Today, May 12th, is International M.E. Awareness Day.

Myalgic Encephalomyelitis (ME) is an infectious neurological/autoimmune illness of extraordinarily incapacitating dimensions that affects virtually every bodily system.

Why is it so incredibly important to spread awareness of this particular disease? Continue reading to find out…

ME is a severe, chronic/lifelong, complex, acquired infectious neurological/autoimmune disease characterised by damage to the brain stem which results in dysfunctions and damage to almost all vital bodily systems; mainly the central nervous system, gastro-intestinal, immune, endocrine, cardiac and musclo-skeletal systems.

• ME can be extremely disabling, sometimes even fatal.
• ME is most often “invisible” — a person with ME might look perfectly healthy despite being severly ill.
• People with ME are limited in how physically active they can be, but they are also limited in a similar way with cognitive exertion, sensory input and orthostatic stress (keeping the body upright, sitting or standing).
• The severity of ME differs from person to person, and waxes and wanes throughout the hour/day/week/month and year.
• Overexertion is one of the main dangers, as this leads to a worsening of symptoms, relapses and/or permanent disease progression. Or death.
• There is no cure as yet. No effective treatment either.

In my case this means – among many other things – being bed/couchbound, as I can only stand up a couple of minutes at a time without fainting. I’m unable to work or provide for myself financially. Receiving visitors (even close family members) or talking on the phone is almost impossible, because of my physical and mental exhaustibility combined with extreme sensitivity to sounds and light. Concentration, memory and other cognitive abilities are badly affected too, making it difficult to read, write or watch films… following the plots of TV shows, films or books are very difficult or impossible.

My body behaves a bit like an old, dodgy mobile phone battery; no matter how long I charge it (sleep, rest) it immediately stops working after only a super short call or a couple of text messages. The (mitochondria in the cells of the) body seems to literally be unable to produce or hold enough energy to replace what’s being used.

Some days are better than others. On a really good day I might be able to take a quick shower or perhaps cook some very simple food. There are days when all I can do is lie perfectly still in a dark, quiet room; crawling on my hands and knees to the loo might or might not be possible. On really bad days even maintaining consciousness for more than a few minutes at a time would be very difficult or impossible.

One of the biggest problems, that would also be one of the easiest to fix, is the lack of knowledge and understanding among doctors and other health care professionals as well as people in general. There are so many prejudices, misunderstandings and myths around ME and so much disinformation being passed around, making life even more difficult for so many of us. You can help. In fact, you already did simply by reading this post :)

To learn more about ME and how to support and encourage sufferers, please visit this informative website: http://www.hfme.org

Feel free to ask me questions, and to share this blog post with others.

Thank you for taking the time to read this, it means a lot to me ♥ :)

Eye pillows

Therapeutic eye pillows made from scrap pieces of fabric and ribbons from India, filled with rice. They are wonderful to place over closed eyes during meditation and deep relaxation. By blocking out light and adding gentle pressure they soothe, calm the nervous system, and help relieving tension in the muscles around the eyes.

One of them is lightly scented with nag champa oil, the other ones are scentless.

Fun to make, and very useful too :)

Brioche Infinity Scarf

I just finished knitting this infinity scarf, and I’m super happy! It’s fluffy and snuggly, and the colour is beyond amazing :) Unfortunately the colour seems to be a bit camera shy… it’s a much darker and richer raspberry shade of magenta than the picture shows, deeply saturated with a wonderful sheen. Simply delish..!

Pattern: Brioche Infinity Scarf by Unnur Eva Arnarsdóttir.
Yarn: Fyberspates Scrumptious Dk/Worsted, Magenta.
Needles: 7 mm.
Size: 20 x 180 cm (circumference).

^ my weekend, summarised.  it’s been a brilliant one :)

Mystic Shawl

Here’s another shawl I’ve knitted. Deliciously snuggly, wonderfully soft, heavy and very very warm  and comforting :)

The pattern is called Mystic Shawl, designed by Kathy Oliver of Scarlet Fleece, and is available for free on Ravelry. It’s knit side-to-side, which gives the triangular shape lovely and slightly unusual proportions.

The yarn I chose is one of my absolute favourites, Blue Sky Alpacas Bulky, colourway Black Bear, on 15 mm (US 19) circular needles.

The finished size (unblocked) is 190 x 80 cm, and I’m very very happy with the result!

Aromatherapy Eye Pillow

This is an aromatherapy eye pillow I made last night. I was feeling very emotional and inspired, full of gratitude and joy, and was looking for a creative way to express it. India came to mind, like so often, and discovering these scrap pieces of fabric and ribbon in my wardrobe made me very happy :)

The magenta coloured front side is decorated with a sparkly ribbon (bought at Bombay’s Crawford Market a few years ago), and I chose a simple but soft black fabric for the back. I didn’t use a pattern, just improvised as I went along.

It’s filled with rice, which I scented with a few drops of two of my absolute favourite essential oils: frangipani and jasmine (a memento from Chiang Mai, Thailand). So so delicious :)

I love everything about it, can’t wait to use it! ♥

Stripe Study Shawl

Just wanted to let my knitalong friends know that I’ve started my second Stripe Study Shawl now! It’s such a joy to be knitting with soft yarn again :)

This yarn (Drops Loves You; 50% cotton, 50% microfiber) is very splitty, but I’d choose splitty over scratchy any day..!

Stay inspired, lovelies ♥

This pattern is so lovely to knit, I’ve really been enjoying it :) And yes, it has definitely helped me get over my dislike towards garter stitch — yay!

I started on the border several days ago, and since then it seems like I’ve been knitting quicksand… the rows are infinitely long, and the progress so so slooow…

…but then, finally! 10 cm and a bind off row later… done! I purposely didn’t unfold the shawl in its entirety to have a proper look while I was binding off (my circular needle is only 80 cm, so the shawl has been scrunched up pretty much since the beginning of the project) because I thought that it might be fun to treat myself to a ‘big reveal moment’ at the end.

However, that moment turned out very anticlimactic… I’m so so disappointed :(

The shawl is much smaller than I expected. I measured it before binding off, but somehow the numbers (170 cm wide, 72 cm at the spine) gave me a very different idea than the actual size of it.

The colour changes aren’t at all as dramatic and interesting as a whole as I imagined they would be. Looking at parts of it and up close the colours are amazing, and I loved how it looked while I was working on it, but from a distance – like when wearing it – the magic is mysteriously gone…

Also, I realize now that I made a bit of a mistake when changing between the main and contrasting colours. I wasn’t generous enough when carrying the yarn between rows, so it has been pulled slightly out of shape… it’s kind of obvious when the shawl is laid out flat on the ground, but when it’s worn you’d really have to look for it to notice. Not a big deal, but still…

And then there’s the scratchiness issue. I already knew about that of course. I won’t be using Kauni yarn again.

Anyway, here’s a quick picture I took just now. It hasn’t been blocked, and I still have to weave the ends in etc.

So, to sum it up: I really enjoyed working on this shawl, and taking part in the knitalong has been so much fun and made this project feel very special; big thanks to Crafts from the Cwtch and Misadventures in Craft! However, I don’t feel that the final result reflects the amount of love and time I’ve put into it :( It’s just not something I’d enjoy wearing.

I’ll give the shawl to my mum, if she wants it. I’m thinking maybe it would at least have some kind of sentimental value for her, or something. Hopefully it will soften up a bit after a wash etc.

Anyway, I still do love the pattern (mahtavaa — kiitos kauhesti, Veera Välimäki!) and if you read my previous knitalong post you might recall that I was fantasising about making a grey alpaca version. Well, I’m on a super tight budget so I can’t afford that kind of yarn for now… but I did find an incredibly cheap cotton mix yarn in exactly the colours I had in mind! Enough yarn to make another Stripe Study Shawl would cost me less than 6 EUR  (way too tempting to resist!). I’ll be casting on my second shawl very soon – yay! :)

Delish! Very soft and lovely lovely colours :) The picture above is a bit overexposed, both yarns are slightly darker than shown. Hmm, now… which one will be the main colour, which will be the contrasting colour..?

Finally, a warm and heartfelt thank you to all the other knitalong girls for being fantastic company, for encouraging me and being such great sources of inspiration through their comments, pictures, blog posts, enthusiasm and more. I had so much fun, and I’m very grateful for having had the amazing opportunity to share this experience with all of you..! ♥

I find it absolutely heart-breaking that so many ME sufferers refer to themselves as ‘living dead’ people… Myalgic encephalomyelitis sure is a deeply debilitating, horrifying, painful and extremely difficult illness to live with, and although I don’t share their view about lifelessness (despite being severly affected by ME myself) I do understand where it’s coming from…

If macabre humour makes you uncomfortable or upset then this post might not be for you, so please stop reading now.

I’m currently reading the wonderfully odd and bittersweet novel Warm Bodies by Isaac Marion, a lovely story about zombies, and not long ago I watched three seasons of the vampire + werewolf + ghost tv-series Being Human (UK). And then there’s The Vampire Diaries and Twilight, of course. Anne Rice’s exceptional Vampire Chronicles. And, in this context perhaps the most fascinating of them all, the documentary The Vampire Princess. I can’t help noticing lots of poetic similarities between the lives of these unfortunate ‘undead’ beings and people in the same situation as me…

It’s impossible to explain, but I actually find this kind of stories both warming, encouraging and… comforting, somehow. A bittersweet, macabre joy and pleasure… Perhaps because they help bring out my own dark sense of humour, and nudge me along undiscovered paths, allowing me to explore the art of appreciating the grace in suffering in unexpected, lighthearted ways?

Just for fun a while ago I started scribbling down a list of some of the similarities between ME and vampirism. I mean, why not? ;) I’m finding it hilarious, but please consider yourself warned and stop reading now if you are easily offended or believe ME is too serious to be joked about!

Please note: ME (myalgic encephalomyelitis) is a serious, disabling, life-long and as of now incurable neurological/autoimmune illness that can happen to anyone, at any time. ME affects practically all aspects of the body, expresses itself differently in different people, often varies over time, and can be fatal. It is not a mental illness or a behavioural disorder. For more info, please visit for example The Hummingbirds’ Foundation for M.E or if you prefer reading in Swedish Gotahälsan.

So, here goes…

38 Similarities Between Vampirism and M.E.

• Their existence is still a mysterium
• Those affected often experience themselves as a completely different person after the “transformation”
• They tend to be very sensitive to direct sunlight, bright light
• They tend to sleep all (or a large part of) the day
• They are often active at night, or at odd hours
• Their complexion is often very pale
• Due to the lack of awareness among people in general, they are often misjudged and looked upon as outcasts of society
• They tend to have a tenacious grip on life (seglivade in Swedish)
• It’s often difficult for them to make themselves – their needs and limitations – accepted and respected in social contexts, because of other people’s lack of understanding and compassion
• Because of their physical limitations, they aren’t always able to live or behave according to the unwritten, social norms of society
• What sets them apart from “ordinary people” is usually not visible to the naked eye (at least not at first sight)
• They often experience a distorted sense of time, because of the limitations their condition result in
• They are often misunderstood, judged and insulted by ignorant, narrow-minded people
• They tend to have odd and unusual eating habits
• Red, staring eyes are not uncommon
• Their skin temperature tends to be lower than what’s considered normal
• Their personal hygiene often suffers because of their condition, at times making it appear as if they have been sleeping in a dark earth cellar for a long time
• The level of their own vital energy is very low or at the least substantially limited
• There are still mixed opinions among the public whether they exist or not
• They can be killed by getting their heart ripped out, getting a wooden stake shoved through their heart, being beheaded or shot with a silver bullet
• They can be very attractive, charismatic and seductive
• They often show signs of seemingly supernatural (inner) strength
• No one knows for sure why or how the “transformation” happens
• It seems to be a permanent condition
• They are often dealing with very intense emotions and feelings; like pain, loss, grief, love and yearning
• Many of them suffer from lots of guilt because of how their condition affect people around them
• Many of them find it very difficult to accept their condition at first, which often gets expressed as denial, confusion, frustration and pain; which in turn leads to intense suffering
• Their condition often forces them into involuntary aloneness for long periods of time
• Their sense of hearing is usually affected by the condition, often making loud sounds and noise painful or even torturous
• Many of them have a strong connection to nature, and are easily affected by for example the phases of the moon
• Their blood volume tends to be lower than normal
• Their brains and nervous systems don’t work in the same way as other people’s
• People around them tend to experience fear, frustration, helplessness, doubt and confusion — at least until they accept and learn more about the condition
• They all seem to be driven by a fierce hunger; a hunger to be alive, to live life fully and a burning desire to become a “normal human being” again
• There is very little funding going into medical research about these conditions, and they aren’t getting the medical support they need
• They often feel that people around them don’t see them for who they truly are, that they keep getting looked down upon because of people’s ignorant, prejudiced ideas
• It’s possible to live a full and happy life, despite the condition
• They all want to be loved, accepted, respected and seen — just like everybody else

Please feel free to add your own in the comment section below! :)

You can help! Get informed, learn more about M.E. (på svenska) and help spread awareness. Donate money to research. Lend your voice to those of us who are not getting the medical, financial or practical support we are so badly in need of; write about it, talk about it and put pressure on politicians and other people of power.

♥

Ten stripes done! I’m really enjoying this pattern :)

However, it has a sort of bittersweet feel to it. While the rich colours and the clever geometry of the design are fab, the shawl is still sadly very… loofah sponge-esque to the touch :( Uncomfortably rough and scratchy, to be honest; I can even feel the itch right through the fabric of my sweat pants when I’m knitting and it’s resting on my lap. If it doesn’t change a lot after the first wash, this simply isn’t something I’d enjoy wearing…

At this point I’m actually wishing I had chosen a different yarn. Maybe Debbie Bliss Andes or Fyberspates Scrumptious (yes they are pricey but a girl can always dream, right? ;) with slightly bigger needles, or some sort of (brushed) alpaca yarn with a bit of a halo… perhaps a natural looking combo of medium and light grey… oh, well.

The picture above doesn’t do the colours justice at all. From the top of the shawl down (reversed in the pic), the yarn changes from a vivid, deep cerise and raspberry through a slightly dark electric red and saturated cherry red, to dark blood red, and then starting over again with cerise. Very yummy :)

I’ve tried all the tricks up my sleeve to capture its true colours on camera – natural light, flash, no flash, indoors, outdoors, direct sunlight, indirect light, multiple light sources, different backgrounds, changing the camera’s white balance settings, Photoshopping it in a million different ways etc – but unfortunately it’s just not happening… Any advice? (I can’t shoot in RAW, I have a simple digital camera, not a DSLR.)