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6 February 2023ReadingIntroduction to The Fatigue Book by Lydia Rolley Welcome to this blog post on The Fatigue Book. The full title is The Fatigue Book – Chronic fatigue syndrome and long COVID fatigue: Practical tips for recovery by Lydia Rolley. Published in October 2022 by Hammersmith Books, my thanks to the publisher for a copy in exchange for an honest review. It’s available as both paperback and ebook. Fatigue in ME and long COVID The fatigue felt in ME and long COVID is different to normal tiredness, or even exhaustion. It’s a hugely debilitating condition. It can affect cognitive function, physical energy levels and the ability to cope with emotions or socialising. As someone with ME, I am no stranger to crippling fatigue. Before I was sick, I was an RAF reservist. I completed a 50-mile road march and unfortunately, I missed the training beforehand. It was tough! Afterwards, 2 of my toenails fell off and my muscles were so sore I couldn’t climb stairs for 5 days. I thought that was fatigue. I was wrong. Today I struggle to walk 20 metres. On a bad day, the pain and fatigue make the six steps from my bed to the bathroom feel like a hundred road marches. The fatigue affects my body (muscles, heart rate, digestion etc), mind (difficulty concentrating, overwhelm from sounds and lights) and emotions (not enough ‘bandwidth’ to cope with strong emotions). Clearly, I need all the help I can get for managing fatigue! The Fatigue Book Review I’ve read quite a lot about managing fatigue. One of the main skills needed is pacing. Pacing is very difficult to do well. So, I was keen to read more about fatigue management and how to achieve the difficult balance between doing too much and too little. Lydia Rolley’s book is excellent for this, and I highly recommend it! The book is designed for people with fatigue because there no long chunks of text. Most of the advice (presented as tips) covers no more than two pages, key points appear in boxes. As soon as I saw this, I knew it had been written by someone who understands what it’s like to try to learn and remember new information with brain fog. Content The book contains 100 tips on dealing with fatigue. They are grouped thematically into 11 chapters covering areas including: mindset, sleep, energy, pacing, relationships etc. The tips are indexed and there is also a general index plus reference list. The advice is thorough, insightful, and practical because it’s written based on the author’s long experience as an occupational therapist. I’ve been sick for 5 years and have a science background, so I thought I knew quite a lot about managing ME, but there was plenty of new information for me and some very beneficial advice. I particularly like that the author creates space for the reader to reflect on each tip. It isn’t just a case of ‘do this…’ or ‘don’t do this…’. Instead, there are questions and little exercises for the reader to think about how they might better tackle the area themselves. There are great resources to help, such as activity diaries, flow charts for pacing and more. Style The style of this book lends itself well to being read in bitesize chunks. Even for those with severe ME or long covid. If you’re struggling and can only read a little at a time, you can aim for reading just one tip per day, or a couple a week. Each tip has the main body of text, which has details about the tip, as well as a grey summary box. So, if you’re really struggling, go for just the grey boxes. I’ve bookmarked all the tips which I think would work well for me, or which I need to do better. This helps me to remember which ones to refer back to often and remind myself. The language is very simple and easy to follow. There’s no unnecessary detail or jargon. Each tip has a little proverb and/or prayer associated with it. I’m not religious so I was ambivalent about the prayers, but I do really like the proverbs. There are also great illustrations and diagrams throughout, which is not only visually pleasing but also helps to demonstrate some of the points. The advice is both practical and comprehensive. These are real tips which can make a difference and they don’t just cover the basics. I was particularly impressed that secondary issues are also covered (e.g. relationships, managing comorbidities etc). There is also advice for friends and family members. Some tips are easy to do (tidy your space) whilst others harder (adjust your mindset). As they cover different areas, you can tailor the advice to what you need help with. That makes this a hugely valuable book! Cover Synopsis for The Fatigue Book by Lydia Rolley The Fatigue Book is a practical guide to managing chronic fatigue, whatever its cause, in order to enable recovery at a pace that works for the individual. It outlines 100 proven fatigue management tips drawn from the author’s personal and professional experience and is suitable for people of all ages affected by long COVID, CFS/ME and other chronic conditions, and for their family and friends. Whether someone is at the start of their recovery journey or has been doing this for some time, there is clear, practical advice based on a self-management approach that applies the principles of Pacing and Activity Management (but NOT Graded Exercise), as recommended by the latest NICE guidelines. Lydia Rolley brings her unique joint training and experience in occupational therapy and psychotherapy at a specialist NHS Fatigue clinic to provide an approach that recognises physical, mental and emotional/spiritual needs suited to the individual. Each chapter includes a range of Tips from which to choose plus Food for thought, Pause, and Mind, body and soul. Essential text is highlighted so that if you struggle with brain fog you can focus purely on that in the early stages of your recovery. [...]
6 November 2022BalanceIntroduction to the Christmas Gift Guide 2022 Welcome to the RR Christmas Gift Guide 2022! Many gift guides for people with chronic illness and disability focus on specific aids and adaptations. And those are definitely helpful! This Christmas gift guide is a little different. The gifts here are those which anyone might enjoy, but they are chosen and tested with chronically ill and disabled recipients in mind. As everyone is different, please bear in mind your own support needs or those of the intended recipient when choosing. The partner companies are selected for the quality of their products and the ethos of their brand. In particular their commitment to sustainability and social enterprise. The items featured here are gifted in exchange for an honest review. Many items have discount codes to reduce purchase costs. A few codes are affiliate, so I will receive a small percentage from sales at no additional cost to you. If you are reading this post after Christmas 2022, do check the discounts highlight on Instagram as I try to keep codes updated there for the brands with ongoing collaboration. Cosyfeet Socks Cosyfeet make extra roomy shoes and socks without compromising on style. They are suitable for those with diabetes, swollen feet, reduced mobility, or other difficulties with standard fitting footwear. They’re recommended by many UK podiatrists, chiropodists and occupational therapists. Cosyfeet have a wide range of socks in a variety of styles and colours. I chose the Supreme Comfort Socks (in oatmeal) for day time (£21.50 for 2 pairs) and the Super Soft Bed Socks (in ivory) for nights (£17.50 for 2 pairs). I cannot recommend them highly enough! The Supreme Comfort socks are really stretchy so very easy to put on (by me or carer) yet they’re not baggy or saggy. They feel soft, comfortable (smooth toe joint) and keep my feet at the perfect temperature. I was surprised they are so adaptive to temperature, this is due to the composition of cotton and merino wool fabric. Merino is moisture wicking, breathable and has in-built climate control properties. The Super Soft bed socks really are super soft, they’re also super comfy as they have a very loose fit. Poor circulation means I often have chilly feet and these are warm and cosy. If you need warm socks for day wear, check out the gripped socks. These have a very soft terrycloth lining, loose ankle fit and slip-resistant tread. Both the supreme comfort and super soft bed socks wash well in the machine. They cost a bit more than standard socks but they are so worth it. In fact, long-term I think I’ll save money as they won’t need replacing as often. The majority of Cosyfeet socks are made in the UK. Last order dates for Christmas: December 20th using standard delivery service, by 2pm December 22nd using priority delivery service. Lemonade Box Self-care is so important for supporting health. A good self-care programme includes a range of aspects and one is enjoying little everyday moments of joy. A self-care subscription box is a great way to incorporate some mindful treats into each month. Lemonade box contains 5-6 wellness products each month, guaranteed to be worth a minimum of £60. Products come from both independent and globally recognised brands and are cruelty free. There are no product repeats, ever. There’s a card telling you about the contents (including what is recyclable; pretty much everything) and another with guidance on the month’s theme. The box can be reused and packing peanuts are biodegradable. Contents of September Box I received the September (worth £77.75) box to try, which is themed around ‘boundaries’. Excellent timing for me as it’s something I’m currently working on. The box contains a Cosmic Juice scented candle in Daydreamin’ which subscribers get to try before it goes on general sale (gorgeous mysterious scent!). There’s a pore refining serum from The Elements which has 5% niacinamide and 0.5% Zinc PCA. This improves skin clarity and promotes a healthy skin barrier; I really rate it. Another exclusive is the Bloom&Blossom off to bed bath oil. This is a luxurious, relaxing bath oil with sweet almond, lavender, ylang ylang and apricot kernel, I love this too. Next is Grums aarhus facial cleansing milk, this comes in a pump dispenser (I’m a big fan of these). It’s a mild but effective cleanser which can be used with a cotton pad so I keep it on my bedside cabinet for use on bedbound days. The Umberto Giannini banana scalp + hair oil is ideal for dry, textured and frizzy hair. It contains banana (rich in Potassium and vitamins A,B and C) and coconut (antioxidants and vitamin E). This isn’t my hair type so I gifted it to a friend and she found it made her hair softer and less dry. Finally, there is a bonus gift of Well&Truly banging BBQ snack, this was gluten free so ideal for me. After doing some mindful meditation with the Cosmic Juice candle, I did some less mindful snacking with Netflix and these crunchies. Because life is all about balance, right? A one-month rolling subscription is £25, you can get up to 16% off if you pre-pay for 12 months. Lemonade Box is a small British female founded business. Hidden Prints Spoonies spend a lot of time resting. If you have an energy-limiting chronic illness you’ll be familiar with stints in bed with limited stimulation. Staring at the walls gets boring fast, so a pretty bit of eye candy goes a long way in boosting mood. Hidden Prints have a huge range of prints to fit all tastes and styles, for both adults and children. There are too many categories to list here; but briefly they encompass sport, culture (films, music etc), food and drink, nature, travel, abstract art and a range of slogan types. They’re very stylish and fit a wide range different rooms and décor types. They’re also ideal for creating a picture wall as you can get several from the same theme and they go together really well. I chose the Beautiful Reasons print with an uplifting slogan to remind me to find gratitude on tough days. It’s on my bedroom wall  and really made a difference to my mental health when I spent over a month in bed recovering from COVID. All prints are printed to order and posted in a strong cardboard tube so arrive pristine. The card stock is good quality and the print finish is top notch with great sharpness and depth of colour. Prices vary according to size (mine is A3, £26.99) and delivery is free. Get 15% off with code RGR15. Hidden Prints is a UK small business, last UK order date for Christmas is one week before Royal Mail cut-off.   Goals Diary 2023 from BusyB Diaries are indispensable, especially to keep track of medical appointments. BusyB has a wide range of gorgeous diaries, calendars and gifts, so you’re bound to find one that suits. I love the sections in the Goals Diary 2023 which make organisation and goal planning so easy. It can be very tough to cope with the limitations of disability, so setting achievable goals can be hugely helpful to mental health. The January to December 2023 goals diary has a week-to-view layout and four handy pockets to help to keep appointment letters and other bits handy. It’s got plenty of space but isn’t bulk or heavy. It measures around 13.6cm x 19cm and weighs under 350g, it’s also vegan friendly. There are sections for setting weekly, monthly and annual goals, as well as tips for goal setting and sections for tracking achievements so you can keep your motivation up! It also comes with plenty of space for notes and ideas, plus a set of gorgeous stickers. It costs £15.99 and there is the option of sticky notes (sold separately) which slot neatly into the back cover. Ethosa Body Wash Sometimes the choice to be environmentally friendly feels like a compromise on quality. Not so with Ethosa which introduces itself as the eco-swap that feels like an upgrade. This award winning body wash has all the luxury and none of the unnecessary packaging or water. A typical shower gel contains 80-90% water and if the container can’t be refilled it’s a massive waste. Ethosa is shower gel which you make up yourself with 3 sachets and tap water. You can choose how much water to add (tailoring the consistency) and how much essential oils to use (tailoring fragrance levels). The refillable dispensers are great for spoonie energy saving too. The starter kit contains everything you need; a stylish silver coloured 400ml refillable pump action bottle, 3 sachets and a konjac body sponge. The 3 sachets contain: i) body wash (the bit that cleans) ii) essentials oils (for fragrance) and iii) preservative (keeps it fresh). The formula contains 6 potent plant-based ingredients, including eucalyptus, bergamot and rosemary. The formula is pH balanced and contains no SLS, parabens, phthalates, silicones, synthetic dyes or synthetic fragrances. I found it very easy to make up and like that I could use a bit less water to make it thicker. It smells amazing and leaves my skin soft and clean; all the hallmarks of a spa product! It’s so easy to swap from my usual shower gel and such a gorgeous product that I will get the refill subscription once this one runs out. Ethosa is a female founded small business, last order dates for Christmas are 10th December. The 1 month starter kit costs £19.90, or £32.90 for a 3-month/family supply. Get 30% off either starter kit with code RRETHOSA30.  Stackers Bed Pocket Stackers have a wide range of items for home and personal organisation. The bed pocket is ideal for those who have limited space or for those who are bed-bound. The bed pocket comes in a children’s version, styled as a mermaid, astronaut, cat, unicorn, shark, elephant, t-rex, and triceratops. The adult version comes in two sizes, small (32cm x 81.5cm x 0.5cms) and large (63cms x 61cms x 0.5cms), both come in grey, oatmeal or blush colourways. They are made of vegan leather and velvet. The top flap slots underneath your mattress so they are suitable for use with all types of bed frame. I chose the large pocket in oatmeal have found it indispensable! It has two large pockets, 4 smaller pockets and two charging cable loops. I can keep everything I need in it, from my ipad, magazine and journal, to medicines, remote controls, pens, eye mask, tissues and cosmetics. It keeps my bedside cabinet free of clutter and best of all everything is in super easy reach making it ideal for low energy days. It looks stylish too and goes with other Stackers oatmeal items in my room. If only all disability aids and adaptations could look so attractive…     CORREXIKO Marine Collagen Collagen has been a buzz word in wellness for a few years now. Scientific studies show that collagen can improve skin elasticity and hydration, plus reduce the visibility of aging as well as contributing to strong bones, joint repair and stronger hair and nails. Not all collagen is the same, so choose high quality and efficacy to reap it’s benefits. Correxiko powder is ethically sourced and high-quality marine collagen that has been double-hydrolysed for maximum effectiveness and better absorption. Correxiko is sourced from wild-caught, unfarmed fish (in pristine Arctic Canadian waters) and uses only the fish skin, which has the largest concentration of collagen. Fishing in the Canadian Arctic is highly regulated with strict quotas. As the collagen is derived as a by-product of the fishing industry (so might otherwise go to waste) it’s the most sustainable, eco-friendly source of collagen. I’ve found it’s made my hair and nails stronger after just a couple of weeks, I’ll be buying some more in the hope it will lessen my joint pains too. The powder is unflavoured and can be added to water, juice, smoothies etc. Correxiko recommend a loading dose of 2-3x 10g per day (10g = one level tablespoon) then reduce to 10g once or twice per day. A trial pack (14 day supply) costs £19.99 (one off) or £17.96 by subscribe and save. A 42 day supply is £39.95/£35.96, larger packets and capsules are also available. Doctor A Cosmetics Doctor A Cosmetics create plant powered skin care packed with nature’s most effective ingredients. The paraben free and cruelty free formulas use ethically sourced ingredients and are naturally vegan. The range includes day and night moisturisers and a facial oil. Each comes in a beautiful butterfly lid box so it’s ready to gift. The full range is reviewed here. The Full Range: The Natural Vitamin C Brightening Moisturiser  (£28 for 50mls) contains squalene, glycerine, plant extracts and vitamins A, C and E. These protect the skin from pollution damage, reduce pigmentation, brighten and even skin tone, and reduce signs of ageing. Suitable for all skin types including sensitive (avoid eye area). I love this cream as it adds moisture but doesn’t weigh my (combination) skin down. My skin has become brighter and more even with only 3 weeks use. The Intensely Exotic Repairing Night Moisturiser (£28 for 60mls) nourishes and soothes dehydrated skin. Packed with hyaluronic acid, squalane, mango butter, grapeseed face oil, red raspberry face oil and plant powder. This moisturiser is ideal for dry skin (avoid eye area). This cream is rich and smells beautiful, it’s not something I’d use every night but 2-3 times a week. My skin has become drier since we’ve had the heating on and this moisturiser has made a difference. The 24k Gold Royalty Facial Oil Treatment (£19.99 15mls) will leave skin looking healthier and younger with an improved complexion. It contains argan face oil, coconut face oil, castor face oil, rosehip face oil, grapeseed face oil, bergamot face oil and real 24K carat gold leaf. These ingredients provide anti-aging properties and can be used on acne scarring, pigmentation and fine lines. Suitable for all skin types (avoid the eye area) and can be used as a stretch mark oil too. Perfect as an ultra-luxe treatment step in an at-home facial. I think the gold is purely decorative, but it does make it feel extra special! Get 10% off all items with code: take10. Doctor A is a British Asian female founded small business; all products are made in the UK. Last UK order date to arrive for Christmas is December 22nd. Snooze Foundry Silk Pillowcases Snooze Foundry sell a range of silk pillowcases including a vegan one, in a variety of styles and colours. They also stock other products to aid sleep. There are lots of benefits to a silk pillowcase; they’re naturally hypoallergenic, temperature regulating and won’t dry out your skin and hair while you sleep the way cotton does. As someone who unfortunately spends more time in bed than I’d like, a silk pillow case makes the experience more bearable. I received the high thread count pillowcase in sea blue and mulberry silk one in gold. The mulberry silk pillowcase is Snooze Foundry’s best selling product and it’s easy to see why! It’s silk on one side and lyocell on the other (elegantly done with a piped edge) making it excellent value for money at just £19.50 (currently on sale). I find it soft and luxurious to sleep on and it’s well-made. It’s fab to wake up without my skin feeling dry or a map of creases on the side of my face. It washes well in the machine on a cool handwash setting with appropriate detergent (I use woolite) and similarly delicate items. The comfort of this pillowcase and ease of washing makes it a game changer for me: I will be swapping my cotton pillowcase for this permanently. The high thread count pillowcase (£38, 22 Momme silk) has both sides in a thicker silk and closes with side zip. I find it very comfortable and it also stopped my head from overheating. It feels like the last word in luxury! It can also be washed in the machine (as above), iron silk pillowcases on a cool setting, do not tumble dry. They should be air dried out of direct sunlight to prevent the colour fading. Use this link and code ROSEGOLDREPORTS to get 5% off all orders, including sale. Conclusion to the Christmas Gift Guide 2022 I hope you’ve enjoyed this year’s guide. Do any of these make your list? Let me know in the comments below. If you’re in need of further inspiration, check out last year’s gift guide too! [...]
16 July 2022Aids and AdaptationsIntroduction to How to Survive a Heatwave Welcome to this post on How to Survive a Heatwave. A state of emergency has been declared in the UK as the Met Office has issued a red weather warning for extreme heat. Temperatures of up to 40oC are expected next week on Monday and Tuesday. This is the first time ever, that a red warning has been issued for temperature. The Met Office advises that there will be population-wide adverse health effects. These are not limited to those most vulnerable to extreme heat and can lead to serious illness or danger to life. In this post, we focus on spoonies with dysautonomia symptoms and cover: Why heatwaves are challenging for spoonies How to keep your environment cool How to keep yourself cool My no.1 tip! Planning for bedbound spoonies Signs of heatstroke Why Heatwaves are Challenging for Spoonies Heatwaves can be more of a health risk to some groups of people. Specifically, the very young, elderly people and those with underlying health conditions. According to the NHS most at risk are people with heart or lung conditions, diabetes, kidney disease, Parkinson’s disease, some mental health conditions, people who are bed bound, those with drug or alcohol addictions, or with Alzheimer’s disease. How to Survive a Heatwave with Dysautonomia People with dysautonomia also find extremes of temperature challenging. Dysautonomia is a disorder of autonomic nervous system, this can include difficulties with thermoregulation. Thermoregulation is the body’s way of regulating it’s own temperature, for example sweating to cool itself down. Dysautonomia symptoms can be made worse by heat, especially if there is insufficient sweating. The opposite can also occur; poor circulation caused by low blood volume or blood pooling can cause cold intolerance. Chronic conditions which can include dysautonomia symptoms include: Diabetes Parkinson’s disease Multiple sclerosis Rheumatoid arthritis Lupus ME/CFS Sjogren’s syndrome Sarcoidosis Crohn’s disease, ulcerative colitis Whilst much of the advice in this post is generally applicable we focus particularly on spoonies with dysautonomia. How to Keep Your Environment Cool Making the effort to keep your environment cool will help to keep you more comfortable. Especially, once the heatwave is in it’s 2nd or 3rd day onwards. It’s best to keep windows closed and curtains/blinds drawn during 10am to 6pm. Air out your home early morning or in the evenings. Some people like to keep their windows open all night which helps the walls to cool too. Obviously consider security if you’re planning to do this. If you can, stay in the coolest environment possible, either at home (find the coolest room) or a shady spot in your garden.  In the UK the hottest part of the day is 11am to 3pm so it should be cooler indoors then. If you’re one of the lucky few with air conditioning – enjoy! Others might consider buying a portable unit or the personal (table top) units which take a filter you freeze first. Bear in mind the smaller the unit the less of an effect it will have and those with water will make the air more humid. There are a lot of factors which affect your home’s temperature (type of building materials, which direction it faces, whether it’s terraced or detached etc) so use thermometers to find the best spots at different times of day. A domestic thermometer is about £4, digital ones a bit more. There are also digital weather stations which come with an indoor and outdoor thermometer. It’s best to avoid travel and exercise altogether; instead save your energy for your body to cope with the heat. If you must travel or exercise, avoid it during the hottest times of the day. How to Keep Your Yourself Cool The best clothing is loose, light and natural such as a thin cotton. If you’re going outside don’t forget a hat and sunscreen. Make sure you keep hydrated, the best thing to drink is water. Keep caffeinated and alcoholic drinks to a minimum. Eating several smaller, lighter meals throughout the day will keep you cooler than a few larger, heavier or richer ones. Choose foods with a high water content to keep your hydration up such as fruit or salads. Many people find fans helpful, they’re good for evaporating sweat from skin to keep us cool. There’s a huge range available. E.g. personal ones you wear on your neck or hold in your hand and larger ones such as desktop or freestanding. The more sophisticated ones are designed to be faster, quieter and come with automatic timers or remote controls. Prices vary according to size and capability. My no.1 tip This is the best tip I’ve learned for instantly cooling you down if you’re too hot. Cooling down your feet will cool your whole body! Our feet play a vital role in regulating our body temperature. Like our hands, they have a large surface area and lots of blood vessels. So, keeping them cool will stop you from over heating. A clever way to give the body an instant cool down is by dipping your feet in cold water for a couple of minutes, putting them on an ice pack (or hot water bottle filled with ice cubes) or putting on socks from the freezer. If you have the energy, then a tepid bath or shower can also help. How to Survive a Heatwave: Extra Tips for Bedbound Spoonies I know from experience that being bedbound during a heatwave is truly horrendous. And when symptoms are bad we often can’t think clearly. So it pays to plan ahead! Heatwaves are typically forecast in advance so being prepared is possible. Make a plan for what you need and who will be available to help you. I’m sharing mine below but everyone is different so adapt accordingly. You may need to stock up on foods which you can tolerate, cushions to help with positioning, fans and gel packs, extra pain relief or other meds. Make sure your meds are in a cool place too; many medicines need to be stored below 25C but not all can be refrigerated (check individual labels). My plan: Large supply of water in small easy-to-lift containers, kept in a little ice bucket to keep it cold Gel pads for sliding into my pillowcase (2 on rotation so one is in the fridge whilst I’m using the other). Black out blind and curtains for the window, lamp giving soft lighting (as substitute for daylight). Thin cotton sheet instead of a blanket Gel eye mask (kept in fridge when not in use) and lots of cotton socks in the freezer A free standing fan (takes a while to find ideal distance, speed and angle) Lots of cucumber, tomato, watercress, watermelon, pineapple and strawberries for snacks Signs of Heatstroke It’s likely that a heatwave will cause an exacerbation of symptoms. It’s important to differentiate that from heat exhaustion which can turn into heatstroke. The NHS lists the main symptoms of heat exhaustion as: a headache dizziness and confusion loss of appetite and feeling sick excessive sweating and pale, clammy skin cramps in the arms, legs and stomach fast breathing or pulse a high temperature of 38C or above being very thirsty If someone experiences these symptoms, they need to be cooled down quickly. The best way to do this is to: move them to a cool place, lie them down and raise their feet slightly, get them to drink plenty of water (sports or rehydration drinks are OK) and cool their skin (spray or sponge them with cool water and fan them). You can also put cold packs around the armpits or neck. They should start to cool down and feel better within 30 minutes. If they aren’t better after 30 minutes, the NHS advises calling 111. You should call 999 if a person has heatstroke and has any of the following symptoms: fast breathing or shortness of breath a fit (seizure) loss of consciousness not responsive If the person looses consciousness whilst you’re waiting for an ambulance, put them in the recovery position. Conclusion to How to Survive a Heatwave Remember to take care of yourselves and of those who are vulnerable. Also, don’t forget your pets; they need hydration and shade too. Don’t take dogs for walk on hot pavements, it could seriously harm them. These are all our best tips for how to survive a heatwave. Do you have any favourite tips for keeping cool? How to you plan to cope with heatwaves? Let us know in the comments below. If you’ve found this post useful, you might like some of the others in the Aids and Adaptations part of the blog.     [...]
3 July 2022NutritionIntroduction to How to Choose a Supplement If you’re wondering how to choose a supplement, you’re not alone. The global market for dietary supplements is valued at over 151.9 billion (USD, 2021). This is obviously a huge business, however, not all supplements are created equal. Some supplements are excellent and others effectively useless. The sheer variety on offer is seemingly limitless. So, how to choose the best ones? Here, we outline our 5 key questions to ask when choosing the best supplement for you. They are: Do I need it? Is this the most bioavailable form? Is the dosage right for my needs? Are the ingredients good quality? If it’s a blend, do the ingredients complement or compete? We also briefly look at a couple of other aspects which can make the choice easier. Do I need a supplement? Most of the nutrition the body needs, we can get from a healthy, balanced diet. The exception is Vitamin D, some comes from food but the majority forms from sunlight on skin. During autumn and winter, the sun isn’t strong enough for us to make Vitamin D (in the UK) and we are unlikely to get enough from food. So, the NHS recommends a Vitamin D supplement during autumn and winter. Those who are housebound should discuss with their GP whether they need a year-round Vitamin D supplement. Pregnant women, those on restricted diets, children under 5, and those with a diagnosed deficiency may also need supplements. For further information, see this NHS page or speak to your GP. If you feel you could benefit from a supplement, or your GP instructs you to take one, read on to see what you need to consider when choosing. Is this the most bioavailable form? Many supplements come in different chemical forms. This is particularly true of minerals. Which form is right for you will depend upon why you need it. It’s important that the form is also highly bioavailable (meaning it’s absorbed well by the body) otherwise you won’t get the benefit. For example, Magnesium comes in more beneficial forms when it is chelated (joined with a carrier) such as: citrate, taurate, malate, glycinate, chloride, carbonate. And less beneficial ones: sulphate, glutamate and aspartate. Magnesium taurate is best for people with cardiovascular issues as it prevents arrhythmias and damage caused by heart attacks. Magnesium carbonate turns into magnesium chloride when it mixes with the hydrochloric acid in our stomachs, so it’s useful for those with acid reflux and indigestion. The most common form available in pharmacies is magnesium oxide, but it is non-chelated and has poor bioavailability (absorption) compared to those listed above. Do research to ensure you know which form is best for you, or ask for advice from your pharmacist. Is the dosage right for my needs? First, you need to know how much of each vitamin or mineral you need. Check with your GP if you receive advice to supplement, or look at the tables in Public Health England Dietary Recommendations. Tables 4 and 6 show the amount of vitamins and minerals needed by adult men and women. How much of each vitamin, mineral or other active ingredient a supplement contains is given on the packaging. The types of units can vary, but there are 3 main types: Milligrams (a milligram is 1 thousandth of a gram) usually appear as mg. Micrograms (a microgram is 1 millionth of a gram, 1,000 micrograms is equal to 1 milligram) usually as μg or mcg. International Units, typically given for vitamins A, D and E, usually appear as IU. (the conversion of milligrams (mg) and micrograms (μg) into IU depends on the type of vitamin). For some supplements you might need to take more than one tablet or capsule per day. If you’re needing to take a large number to meet your required dose, check if a high strength version is available. But, more isn’t necessarily better as it’s possible to experience serious adverse reactions from taking too much of a supplement. If you are supplementing because of a GP diagnosed deficiency, your GP should re-check your levels after you’ve been supplementing for a while. This ensures the supplement is working and the dose is appropriate. Are the ingredients good quality? Spotting a quality supplement can sometimes take a bit of practise. Often, regular use leads to finding favourite brands. Here are some tips on spotting the better quality supplements: Read the ingredients: are there things in there you don’t recognise? Low quality supplements often contain lots of additives (some can even block your body from absorbing the active ingredient!). Check the company website for details of their sourcing and manufacturing processes. If the brand doesn’t have a website or their website is not transparent that could be a red flag. The best brands will have nutritionists or pharmacologists advising on sources, forms and blends. Is it too cheap to be good? Price isn’t always the best indicator of quality, but it’s worth knowing what a typical price is for a similar quantity and strength of that supplement. If it’s comparatively cheap it’s likely reflected in the quality of the ingredients. On this blog I’ve reviewed some of my favourite supplements from brands I trust. This includes: Unbeelievable Health’s blends for Sleep Support and Immune Formula, Better You’s oral iron spray, and probiotics from Cytoplan and Bioglan. If it’s a blend, do the ingredients complement or compete? A daily multivitamin seems like the perfect solution. One quick, easy pill and you get all the benefits. Except, sadly, it’s not that straightforward. Some combinations of vitamins and minerals are complementary, whilst others compete with each other. Good Supplement Groupings There are some well established mineral and vitamin pairings which maximise the absorption of the mineral. For example if you need an iron supplement, taking it with Vitamin C (e.g. orange juice) will help your body to absorb the iron. Similarly, taking vitamin D alongside calcium will help your body to absorb the calcium. You might find that if you buy a calcium supplement it also contains a bit of vitamin D to ensure you get the full benefit. There are also supplements containing groups of vitamins, minerals and other actives which don’t interact or compete with each other. These are usually blends tailored to a particular problem e.g. energy, digestion, sleep, anxiety etc. These will contain a variety of ingredients targeted at solving a problem without impacting on each other’s absorption. Bad Supplement Groupings Some vitamins and minerals compete for the same receptor sites in the body. As the number of receptor sites is limited, it means only some of the minerals or vitamins get absorbed. The remainder pass uselessly through the body. Some examples of competing pairings are: B1 and B2, B5 and B7, magnesium and calcium, zinc and copper. It’s best to take these pairs separately and space the doses so each gets maximum absorption opportunity. For more information on competing groups see this post from Calton Nutrition. Other Considerations for How to Choose a Supplement These are our 5 key questions for how to choose a supplement, however, they’re not the only ones that matter. Depending on your personal circumstances there may be other factors you need to consider. For example, shape and size (if you have trouble with swallowing), how they need to be stored (some might need refrigeration), how easy it is to open the container (a consideration for you if you struggle, or if you don’t want children taking them), how much they cost etc. Have you thought about how to choose a supplement? What usually guides your choices? Let us know in  the comments below.   [...]
29 June 2022BalanceGender Health Gap Introduction Welcome to this post about the Gender Health Gap. This is an issue which is currently receiving much-needed attention. So we’re going to explore it in this post. Specifically, we look at: What is a gender health gap? Does the UK have a gender health gap? Why does this gap exist? What are some real examples? Is change happening? What is a Gender Health Gap? Put simply, the gender health gap is when one gender experiences poorer health outcomes. These outcomes can relate to a variety of factors. Some examples are: disease prevalence (i.e. how likely one gender is to develop it), healthcare access, correct diagnosis, effective treatment, long term prognosis etc. Often a gap will exist for several of these factors, so this creates a big difference between the health of males and females. It is similar to the gender pay gap, where salaries and earning potential differ based on gender. Does the UK have a Gender Health Gap? Many countries have a gender health gap, some bigger than others. In some countries men are disproportionately affected, in others it’s women. Male v Female In the UK, we have the largest female health gap in the G20 (world’s 20 biggest economies) and the 12th largest globally. This is due to a number of factors including misdiagnosis of women’s symptoms. Women in the UK make fewer visits to the GP, receive less health monitoring, and take more potentially harmful medication. Suicide is the biggest killer amongst men under 40 years old and so remains an important male mental health issue. Mental health problems have stabilised amongst men, however; their prevalence is increasing amongst women. Intersectionality Looking at intersectionality (where identities overlap) shows that the not all women have the same experience. This is because factors such as race also play a part. For example, black women have the highest rate of death in childbirth compared with Asian and white women, whereas white women have the lowest rate. Health outcomes are also poorer for LGBT and disabled people. See our post on health impacts of loneliness for disabled people. Why Does This Gap Exist? Award winning author Caroline Criado Perez argues that this gap has existed since medicine was invented in Ancient Greece. The female anatomy was then perceived as a mutilated version of the male anatomy. Hysteria (considered a female condition) resulted from lack of impregnation and women were seen as lesser beings. You can read more in her book Invisible women: Exposing Data Bias in a World Designed for Men. Surely this patriarchal world view has changed in modern times? Despite medicine now viewing female anatomy as different rather than mutilated, women remain marginalised. In medical school, students are taught to recognise signs and symptoms for diseases as they appear in men. As a result, many women experience misdiagnosis because they have different symptoms. For example, one study found that women are 50% more likely to be misdiagnosed after heart attack. Moving from diagnosis to treatment. Women are more likely to receive the wrong type of medication or an inappropriate dose. The majority of clinical studies are carried out on men, because it’s easier to account for the potential influence of monthly hormonal fluctuations where there aren’t any. This means that resulting treatment is tailored to men not women. When it comes to dosage, women are often treated as ‘smaller men’ and might be given a slightly smaller dose. Women’s physiology is different to men’s and so a different drug altogether might actually be more therapeutic. What are some real examples? Trigger warning: the examples below include independent public enquiries where women were harmed by medical professionals. A debate on the gender health gap took place in the UK House of Lords last year. Three independent reports and inquiries highlighted situations where mostly women have suffered harm because of poor healthcare. The Paterson Inquiry report investigated surgeon Ian Paterson. In 2017,  he was convicted of wounding with intent and sentenced to 20 years in prison. He subjected more than 1,000 patients (mostly women who’d found a lump in their breast) to unnecessary and damaging operations over 14 years. First Do No Harm Report (a.k.a. Cumberlege report) is investigated the safety of medicines and medical devices. It focused on three medical interventions. An epilepsy medication (sodium valproate) and a hormone pregnancy test (Primodos), both were found to cause harm to unborn children when used during pregnancy. The third, Pelvic mesh is used to treat pelvic organ prolapse and urinary incontinence. The report highlighted the unnecessary suffering of women and multiple, systemic failings in healthcare. The Saving Lives, Improving Mothers’ Care Report details maternal mortality rates. Between 2016 and 2018, 217 women died during or up to six weeks after childbirth from causes associated with their pregnancy. There were disparities based on race: among every 100,000 women giving birth 34 Black women, 15 Asian women and 8 white women died.  The report found that women with complex and multiple problems were prevented from receiving the care they need. Is change happening? In March 2021, a Call for Evidence sought views on the first government-led Women’s Health Strategy for England. Almost 100,000 responses were received detailing women’s experiences. This resulted in a report outlining the UK government’s vision for a women’s health strategy. The Women’s Health Strategy report outlines a desire to offer equal access to effective care and support, prioritising care on the basis of clinical need and not of gender. It highlights that it will take time to undo “decades of bias”. Alongside the report’s publication, an announcement was made detailing a Bill which would cut the cost of repeat HRT (hormone replacement therapy) prescriptions. These are typically used by menopausal women. The HRT Bill was introduced to the House of Commons in June 2021 but has not yet been enacted. Conversely, there is a serious shortage of every brand of HRT in the UK. This has had a massive impact upon the physical and mental health of thousands of women. Whether the report and political will actually leads to meaningful change for the health care outcomes of British women remains to be seen. What are your views or experiences on the Gender Health Gap? Do you think health outcomes for women in Britain will change in the next decade? Let us know in the comments below.       [...]
19 June 2022Aids and Adaptations5 Best Bathing Aids Introduction Having an energy limiting chronic illness makes it hard to take a bath or shower. It’s an activity which can cause a lot of fatigue and require significant recovery time. There are aids available which make it more accessible and less energy-intensive. In this post I share my 5 best bathing aids, these are my absolute essentials! I share the types of aids I use but there are a lot of models to choose from. Everyone has individual needs, so it makes sense to work out which ones are right for you. I hope this post will provide you with some ideas though! I’ve included: Bath board Bath Water thermometer Bath cushion Long handled brush Grab rail Bath board Having something to sit on in your bathroom is a game changer! Bath boards are not permanently fixed to the bath so can be (fairly) easily removed and replaced. They come in different sizes too, the one pictured has 4 slats but you can also get 6 slat ones. I use my bath board a lot. The basin is quite close to the bath so I can sit on the bath board and brush my teeth. ME often comes with a side order of POTS, so standing up for 2-3 minutes is impossible. A stool works just as well if your sink is further away. I also use my bath board for taking a bath as it makes it easier to get in and out. And for showering (again standing to shower is impossible). If you have a screen ensure you have enough clearance to close it with the board in place. If you have a curtain, close it and then loosely fold under the board before pushing the board firmly into position. These cost £30-40 depending on size (all the disability aid retailers have them, as does Amazon). If you have a needs assessment from the local authority (council) occupational health team, it’s the sort of thing they can usually provide. Bath stools are another option, these can be height adjustable and some have a swivel seat. Tip: if you’re buying one, make sure you measure the bottom of the bath and compare it with the footprint of the stool. The sides of baths are typically narrower toward the bottom compared with the top edges. Stools range in price from £30 to £60 depending on whether they have arms and/or a backrest etc. Bath Water Thermometer Temperature dysregulation and very slow reaction times mean I’ve got into bath water that’s far too hot. I sit in it wondering why my heart is racing and my skin is lobster red *facepalm*. A baby’s bath water thermometer is the perfect solution. It’s especially useful as I don’t run the bath myself, my carer does it for me. So they can be confident the water is a safe temperature for me. This one pictured is from a brand called Aycorn and costs around £15 (Amazon). Bath cushion I have trouble holding my head up without support. Leaning it against the bath is uncomfortable. So, a waterproof memory foam bath cushion makes a huge difference. There are suckers on the back so you can adjust until you find the ideal position. They’re also really easy to clean under the shower and hang up to dry. I got mine on ebay for about £10, but there are lots of online retailers which stock them. Larger ones with a back rest and neck roll are also available for around £20.   Long Handled Brush I get help washing my hair as I have difficulty lifting my arms. For the rest of my body I find a long handled brush to be useful for reaching without the need to bend or stretch. My skin is sensitive so soft bristles are essential. Also it needs to be a lightweight brush that won’t tire my arm out. I love the Eco tools brush (pictured) which costs just £5.99. It’s one I have re-purchased I like it that much!     Grab Rail Grab rails are handy (literally… sorry, couldn’t resist!). They can make it much easier to get in and out of a bath or shower. They’re also useful for when you get dizzy or lose your footing. The grab rail pictured here is a non-permanent one, it’s fixed to the tiles by strong suction cups. Grab Rail Bathing Aid: Temporary v Permanent The non-permanent type is great for deciding where a grab handle or rail is best located. You can move them around and adjust accordingly. Once you’ve decided the spots which are most helpful for you, you can get permanent ones fixed there instead. Don’t get rid of the non-permanent ones though, they’re useful to take if you’re away from home e.g. staying at a friend’s or in a hotel. Grab rail prices vary depending on the size, type and material. As a ball park, the suction ones are about £10. The permanent ones typically cost £20-40, with plastic usually cheaper than metal. Again, this is the type of aid which may be provided by your local authority as part of a care package following an occupational health assessment. 5 Best Bathing Aids Conclusion These are my top 5 aids for taking a bath. I do also use other aids too (I’ll share in another post). Those severely affected by chronic illness and disability, aren’t always able to bath/shower as often as they’d like. Remember, it’s totally OK to use wet wipes, dry shampoo and the like in between baths or showers. Do you use any aids for showers or baths? Let us know in the comments what you’ve found useful and any top tips! If you’ve found this post useful, you might like to see the other posts in the Aids and Adaptations section. [...]
4 June 2022BalanceChronic Illness, Disability and Loneliness (Part 1): Introduction Loneliness is this year’s theme for mental health awareness week. Loneliness is a widespread problem, which doesn’t just affect the elderly. Those with chronic illness or disability experience more loneliness than the general population. Chronic illness, disability and loneliness is a big topic. So, here it’s broken in two blog posts. Part one looks at: chronic illness, disability and mental health what is loneliness? my own experiences Part two covers: types of loneliness health risks of loneliness how to access help Chronic Illness, Disability and Mental Health Disabled people experience more mental health difficulties than non-disabled people. Both anxiety and loneliness are more common for disabled people. Disabled people whose impairments affect them more severely have lower wellbeing ratings than disabled people whose impairments affect them less severely. Below is a table of average scores for both anxiety and loneliness among disabled and non-disabled people. This table shows that 43% of disabled people experience anxiety, compared with 27% of non-disabled people. It also shows figures for ‘often or always lonely’ 13% for disabled versus 3% for non-disabled. These differences in experience are very large. Loneliness is more than 4 times more common amongst disabled people compared with non-disabled people. The data comes from the UK Office for National Statistics. There are similar data disparities between disabled and non-disabled people for other well-being metrics, including for life feeling ‘happy’ ‘worthwhile’ and ‘satisfying.’ If you suffer from anxiety, you may find our post on 5 Top Tips for Anxiety, helpful. What is Loneliness? What exactly do we mean when we say ‘loneliness’? Loneliness is a feeling of lack of companionship or connectivity with others. It’s when we yearn for meaningful social interaction. In short, loneliness is having fewer social relationships than we would like, or relationships of a lower quality than we desire. Sometimes we can be surrounded by people but still experience a disconnect. So it’s possible to feel lonely in social settings. Disabled people and those with complex chronic illness can often be isolated for health reasons. A prime example is shielding during the pandemic. Another is having less time for social interaction as time is taken up by treatments. Or, being housebound with limited ability to receive visitors. There are of course other reasons too. Those who experience loneliness and isolation can later find it harder to connect with others. Some then experience depression or social anxiety as a result. It becomes a vicious cycle. My Experiences with Chronic Illness, Disability and Loneliness I’ve lost most of my friends since becoming sick nearly 5 years ago. More recently, I spent two and a half years shielding due to covid and only go out now for medical treatment. In the last 6 months, I’ve had two (socially distanced) visits in my garden. I can only manage to spend around 60 minutes with a friend per visit (I experience so much fatigue, I need a day or two to recover). So despite having online friends (whom I value massively) I do sometimes feel lonely. It’s completely different to be in someone’s company IRL than to share an online space with them. I also can’t do groups, either online or in person. This stems from the additional energy needed to cope with the sensory overload of more than one person speaking at a time. How to Loose Friends and Alienate People Being chronically ill or disabled means I might need to cancel or reschedule last minute as symptoms can be unpredictable. A lot of people find that unpredictability inconvenient. Some have difficulty seeing me (their previously healthy and active friend) struggle with basics like walking, eating or memory. It’s something they don’t want to witness. Especially because my illness came on for no discernible reason/cause, meaning it could happen to anyone. No one wants a regular reminder of the fragility of their own existence. Finally, there are those who don’t find value in the friendship anymore. Perhaps they originally knew me professionally, or valued having a contact in London with a spare room. So, I’m no longer a useful person to know. It’s very difficult to loose friends when you’re going through life-changing illness. It’s a time when you should be able to reach out for more support. Although, it can also be hard maintaining friendships when you’re often too sick to stay in regular contact. I acknowledge that there is difficulty navigating the situation on both sides; it’s not easy helplessly watching a friend suffer. But it’s so difficult not to take the losses personally. So hard to not let them affect self esteem during a time when your self esteem is already taking a battering (loss of ability, job, independence, identity etc). So the couple of friends I’ve managed to hang on to, I treasure them more than ever. And it’s made me reflect deeply on what it was about me, that made me seemingly so easy to abandon in the first place. Do you have any experiences of loneliness? What caused the loneliness and were you able to address that? If you feel able to share, feel free to start or contribute to the conversation in the comments. Part 2 of Chronic illness, disability and loneliness will be up in a couple of weeks. [...]
7 April 2022NutritionIntroduction 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 recipe is a way to take two helpful energy boosting supplements: D. Ribose and Bee Energised. In this post I will briefly explain the benefits of matcha and each supplement. Then I will share my recipe for energy boosting match latte.   Key Energy Boosting Ingredients What is Matcha and how does it help? Matcha is a special type of green tea. It’s more potent with greater levels of antioxidants and caffeine compared to standard green tea. Scientific studies show it can help protect the liver, improve heart health, and assist in weight loss. It has also been shown to improve brain function and may help prevent cancer. Matcha is more expensive than standard green tea, but you only need a small amount to make a drink. For more information see this Healthline article which has lots of interesting details. What is Bee Energised and how does it help? Bee Energised is a supplement created by nutritionists. It combines the highest quality nutrient-rich ingredients which have a proven history of benefits in supporting energy and focus. These are the sorts of things you wouldn’t normally get much of in a typical diet. These powerhouse ingredients include: organic Bee pollen, organic matcha tea, organic spirulina, Siberian ginseng, organic green tea leaf, rosemary extract, rose hips, plus vitamins B6 and B12. This is a great supplement for when you’re run down. As the benefits of taking Bee Energised build with time, regular use helps with ongoing fatigue and lethargy. You don’t have to pop them into a cool matcha drink, you can swallow them with water, or sprinkle them onto yoghurt, juice or smoothie (anything really as long as it’s not hot). I find these really good for both physical and mental wellbeing; they bring both energy and clarity. The bee pollen also helps with hay fever symptoms as an added bonus! For more info see the Unbeelievable Health website, you can also buy on Amazon where it’s around £11, or under £10 with subscribe and save (my recommended option so you don’t forget to re-stock!). What is D. Ribose and how does it help? Ribose is a sugar which is made by the body and used for many processes in the body. D. ribose is a supplement often used by people with ME/CFS, fibromyalgia and heart disease. It’s also popular with athletes who want an energy boost. Ribose may help with muscle fatigue in people who experience energy impairment on a cellular level. It may also provide extra energy to the heart during exercise in people with heart disease. It is also used for some other conditions. To date, there is not yet good scientific evidence to support it’s use with these conditions. For more information on potential side effects, dosing and user reviews, see this WebMD page. I buy my D.Ribose directly from Bulk (they often have promos) or from Amazon. Energy Boosting Matcha Latte Recipe This recipe is super easy to do! If, like me, you’re a low energy spoonie, opt for battery powered matcha whisk like this one from Aerolatte. There are just 6 simple steps 1: Place one teaspoon of matcha powder into your cup. 2: Add one tablespoon of freshly boiled water and whisk into a paste. 3: Stir in one teaspoon of good quality honey. 4: Top up with your favourite type of milk (can be dairy or plant based), add ice if you like. 5: Sprinkle on the contents of 2 Bee Energised capsules. 6: Add one scoop of d.ribose (Bulk provide a 5g scoop in each bag) and stir well. Enjoy! There’s also a 30 second reel of this recipe on our instagram, bookmark there for future reference. Have you tried this recipe? What are your favourite energy boosters? Let me know in the comments below. If you’ve enjoyed this post, you might like our other Nutrition Posts or if you’re looking for reviews on supplements click here. [...]
13 March 2022ReadingIntroduction to Green Mother by Dr Sarah Myhill and Michelle McCullagh with Craig Robinson Welcome to this blog post on Green Mother. The full title is Green Mother: Families fit for the future by Dr Sarah Myhill and Michelle McCullagh with Craig Robinson. Published a few weeks ago by Hammersmith Books, my thanks to the publisher for a copy in exchange for an honest review. It’s available as both paperback and ebook. Green Mother Review I’m a long standing reader of Dr Myhill’s work. I trial and follow a lot of her advice for my ME. Her work is always clearly explained and includes the science which underpins it. I think that’s very important, not everyone wants to read the science (especially with brain fog), but it should be there to show evidence base.  Green Mother covers health for children, from pre-conception, through birth to adulthood. There is advice for involving the whole tribe (after all, ‘it takes a village…’) and great resources from protocols to recipes. Content Green Mother covers the whole journey of childhood. There are chapters on reducing risks pre-conception for both parents, fertility and assisted conception. Parents’ key concerns are covered with chapters on pregnancy, childbirth, breast feeding and weaning, sleep and crying. Developmental areas are included too, with chapters on immunity, ailments, emotional confidence and learning. Finally, there are appendices with protocols for foundation of health, chronic and acute problems and some recipes. There is also a glossary, references and further reading suggestions. Style As ever the writing style is engaging and accessible. It’s peppered with quotes and observations. Personal anecdotes are given in boxes so as not to distract from the main text. Each chapter is broken down with subheadings so if you fatigue quickly you can read it section by section. The illustrations by Michelle McCullagh are a visual treat and make reading the book feel more attainable if you’re struggling with symptoms. Cover Synopsis for Green Mother by Dr Sarah Myhill and Michelle McCullagh A no-nonsense guide to pregnancy and child rearing for those who want to reap the advantages of modern Western life while avoiding its pitfalls “Modern Western life is eroding the physical, mental, emotional and spiritual health of our children so seriously that the very survival of our species is threatened. More children than ever are fat and fatigued, learning disabled and emotionally damaged, and the responsibility lies with us. We are killing with kindness in an attempt to provide a stress-free, safe environment for our most loved.”-Sarah Myhill and Michelle McCullagh Green Mother is for those who want the best of both worlds-to reap the advantages of modern Western life but recognise its pitfalls. This book aims to give parents, would-be parents, grandparents, siblings and all members of the ‘tribe’ that surround a new baby the theoretical and intellectual imperatives to tread this difficult path, the practical day-to-day realities that must be overcome, and the encouragement to do so. The book is beautifully illustrated with 50 of Michelle’s sketches. I hope you’ve enjoyed this review. If you’d like to see more of our health book reviews, please see our Reading section. We’ve recently covered No Pills, No Needles (reversing diabetes and hypertension) and The Way Out (healing chronic pain). [...]
7 March 2022BalanceIntroduction to ME/CFS Sound Sensitivity Many people with ME, fibromyalgia and some other chronic illnesses experience sensitivity to light and sound. Both of these stimuli make demands on energy, this energy is used to ‘process’ the sounds and/or lights. Processing helps us to identify what they are and whether they’re an indicator of danger (a loud bang for example). For many people with ME hearing multiple sounds or having too many bright lights is extremely fatiguing. This is because the brain is constantly having to process each one and there is not enough energy left over for other essential needs. This overstimulation often causes symptoms of pain and fatigue. It is rare for such sensitivity to have a positive side effect. Amazingly, I experienced a positive effect from my sound sensitivity, and am sharing this story with others in the ME community. This story was originally published in the Spring 2022 issue of the ME Essential Magazine. Sound Sensitivity Prevents Blaze from Destroying Homes The Nuisance Noise I closed my eyes, digesting my supper is always such a bodily effort. As I lay in my quiet, dark bedroom I noticed a beep…beep…beep. I could also hear the TV downstairs although my parents had the volume low and a neighbour’s washing machine starting the spin cycle. Beep…beep…beep… Since developing severe ME 5 years ago, my sensitivity to light and sound is a constant curse. I hear the quietest things, often with louder things layered on top and find it exhausting. I’d have to gather the energy to get my ear plugs from my bedside cabinet. But something stopped me; this noise was completely new. It didn’t sound insistent like a car alarm, but rather like the battery on something was dying; beep…… beep……beep. I couldn’t think of anything we owned that made that sound, but its persistence was already starting to cause an increase in my symptoms of pain and fatigue. I worried it might not stop soon. It’s four steps from my bed to the door. I leant against the doorframe and concentrated hard. It didn’t sound as though it was coming from any room upstairs… beep……beep……beep. I got my mobile and rang my Mum downstairs to ask for help. Fire! Mum came up and thought it might be coming from outside and opened the window by my bed. Immediately I heard the beeping louder, there was a faint whiff of smoke and a few seconds later my asthma symptoms started. I realised there must be a fire somewhere. I looked around and saw small flames on the floor of my neighbour’s kitchen. That neighbour was away, but my mobile was still in my hand. As I dialled 999 and asked for the fire service, Mum closed the window. They asked what my neighbour’s door number was, it’s a terraced street but brain fog was kicking in from the exertion and I couldn’t remember whether it was up or down from ours. My Mum gave the door number and they advised us to evacuate. With my last bit of energy, I tried to explain I was disabled and bedbound. I collapsed onto the pillows and Mum went to warn the neighbours on the other side. The first fire engine arrived in under five minutes. It was joined by a second plus the Police and rapid response Paramedics. They set up their lights and hoses, and ensured the other neighbours were evacuated. A battering ram was brought in to break down the front door. I pulled myself up to look through the window. One of the firefighters signalled to me; pointing at me and making a phone gesture. I nodded. He started speaking, so with an effort I opened the window to hear him. He said it was safe for me to stay inside for the moment, but he’d come and fetch me if that changed. I closed the window as quickly as I could; the smoke was unbearable. A Different Kind of Vulnerability One of the hardest things I found about becoming disabled is the permanent feeling of vulnerability. Relying on others for basic care needs, having to be spoon fed when I’m too weak to lift my cutlery. I’d always been fiercely independent. I’d been a research scientist doing fieldwork on erupting volcanoes and a reservist for the RAF (including a stint with the Search and Rescue helicopter team). I had been well trained, fit, quick witted and eager to be where the action was. As I lay on my bed crashing from the smoke and the flashing lights, it hit home just how vulnerable I truly was. Being housebound, most ‘threats’ to me come from my own body or my immediate environment. Here was an external threat which may prove difficult to control. I might have to go outside; it would be smoky, cold, there was nowhere to lie down, and there were so many people. I’ve been shielding for almost 2 years (my 1st jab didn’t go so well) so the thought of going out there filled me with fear and anxiety. Aftermath Once the fire was out, the firefighter who’d spoken to me earlier came upstairs to see me. My parents had explained to him my situation. He seemed understanding, noting down my details and making sure that I was feeling OK. I thanked him for letting me stay inside, the last thing I needed was a setback right before Christmas. Only I had heard the death throes of the neighbour’s smoke alarm. It wasn’t as loud as it should have been because the batteries were so low (ironic much?). The neighbours on the other side had, like my parents, been watching TV and not heard it. There was very little fire damage, a few small kitchen appliances would need to be replaced. The smoke damage was greater, but thankfully no one was hurt. If the fire brigade had not been alerted so quickly, it would have been a lot worse. The thought that something positive had come from such debilitating symptoms really cheered me. It’s so rare to find a positive with this disease. In the weeks following as I recovered from the inevitable crash, I reminded myself that I’d managed to do something valuable. Conclusion ME/CFS Sound Sensitivity There are a variety of aids which can help with sensitivity to light and sound. Ear plugs, ear defenders or noise cancelling headphones are popular choices for people with ME/CFS. Our review of ear plugs will be up in the Adaptation section soon. Similarly, black-out blinds, curtains and low level lights (e.g. night lights) can be useful. Do you experience sensitivity to light or sound? Do you have any tips on how to deal with it? Please let us know in the comments below. [...]

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