if 90% of the time you do actually remember where your socks/bills/meds are, then that’s something to celebrate!
Image description:
A white slide with a small graphic of a lightbulb at the top and the words “spoonie energy saving tip” around it. The main graphic below this shows two brown chests of drawers each labelled with the contents. Two pink files lie on top, one has “Bills” written on the spine. At the bottom of the slide is the word “Labels”.
#Spoonie #SpoonieLife #energysaving #EnergySavingTip #carers #carersuk #brainfog #pain #energylimitingchronicillness #mecfs #fibromyalgia #ms #lupus #arthritis
Did you know that in the UK, 1 in 5 people have a Did you know that in the UK, 1 in 5 people have a disability? That’s 20% of the population.
80% of disabled people have a hidden disability. Hidden disabilities include a wide range of physical and mental conditions that are not visible or immediately obvious.
#disabilityawareness #inclusivitymatters #accessability #accessabilitymatters #disabled #disability #invisibleillness #invisibledisabilitiesweek #invisibledisability 
Image description: 
A collage of four photos on a white background. Clockwise from top left; a white man in a pink shirt sitting with his arms rest on the table in front of him, a black sitting woman in a wheelchair resting her chin in her hands, a white woman with Down’s Syndrome wearing boxing gloves rests against the ropes in a boxing ring, an Asian man stands in a park opposite another person they’re holding hands at shoulder height.
Happy #WorldMeditationDay Have you tried meditati Happy #WorldMeditationDay
Have you tried meditation?
There is a wide range of meditative practices and methods, so if you’ve never tried why not explore some options? I’m a fan of the app @insighttimer which has a ton of contributors doing a variety of different guided meditations.
The best thing about meditation is you don’t have to be “good” at it. If your mind wanders, just acknowledge it in a non-judgmental way and bring your focus back.
There are lots of health and wellness benefits to mindfulness, today I’m share 5 of the big ones. Like any habit, it takes practice but you can feel the benefits from your first go.
Image description:
A cream slide with a pastel graphic of a lady meditating on a mat with a candle, nearby is a potted plant. At the top of the slide, the title reads: 5 top benefits of meditation. These are listed as:
1. Reduces stress
2. Relieves anxiety 
3. Develops self awareness 
4. Lengthens attention span
5. Enhances emotional well-being 
#meditation #meditative #meditationbenefits #mindfulness #selfcare #mentalhealth #mentalwellness #worldmeditationday2022 #Calm #becalmbestrongbegrateful
Ad/PR Adding a bit of sparkle to my day with @astl Ad/PR Adding a bit of sparkle to my day with @astleyclarke the shades of blue in this bracelet stack remind me of azure seas and summer holidays. Swipe for the gorgeous close up!
Do you have any holidays booked?
I so wish I did, but I’m not well enough at the moment. Hopefully later in the year 🤞🏻
If you’d like your own bracelet stack (who wouldn’t?!) hit my discounts highlight for a link to buy and 10% off with code ACBBRR (If you use this like I make a small affiliate commission at no additional cost to you).
Bring on the summer!!!
#theACcircle #astleyclarke #braceletstacks #summerblues #summerseas #disabledandcute #thursdayvibes #wallpaper #bracelets #bracelet #myastleyclarke
Do you show yourself compassion? Self compassion Do you show yourself compassion? 
Self compassion involves being understanding toward ourselves when we suffer, fail, or feel inadequate. It is an important element in coping with disability.
Research shows that people with more self-compassion experience fewer negative emotions and problems with catastrophizing, as well as greater positive effects which improves wellbeing.
Self-compassion can be a means to coping with chronic pain. It also strengthens our mental health making us more resilient.
Self compassion may require a change in mindset, so that we show ourselves kindness and understanding in the place of anger or frustration. So like any practice it will take time to develop the habit. But it’s worth doing the work for a life with greater feelings of wellbeing despite difficult circumstances.
#selfcompassion #selfcompassionjourney #mindfulness #mindfulliving #chronicillness #chronicpain #spooniesupport #kindness #selfkindness #compassion #livingwithdisabilities #disabled #reframe #mindset #mindsetmatters
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About Me

About Me

rosegold reports

Support for living well with chronic illness and disability. CEO Sabina has a PhD in medical geology and a background in media and marketing.

Latest posts

  • 5 Best Bathing Aids
  • Chronic Illness, Disability and Loneliness (part 1)
  • Energy Boosting Matcha Latte
  • Green Mother by Sarah Myhill and Michelle McCullagh
  • ME/CFS Sound Sensitivity

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