5 Recommendations: May 2020

I’m excited to start sharing monthly summaries of things I’ve been reading or listening to. There might not be a book every month (though I would like there to be!) but I’m hoping this blog will encourage me to find interesting articles, Instagram posts or songs to share with you all. I didn’t expect to be publishing this post so far into June, it’s surprising how quickly things start to feel distant…

I did finish a book in the later half of May, so I’ll kick off with that.
A book with an illustrated cover of three trees sits on a chair outside.

The Hidden Life of Trees by Peter Wohlleben.

As you can tell from the title, it’s about trees
“What They Feel, How They Communicate: Discoveries from a Secret World”.

I’ve been reading this on and off since November 2019, there were weeks when I didn’t read a single page. Sometimes because of health (both mental and physical), other times because I was drained from my GCSE course or writing awareness posts. I’ve recommended it to a few people already. Even in the first chapter there were facts I used in conversation with someone, only a couple of days after starting the book! I found the variety of ways trees communicate so interesting. Both with each-other (via fungal networks) and when using natural chemicals to repel pests.

It’s made me rethink my reaction to the efforts of companies replacing old trees with new ones. Did you know it’s important to have forests with multiple generations of trees living together? When they grow up shaded by their “parents” trees grow more slowly, making their wood more dense and strong. As well as giving them a chance to establish the communication networks I mentioned a moment ago. I don’t want to give you an entire post on trees so if this sounds interesting, do look the book up for more. It is available in audio book, for anybody who finds those more manageable (a five minute preview can be found if you google it. Helpful to check if you like the sound of the speaker), and is printed in many different languages (the English translation I have was a good read. Jane Billinghurst, the translator, retained an engaging “voice” and plenty of personality).

I was intending to keep these posts reading-based but then song lyrics came to mind and I couldn’t resist. So my next offering is a song. And, if you’ve found this site via my Instagram you’ll recognise it as my current favourite…

Vienna by Billy Joel

Okay, entire albums of Billy Joel. So far I’ve been enjoying The Stranger (1977) and An Innocent Man (1983). I’d barely listened to him until recently, though there were always songs of his I recognised. There are few people reading this who won’t have come across one or two like Uptown Girl and She’s Always a Woman, the latter is actually what lead me to listen to a whole album of his. Anyway, why single out Vienna? The first time I heard it I felt like I’d been caught in the middle of my thoughts and was being spoken to directly. I had started to tune out of the music a bit, thinking I’d go “get something done” even though my body was badly in need of rest. “Slow down, you’re doing fine, you can’t be everything you wanna be before your time,” has to be one of my favourite lines. I mentioned this song in my “Week with M.E.” story posts, saying when you’re chronically ill it feels like “your time” is a lot slower to come around than everybody else’s. I listen to this song a lot. Mostly when I need a reminder that just because I’d like to do more than I have, doesn’t mean I never will or that it all has to be done in a rush.

A photograph of honeysuckle yet to fully flower. The leaves and buds are both a vibrant green.
Thirdly, I’ve been spending a lot of time on Instagram over the past month, so I’ll add some references from that world:

# The Vintage Fashion Challenge

This is a 30 (thirty) day hashtag challenge with daily prompts (as a part of weekly themes) set up by “@ILiveInMyLab”, “@MakeThisLook” and “@TinyAngryCrafts”. They bring together a wide community of people, all engaged in the world of vintage fashion. Some pull out retro inspired looks, others are 100% true vintage and, personally, I fall in the middle, wearing a semi-practical (I say “semi” before anyone mentions the 1950’s ball gown…) mixture.

It’s a wonderful excuse to dress up. Which, this year, was needed by everyone who has been mostly isolating at home. But over the last two years of taking part (this being my third) it’s always had that value for me, since I’m mostly alone at home in more normal times anyway. And, while my parents appreciate the fashion show that is Sakara simply existing, it is nice to share my favourite looks with a wider audience.

Take a scroll through the hashtag if you’re curious!

But, to start you off, here are a few of my personal favourites (I would love to include more but don’t want to make you scroll an entire feed…):

@RubyRouxBijou, with the bonus of a relatable caption:

@EccentricMillenial sharing a daydream I’d also rather be living right now (also I love a good dose of ‘80s-does-’50s)

@ILiveInMyLab dishing out qualified advice on Future Fashion:

https://www.instagram.com/p/CASti6jAQzi/

This post comes up properly embedded in my drafts but for some reason is only showing up as a link in the published post!

@TheVintageDiabetic sharing her traditional folklore costume from Bulgaria:

@XandraChantal with a dress featuring my absolute favourite shades of green, this one’s a day dream in itself.

@TheRebelCostumer for something doubly vintage!

# ChronicIllnessAndME or #LetsTalkAboutME

Another couple of hashtag challenges, this time focused on M.E. awareness month.

I combined some vintage fashion and disability prompts in the hope of making my account a space to express both my personality and the reality of being sick, without one seeming to erode or hide the validity of the other. Visit my Instagram or read the Summary Blog Post for more info on my contributions. This is a space to share things from others, so here are a few posts which resonated with me. I’m sure there are many I have missed, and others I did read which belong to people with private accounts. So this is just a small taste of the things people have been writing and sharing:

@LifeOfPippa:

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Our prompt for today’s #LetsTalkAboutME is Day-To-Day life. There are pretty huge variations in what a ‘typical day’ looks like for me, but let’s give it a go…⠀ ⠀ In the morning I have breakfast and get ready slowly, then take a well-deserved lie down (????????) before commuting from bed to desk and cracking on with work.⠀ ⠀ I tend to have more brain power first thing, so I’ll usually be writing, content planning or doing emails. I’ll have an easy lunch in front of the TV, and if I feel up to it, have a teeny 1-3 minute walk outside.⠀ ⠀ I’ll do lighter work tasks in the afternoon, e.g. editing something I’ve written or drafting social media posts, before going off for a bigger rest in bed. When I’m up again I’ll read or watch YouTube, and then make my tea. I’ll try and do any light household tasks now too, so I can rest afterward.⠀ ⠀ Most evenings I’ll chill, maybe speak to family or friends on the phone, and spend time with a book or on social media. Last off, I’ll watch TV, read (again!) and go to bed. Such a rock and roll lifestyle, I know.⠀ ⠀ I’d say that’s a fairly average day when there’s nothing exciting happening, or when I’m not suffering the repercussions of said exciting things. In a nutshell, it's doing what you need to do and resting everywhere you can in between. I know my life is work-centric. It does vary though, and there are a couple of ‘Day In The Life’ videos on my YouTube channel that hopefully reflect this a bit better… link’s in my bio! ⠀ ⠀ It’s surprisingly difficult to paint an accurate picture in a caption, especially when things fluctuate: today, for example, I did an hour-long interview which (even with pacing) wiped me out for the rest of the day. Different tasks require different levels of mental and physical exertion, and again, this varies drastically between people.⠀ ⠀ It’s ultra-important to make clear that my routine is by no means a representative day in the life of any person with ME/CFS. I hope that if this week has shown you one thing, it’s just how much individuals’ circumstances vary. So with that in mind, I’d love to hear about your day-to-day life too. Do you have any little routines that help you to manage? ????????‍♀️????

A post shared by Pippa Stacey (@lifeofpippa) on

@EmmmaSometimes (a post about Lyme disease for which May is also the awareness month):

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I want to talk about one of the illnesses I have; Lyme disease and how you can protect yourself from it ???? Humans of all ages as well as your pets can get Lyme disease & co infections. We protect our cats and dogs against ticks but we as a public rarely think to protect ourselves. Infected ticks have been found all over the U.K. google The Big Tick Project that ran a few years back for a map. I live in the south east which is a high risk area. It’s not always obvious that you’ve been infected, not everyone gets a bullseye rash and it’s not just ticks. Some get Lyme from mosquitoes- a German study found that mosquitos across Germany carry three strains of Lyme. Canada have recently officially recognised mother to foetus transmission of the disease. Babesia a malaria like co infection is known to have been found in blood donations and deaths from blood contaminated with babesia have been recorded in the USA. So it’s not just ticks but they are the main vector. Prevention is better than cure. There are treatments to help with more success in acute cases but there is not one known cure to eradicate the disease 100%. Remission is always the aim. I didn’t know I had Lyme disease or 6 co-infections. I was misdiagnosed for 6 years before being officially diagnosed. This is my 4th year in treatment. ???? it’s slow and hard going but improvements have been made. What are the symptoms? An acute infection may seem like bad flu, may include; feeling dizzy, night sweats, pain that migrates and fatigue. I won’t go into late state symptoms because there’s a lot – I once had 60 symptoms ???? How can you protect yourself? You can minimise your risk by using a tick & bug repellent such as @mosiguardnatural when going out in to nature, especially in woodlands/fields. Trailing fabric is how scientists collect ticks to study! So long dresses/bare legs in the woods and fields might make for the prettiest of Instagram photos but trust me your health is worth more. Wear long sleeves/trousers tucked into socks. Do a tick check and shower after being in nature, remember they can be as small as a full stop. I hope this is helpful ???? I’ve tagged accounts for more info

A post shared by Emma (@emmmasometimes) on

@LilRedCookBook

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I used to self-describe with the phrase "invisible illness" all the time, but that feels increasingly wrong. Our illnesses aren't invisible, it's ableism which creates narrow, biased, ignorant stereotypes of what disability is or isn't. There are people in my life who see me. They can tell the level of pain I'm in, from my face or the way I walk. They see me stagger when I stand up, they get me a chair or water. They hear me slur my words or blank out like I'm drunk. They check on me when I sleep for 18 hours. They hear me vomiting in the bathroom and worry when I can't eat. They ask if I can tolerate touch. They come to me when I can't leave my bed. They are willing to see, acknowledge, enter my reality. ⚫PEM: crash/relapse/collapse of symptoms ("severeflu") after any activity, weather change, stress, or seemingly at random. Extreme exhaustion causing inability to function. Sleep dysfunction/insomnia. Cognitive dysfunction ("brain fog", disorientation, spatial instability, unable to think quickly/clearly, slurred speech, memory loss). Orthostatic intolerance (dizziness, blurred vision, fainting). Difficulty walking, especially stairs. Muscle pain (throbbing, stabbing, burning). Joint pain and stiffness. Nerve pain and sensitivity. Headaches. Migraines. Sore throat. Swollen lymph nodes. IBS (bloating, pain, diarrhea). Irregular appetite. Nausea and vomiting. Inability to regulate temperature (chills, night sweats, low grade fevers). Painful sensitivity to light and sound (tinnitus, eye pain, difficulty driving at night). Chemical and environmental allergies. Muscle weakness (poor coordination, unsteady on feet, twitching, cramps, tremors). Numbness and tingling in extremities. Irregular heartbeat. Extreme thirst and dry mouth. Hives and rashes (or skin itching or burning) Vertigo. Asthma and respiratory issues (chronic cough, coughing with vomiting, breathing difficulties, chest pain). TMJ locked jaw and pain. Irregular menstrual pain and complications, anemia. Adverse reactions to medications. Sensory overload. Immune system dysfunction and vulnerability. Incapacitated by co-morbidities or other sicknesses. Bedbound, housebound, unable to work for week/months⚫

A post shared by ???? (@lilredcookbook) on

@RollingRosie times two (X2) as I couldn’t choose!

This is the tiniest selection of posts, mostly chosen in a very biased “I’m good friends with these people” way, as they were the first to come to mind. I also thought of quite a lot of chronically ill and/or disabled people who create excellent content, but not necessarily in honour of a May awareness month. So this is sure to inspire a post featuring a greater range of chronic illness accounts soon.   

More next month?

This post has grown longer than I’d like because there was so much going on in May! Having said that, I’m already thinking about what could find it’s way into June’s summary. I expect I’ll mostly talk about things I’ve enjoyed, but I’ll also include things that aren’t exactly intended for enjoyment. Like some of the awareness posts I put in this month. Engaging in things that make us happy is important, and so are sharing stories and knowledge from people who aren’t widely listened to. I hope I can balance both. Speaking of which, it would feel like a misrepresentation of May 2020 to not mention any of the racism that’s nothing new, but has come to a wider attention in recent weeks. You’ll probably have seen it shared already but this is an excellent resource, especially for a long list of petitions I’ve been gradually working my way through each day while curled up in bed: https://blacklivesmatters.carrd.co/

This IGTV video by Stephanie Yeboha is something I would urge anyone to watch,

though I must note there aren’t any captions, something I wish Instagram would make a feature for on stories and videos within the app:

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I'm tired of it all.

A post shared by Stephanie Yeboah (@stephanieyeboah) on

I begun writing a separate post in which to share everything I’d found so far then realised how unnecessary that was. The resources are out there. You can find them as easily as I could. So if you need me I’ll probably be in bed, reading as many books as my cognitively challenged brain can handle, hoping to change the world (one slightly-unlearnt personal bias at a time).

See you next summary x

Sakara 🙂

P.S. For anyone who thought “Oh, I wouldn’t have minded more vintage fashion posts!”… Here are some more vintage fashion posts:

@Kelley.Voss convincing me that hoops are the answer to all social distancing dilemmas:

@OrientalSpiceAndSomeChocolate with colours that make me happy:

@Miss_Smee in a spot that looks perfect for lounging:

Now for @TinyAngryCrafts with a mixed up outfit I only just realised (when I went and dug this post out of my saved folder on Instagram) she made herself, which just makes it better:

@MissCorinDawn I knew I wanted to choose one of her retro outfits, must admit her dog swayed me towards this photo in particular! (That hair flower had something to do with it too!):

Finally @Hannah.r.e.Trout to round us off with a very on topic shot of her reading (have to say I rarely looked like this while doing any of the reading referenced in this post):

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