Tips for staying cool this summer

As we're set to have another heatwave here are some tips on coping with the heat.

1. Drink more fluids than normal
2. Put ice into your drinks
3. Keep a bottle of water/juice in the fridge or freezer
4. Keep sunny windows closed during the day, and open windows at night when the temperature has dropped
5. Keep blinds/curtains closed or partially closed
6. Avoid staying outside during peak times (11am - 3pm)
7. Check what medications you are taking as some can increase your sensitivity to sunlight. If you're unsure call your pharmacy.
8. Wear light and loose fitting clothes
9. Wear a hat when outdoors and apply high SPF sun cream and reapply this every 60-90 minutes
10. Wear UV sunglasses, if you wear prescription sunglasses get a UV filters made on them
11. Put a bowel of ice in front of an desktop air fan
12. Wet a funnel for your forehead or towel and put it around your necka
13. Have cooler showers/baths
14. Spend your day in cooler rooms, especially for sleeping/napping
15. Make you own lollies. You can cheaply buy lolly moulds and fill them with things like fresh fruit juice, smoothies or dilute juice.

How to make your blog and social media as accessible as possible

Accessibility on my blog has always been on my mind, trying to think about accessible aesthetics; making my blog look nice but having a good enough contrast between the text and the background and have easy read fonts. Early on in my blog I also installed a plug-in widget which I'll mention more about below. This also comes from needing to use accessible features myself. I use things like magnification, large cursors, text readout and bigger legible fonts, but I didn't want to make the font huge as I knew this wouldn't appeal to all readers, plus it would lead to a lot of scrolling which is why the plug-in widget is perfect. On my blog the font is fine, but users who do struggle with the vision can have the option of either use their own software or the plug-in widget.

I'm now becoming even more acutely aware of accessibility so I've been looking at moving forwards and improving on accessibility.

So, how can you make your blog and social media more accessible?

Font Size and Colour

Use a clear legible font such as ariel, comic sans, helvetica, verdana or something similar.

Don't make your font size too small.

Have a good clear contrast between your background colour and text colour. Dark fonts against light backgrounds work best.

Plug-in Accessibility Widgets

Add a plug-in accessibility widget. You can find ones for free such as User Way which is super easy to set up and install on your blog via a html code. These plug-in widgets offer features such as the ability to enlarge text, change the contrast, have a reading bar, read the page, highlight links and more.

Headings and Subheadings

Use headings. This helps people to navigate your website more easily and skip through to the parts they wish to read. It also makes your posts more organised.

Hyperlinks

Make hyperlinks clear. Rather than just typing "click here" type for example "check out my page on..." You can also make hyperlinks clearer by having them in a different colour to the main body of text. Plug-in accessibility widgets can also highlight links making them clearer to viewers.

Labelling Links and Buttons

By labelling links and buttons it makes it easier for those using screen reading software or magnification. By doing this readers don't have to press a button without knowing what it is, especially if is a link to another website.

Adding Closed Captions (CC) or Subtitles

Adding CC/subtiles to your videos will greatly increase your viewing numbers. Many people use CC/subtiles who aren't D/deaf or hard of hearing - I'm not but I often use subtitles as I find it helps me understand what I'm watching especially if I'm feeling brain fogged.

When adding CC/subtitles use clear, easy to read simple fonts on an accessible background such as black text on a white or yellow background.

Apps such as Apple Clips (free), Clipomatic (£4.99) and CutStory (unlock record for £1.99) which allows you to make videos which autogenerate subtitles to share on social media such as Instagram stories.

On YouTube you can also add CC/subtitles which also are autogenerated and adding CC to the video title will invite more viewers as the auto subtitles aren't always correct an you can get some odd sentences.

From experience I would say that on YouTube an apps hat autogenerate subtitles to double check and edit the the subtitles to ensure what is being spoken is correct in the subtitles. It also benefits viewers if you add CC which give extra information such as [♫] to indicate to the reader that music playing or you could write [acoustic music] or [background chatter]

Transcripts

If you can't get CC/subtitles an alternative to this is to write a transcript of the video. If you have an audio feature make a transcript and this allows D/deaf and hear of hearing readers of your blog to read what is being said. If their are sound affects add these too, such as [♫] to indicate to the reader that music playing or you could write [acoustic music] or [background chatter].

Audio

If you do want to go the extra mile in terms of accessibility as well as the text of you blog you could if you wish make a recording of what is written to give readers the option of reading or listening to your blog post. 

(This is something I am considering doing as I know which my dyslexia and brain fog mix I'd find listening to a blog post easier than reading but I'd need more energy and work out the logistics first.)

As an alternative to alt text/image descriptions you could make an audio description of the image.

Videos and Audio

Avoid using video and audio that starts automatically. This makes it easier to navigate your blog better. It also makes it more accessible for those who use screen reading software as they have to listen to their screen reader and the audio at the same time.

Alt Text (Alternative Text) and Image Descriptions

Alt text gives a audio description of images to those who use screen reading software.

To make your social media really accessible take a few moments to write alt text. Often, such as on Facebook the automatic alt text that is generated is very poor so you're best editing it yourself.

On your blog you can write an image description such as in the image's caption.

An example of alt text/image description could be:

Example: A wooden worktop with a blue cup and saucer
of coffee next to a notebook and pen.

or...

Image description

A wooden worktop with a blue cup and saucer of coffee next to a notebook and pen.

Summary and Thanks

I hope these tips have helped give you insight and they will help you to make you blog or social media account more accessible, or just make you more aware off different accessibility needs.

Thank you to Holly at www.lifeofablindgirl.com and Deafie Blogger www.deafieblogger.com

The Plasic Straw Ban with Jessica Kellgren-Fozard

Jessica Kellgren-Fozard​ just sums up the plastic straw ban perfectly in how is affects some disabled people including myself. I couldn't make a better video if I tried.

As an essential plastic straw user who has seizures, involuntary movements, allergies, weak wrists or having to wear splints and PoTS (resulting in needing to lay down and drink a lot) along with a bunch of other stuff, straws allow me to keep hydrated with ease.

Jessica speaking out on this issue is so important to me. Like Jessica I've received a lot of negativity taking about the straw ban and how it affects me, or receiving comments like "I'm disabled and I don't need straws" or the many suggestions telling me about x,y,z, alternatives which don't work for me and then getting tired and bored repeating myself and having to explain why x,y,z, aren't suitable. 

What I found so odd is recently I went to a well known coffee shop (I won't name who) but I put a fruit pot which was in a plastic tub and I got a plastic fort to eat with and my coffee came with a plastic lid, yet... I got a paper straw! Where is the sense in that. Oh and my straw fell to pieces in my drink, yuck! Plus there was no recycling bin in sight for all my plastic.

Thank you so so much Jessica!

(Oh and thank you Jessica for reminding me to change the straw I keep in my bag!)

PS: I do reuse my plastic straws until they are no longer usable and when I do I cut them horizontally and into little pieces.

World Photography Day 2019

Today is World Photography Day. They can be artistic or capture moments in time. They can show aspects of who we are and they can be a form of communication and we live in a world of imagery in an online age.

Here is a collage of photographs I've taken over time...

Image description (starting from the left corner going down in columns)

1. A photograph of myself with brown hair, glasses and a colourful woollen scarf
2. A red postbox with mail being held ready to be posted
3. A bottle of Diet Coke with the name 'Naomi' in red letters on the bottle
4. Two postcards, a pen, scissors and colourful tape
5. An entrance ticket with yellow flowers and in white text is reads 'Royal Botanical Garden, Kew' 
6. On a wooden floor a pair of pink satin ballet pointe shoes
7. A bright purple cornflower
8. A white, brown and tan guinea pig looking up at the camera
9. A green succulant plant inside a hedgehog shaped plant pot
10. A brown donkey with a white muzzle
11. A photograph of me an my dad. I have read hair and dark glasses, my Dad is wearing a striped top, sunglasses and a navy baseball cap
12. My giant notice board filled with a collection of different items. Around the notice board are coloured lights.
13. A tan and black small dog nestled in a duvet
14. The Hogwarts Express train which is a scarlet red and black steam engine. Leaning on the train is my Dad in a red jumper and jeans.
15. A zen garden with sand and green plants.

The plastic straw ban and how it affects me and other disabled people

Plastic straws are a bit of an essential for me. I use plastic straws as I have a lot of weakness in my wrists due to hypermobility and palsies (paralysis in my wrists used by problems with my nerves brought on may my FND) so lifting cups and tipping a cup to drink can be tricky. I also use lidded cups buace of my tremor and involuntary momnetnts, and just being a clumsy person, plus lidded cups are a lighter weight with again are easier for me to hold. Also one of the gadgets I use are 'Safe Sip' lids which you have to use straws in them (they're stretchy lids that go over cups to make them un-spillable). 

I've also found a lot of straw alternatives unsuitable - they fall apart, I injure myself on them, I'm allergic to them, they can't be used in hot drink, they're not 100% hygienic, they cut off when bent or can't be bent etc.

I have had a lot of backlash at times when I've brought up the subject of plastic straws online. People saying "Well I'm disabled and I don't need straws" or "get silicone straws" or "carry some straws around with you and other comments and having to justify myself gets rather tiresome.

Note please not at home our plastic strawd are used and washed to death, literally. We use them until they die, and to be environmentally friendly we do cut them up before binning them so that they don't cause harm to wildlife.

Another reason why I need opposable bendable plastic is that because of my disabilities I have to lay flat a lot of the time, I also need to drink more fluids than most people so laying flat and having the drink means that the only suitable straws for me is a bendy plastic straw that will stay in position.

The plastic straw ban has had a huge affect on me. First off, drinking out. What I really don't get is that I'm given a plastic lid on my cup, a plastic fork for my fruit with is in a plastic tub yet I'm given a paper straw for my coffee?! Where is the sense in that?! Apart from one place I'm now given a straw alternative; usually paper straws with a) will undoubtably fall apart in my drink, hot or cold or b) I will have an allergic reaction to the dye in the straw or c) it's not opposable making it hard to drink with when reclined. One place gave me a recycled biodegradable plastic straw, the problem with this straw was that it epically melted in my coffee and with it being a hard plastic rather than the soft plastic of a body straw every time I had an involuntary movement I jabbed the roof of my mouth (ouch), it also wasn't opposable which like the paper straw it made it hard to drink with when reclined.

I'm all for looking after the plant. In our house we recycle everything the local council say we can recycle and we moan about what could be recycled but what the local council don't.

Disabled people are getting a lot of backlash about their need for bendy plastic straws, and this usually comes from non-disabled people who don't understand our need for them and how they are an essential to be able to simply drink.

Plans to make bendy plastic straws available at places like pharmacies just make it harder for disabled people ostracising disabled people and making disabled people feel the bad person for using  plastic straws.. Instead, why not educate people and give people a choice. In supermarkets have paper straws next to the bendy plastic straws and in cafés have a handful of plastic straws so when a person asks if they could have one they can but for staff not to ask the disabled people to justify why they need the plastic straw over a paper straw. And this brings me onto another thought, under the Disability Discrimination Act and Equality Act which means that resonate adjustments must be made for disabled people, would providing plastic straws to disabled people be classed as a reasonable adjustment by law?

Recently in the new's people have been complaining that the paper straws in MacDonald's ruin their milkshakes, instead people should spare a thought for disabled people who have to put up wth paper straws ruining every drink they have.

I totally understand the world's view to try and be more eco-friendly but it should have been more thought out. Like when drinks are served in plastic cups or with plastic lids but I've never seen a recycling bin in a café. And going back to MacDonald's, they're new 'eco friendly paper straws' are not actually recyclable.

All-in-all just spare a thought to disable people who to them plastic straws are a necessity and not a choice.

 

Guest post by Laura: Coping with Severe M.E. for Severe M.E. Week 2019

Here are some of my tips for coping with Severe M.E

This year marks ten years of M.E for me. With six and a half of those being severe, I wanted to write a little something that might help others cope. 

It took a long time and a lot of learning to know that just because I’m severely chronically ill, it doesn’t mean my world has to become clinical and without joy. 

1. Experience the outside world from bed

Ask family and friends to send you photos or little videos of places they’ve been so you get to see the outside world. It will help when you get that caged animal feeling.

2. Use your imagination: you can travel inside your own mind

I’ve been to the beach, walked into my garden and ran by the river just by using my imagination. Go wherever makes you happiest. 

Make your space
your own

3. Make your space your own

It’s very easy for a room to start to feel sterile when you have to have a lot of disability aids and medication about, so I think it’s important to try to keep your space as “you” as possible, especially when it’s the only place you ever see. 

Whether that’s pretty pictures on the walls, your favourite books lining your shelves or snazzy bedding it’s up to you but make it your own. 

For me, this also means keeping as much of the medical stuff out of sight as I can. For example, my mum keeping my catheter supplies in her room, so it’s not piled on my dresser.

4. Audiobooks are a lifesaver for me

I’ve always been so fascinated by the world and all its stories, so to be able to listen to my favourites quietly on my phone is a miracle. 

5. If you can bear it, touch can be such a big comfort

When you are in constant pain and surrounded by carers or nurses it can begin to feel as if the only human contact you receive is clinical. But we’re still human, and we still need comfort. 

Sometimes my Mum holds my hand, or a friend gives me a very gentle squeeze after a visit. Do whatever you can manage or whatever you feel comfortable with. 

6. Grieve

It’s okay to mourn the life you lost and the life you dreamed of having. I had to grieve for my old life before I could accept and find peace in my new one – and I’m happier for it. 

7. Find ways to keep enjoying your passions

For me, this means Mum reading articles from my favourite vegan magazine, looking up new exciting recipes for Mum to try, watching YouTube videos about sustainability and the environment, and listening to Audiobooks about combating racism, about feminism and sociology.

8. Sing your favourite songs in your head

Or, if you can manage it, you could make a playlist of your favourite songs that you can go to when you feel able to listen.

9. Find pen pals

I have found such comfort in sending and receiving little cards in the post. I have so many friends with M.E that I’ve met through the internet and it makes me happy to know I might be making them smile on a bad day. My Mum writes the cards for me which means I’m able to keep in contact with friends.

10. Take photos of the good times

If you do manage to do something, even if it’s a tiny something, take photos and keep them close by. I find it helps to know that there can be good times, even if I’m in the midst of a bad time. 

11. Wear jewellery and/or makeup or put on nice pyjamas

Who says we can’t wear nice things if we’re in bed? I’ve even known people to put on their fanciest clothes for a bit, just to make themselves feel special. Just because we’re ill, it doesn’t mean we can’t make ourselves feel nice if we want to. 

12. Let people know how you’re feeling

It’s up to you how you do this, some people just talk, others put it in a text, some use signs and others use coloured/symbol cards. Just don’t do it alone if you don’t have to.

13. Don’t compare yourself to others

This is easier said than done when it feels like the world is spinning without you but know that everyone is on their own path and comparison really is the thief of joy. You do you. 

14. If you’re able to, explore taste. 

Try different foods or drinks. Find what flavours you enjoy and savour every second. Also, eat what you fancy. Sometimes you’re way too exhausted to get through a meal so make the most of any cravings you might get. 

15. Weight it up

If you’d rather spend time with the people you love instead of using every last drop of energy to have a shower, do it. 

I have bed baths for this very reason, because at the moment a shower would take everything I have and leave nothing for something that might make me smile. 

It might be a different scenario for you, but if you’re struggling with the energy balancing act of “do I do this or that?” my suggestion is to do what will make you happiest.

Reposted from the The M.E. Association blog with permission from Laura

M.E. and Me on BBC Newsbeat for Severe M.E. Week 2019 (with the video documentary)

Click to watch on YouTube

I featured this documentary last year during M.E. Awareness Week and I wanted to reshare it as it's such a great documentary.

About the Documentary

M.E. an Me is an emotive documentary by Emma Donohoe who herself has M.E. diagnosed at the age of 19. The documentary features several young women living with severe M.E. - Sophie, Hannah and the mother and sister of Merryn who passed away as a result of M.E.

21 year old Sophie has severe M.E.  and has recently been diagnosed with M.E. She lives wth her partner Phil and she also has a young son Lucas. 

In the documentary her partner explains that Sophie "feels like she's a bad mother because she can't stand his [her young son's] own voice" and when speaking with Emma Sophie states "what kind of a mother can't tolerate her own child?". 

At the time of making the documentary Sophie was experiencing a crash in her M.E. which started 3 weeks before filming - in the M.E. community this is a heightened exacerbation of symptoms; as a result as the time of filming Sophie was unable to get out of bed and could tolerate only minimal sound and light. 

Some of her family are supportive but the majority just don't believe in her illness.

Emma explains in the documentary that you never know how long a crash can last but it leaves you feeling 'helpless and hopeless'.

Next Emma goes to meet Hannah who also has severe M.E. who is helping with research by Cure M.E. into M.E. to find a reliable test to diagnose M.E. In the documentary Hannah explains how she fights to be believed by a lot of healthcare professionals, some trying to pass her off as having a mental illness such as OCD or an eating disorder. She says "you're fighting your health and then you're fighting every health professional".

Dr Charles Shepard, a leading professional in M.E. says "It's partly due to lack of medical education on this subject and just not being aware, or even confident about how to diagnose this illness. So in many cases going for a whole year, or even more with no form of management or diagnosis. And this is jus unacceptable."

In next part of the documentary Emma meets with Merryn's mum and sister who talk about the progression on Merryn's M.E. and also how Merryn "was embarrassed of her illness". Merryn's mum speaks about he severity of Merryn's M.E. and how Merryn hod to eventually be tube fed and making choices between her mum washing her or just sitting and holding her hand and talk to her because of how little energy she had and how even when Merryn was told she was terminally ill that Merryn never gave up hope. Merryn passed away just 10 days after her 21st birthday after a 6 year fight with M.E.

At the time of the documentary there was an inquest into Merryn's death to see if M.E. was the cause of her death which now we know it was. Merryn is the youngest person in the UK to have M.E. listed as cause of death. 

In the final part of the documentary Emma explores some of the research into M.E. that is being done. Emma goes to Addenbrooke's Hospital where they take tissue samples from people who have passed away. Through research scientists have been able to discover inflammation in the nerves that carry information in the brain and spinal cord.

Refection

Even though this documentary only features a couple of people with severe M.E. all bed bound it doesn't give a view of those with severe M.E. who are housebound of 'sofa-bound' (though Emma does speak of here time when here M.E. became severe and she was house and sofa bound at points during that time). It excludes those who had mild and moderate M.E. and doesn't show M.E. from that aspect who are the majority of M.E. sufferers as only around 1 in 4 are severe or severely affected so it does't show the 3 in 4. 

However for Severe M.E. Week and today being the pinnacle Severe M.E. Day it does give a good idea a little of what some severely affected M.E. sufferers may be experiencing.

It was also good for Dr Charles Shepard to speak in the documentary and it was good to see the research aspect, though in reality research for M.E. is extremely underfunded.

And though in Emma's case her M.E. drastically improved, though still ill to some degree, the majority of M.E. sufferers don't get that breakthrough. Though I am happy for Emma that she got a significant improvement in her health and for making the documentary.

What is Severe M.E.? - Severe M.E. Week 2019

What is Severe M.E. Week? 

Severe M.E. is a day to remember and think about those living with Severe M.E. who are mostly missing and unseen from society because of how their M.E. affects individuals and to give those individual's a voice.

It's also a day to raise awareness of Severe M.E. and what Severe M.E. is and think about how individual's with Severe M.E. can be better supported, improve care and support and most importantly try and get more funding for research into M.E.

What is Severe M.E.?

M.E. is a multi systemic neuro-immune disorder. The Who Health Organisation recognises that M.E. is a neurological disorder. Researchers have found abnormalities in he immune, muscle, cardiovascular and central nervous systems.

There are 250,000 people with M.E. in the UK. (around 0.4% of the UK's population)
1 in 4 people with M.E. are severely affected than equals to around  62,500 children, young people and adults.

Individuals with severe M.E. are either house or bed bound, (I also use the term 'sofa-bound', when moving round the house is too much but you're able to make it out of bed that day). 

An individual's symptoms are more profound  making basic tasks most difficult and tiring to do or even impossible to do. A lot of individuals need help and support from others.

Many  individual's with Severe M.E. use a wheelchair either part or full time to help them with their mobility.

To date there is no cure for M.E. and there is also no consistent to universal treatment guidelines for M.E.

Many people with severe M.E. have chronic pain and for some individuals depite taking medicine for their pain their pain is so much that medication only helps a little. Some individuals are unable to take pain relief due to acute drug sensitivity.

M.E. Symptoms

(Note: this list is not exhaustive)

There are many many different symptoms of M.E. and each person is affected differently. Symptoms may be consistently there whilst other may be episodic. For some individuals they also may also go through periods of relapse and remission, whilst others may experience a steady decline in their health.

• Persistent/excessive exhaustion or fatigue
• P.E.M. - Post Exertion Malaise
• Cognitive difficulties - memory loss, poor concentration, reduced attention span, inability to plan and organise thoughts, difficulties finding words
• Chronic pain
• Muscle pain (myalgia)
• Muscle spasms
• Tremors 
• Poor stamina and weakness in the muscles and limbs
• Hypersensitivity  - noise, light, sound, smells, motion
• Speech/vocal difficulties
• Joint pain
• Headaches and migraines 
• Feeling flu-like
• Recurrent infections
• Sore throat
• Sleep difficulties
• Autonomic dysfunction - poor temperature control, postural dizziness, loss of balance, poor circulation
• Digestive problems
• Emotional difficulties
• Vision problems/visual disturbances
• Multiple Chemical Sensitivity
• Drug sensitivities
• Bladder problems
• Increased risk of pressure sores
• Sensory disturbances e.g. periods of loss of feeling in parts of the body or pins and needles sensation

The Effects of Severe M.E.

Quality of life test indicate that severe M.E. suffered feel every significantly the same as an AIDS patient feels two months before death. 98% of people with severe M.E. do not get better. Peterson describes M.E. as "one of the most disabling diseases that I care fore, far exceeding  HIV disease except for the terminal stages".25% of suffered with severe M.E. describe themselves as bedridden, and 57% have been either housebound or bedridden for more than 6 years, illustrating "in numbers rather than words that mobility in M.E. can be substantial." - 25% M.E. Group

Statistics

For every person with M.E. in the UK just £4 gets spent on research!

25% of individual's with M.E. are severely affected

2% are very severely affected

Action for M.E.’s 2014 M.E. survey report found that:

• 96% of respondents with severe M.E. said they had stopped or reduced household tasks

• 95% had stopped or reduced social contact

• 74% require full or part-time care

• 70% were no longer able to leave their home independently.

Surveys of severely ill patients by the 25% M.E. Group and Action for M.E. show that:

1. More than half are unable to attend their GP surgery, yet only a minority of these ever get a GP home visit.
2. One-third waited longer than 18 months for formal diagnosis.
3. Many feel suicidal because of their illness.
4. The overwhelming majority suffer severe pain.
5. Around one-third use a wheelchair.
6. Many say that psychological strategies, such as cognitive behavioural therapy or graded exercise, have not helped or have worsened their condition.
7. Improvements in health can occur – but over time.

References

• M.E. Association 
• M.E. Association, Severe M.E. Day 2017 - A Time to reflect and consider what we want to change
• Action for M.E. - Severe M.E.
• “My life stopped...” Voices from Action for M.E.’s 2014 survey
• 25% M.E. Group
• Voices from the Shadows
• 'Severe ME/CFS: A Guide to Living' by Emily Collingridge