Recovery?

I met with my MP this week to ask him to sign a petition requesting an inquiry in the abuse of people with ME (PWME; you can find more information here).

Unlike our previous MP, he didn’t sign but fobbed me off by saying he was already ‘signed up to something to do with ME’.

However, this isn’t the topic I want to write about today, rather I’d like to discuss a common response from health professionals and, indeed, my MP. When certain people hear I have ME, instead of listening, they proceed to tell me all about it ending with ‘recovery is possible you know’ or words to that effect. Recently I’ve heard this from my practice nurse, my MP and some well meaning acquaintance.

Let’s have a wee look at this, according the research, around 5% of PWME recover. Yes, you read it correctly, a 5 measly % (I think it’s higher for young people however). The term ‘recovery’ is up for debate too; within the ME community, it’s widely believed that ‘remission’ is a more realistic outcome as those who have been described as recovered aren’t back to full health, just better than they were.

So why the insistence on reinforcing recovery?

Well. Firstly I think it’s easier for people to cope with; living with ME can be seen as a pretty miserable existence: not working, low income, limited activity, isolation, chronic pain etc etc. So it’s much more comfortable for you to view this as temporary.

I’m comfortable with it being permanent however and by focusing on what ifs devalues my life as it is here and now. Yes, it may not be the life I’d wished for but it’s a fulfilled and generally content one. Living with chronic illness has taught me patience, compassion and empathy in levels I’d not experienced before. I’m able to sit quietly with myself quite comfortably and whilst I may not be achieving things in the way our society values, I’m able to create beautiful things and pass on those skills when the opportunity arises.

Another reason for the recovery agenda is the infuriating insistence on being positive and because PWME are desperate for ME to be recognised as a physical illness we worry that presenting as anything other than happy, joyous and free will be used as evidence against this. So we smile sweetly and nod ‘yes, I could wake up tomorrow and be fine‘. Not ‘believing’ in recovery isn’t being negative, or even realistic (although, for me, I’m past the magical five year point when, for even Pollyanna’s, recovery is extremely unlikely). It just is and it minimises the reality of how life is for us.

I find all of this very tricky to write, back in the day I used to be pretty literate but I reckon what with the combination of brain fog and some neurotoxic medications my i.q. has about halved. Fog really is the way to describe it, it’s like wading through a thick peasouper in there where words are hiding and my train of thought skips away.

Right enough of that, here’s a little crochet catch up. I’m still hooking frantically and have made progress on all three projects.

Lilliana is looking very pretty and I’m up to date with her at part 7.

Similarly with Atlanticus, he’s unintentionally mirroring Lilly’s progress and is also at part 7

However, excitingly I even have a Finished Object: meet ‘A Spicier Life’ blanket which is a crochet sampler basically, having different stitches every few rows. The only issue is that this causes differences in tension so the edges were very wonky until the border was added; it’s still a little wavy but once you’re snuggled underneath hardly noticeable. I quite like it, the Nurturing Fibres Eco Cotton I’m working with for the other projects has simply ruined me. This is in good old Stylecraft DK so will wear and wash well, I see it becoming a trusty doggie blanket. Needless to say I’ve already a new WIP in mind…

Crushing on crochet 

There has been a curious amount of crocheting going on here over the last week or so. Somehow I’ve managed to get engrossed in not one, but two Crochet-Alongs (CALs); one called ‘Lilliana’ designed by Vanessa Smith of Hooked on Sunshine and the other is ‘A Spicier Life’ by Sandra of Cherry Heart.

I started both a couple of weeks late for various reasons so have been playing crochet catch up ever since…

They are both blanket patterns, Lilliana is crocheted in the round and the other is a straight back and forth row pattern.

The Spicier Life Cal is crocheted in my go-to crochet yarn, Stylecraft Special DK, it’s cheap as chips, soft, squishy and comes in a huge amount of colours. The downside is that it’s 100% acrylic, so is essentially plastic and will be around way longer than you or I.

I have to admit that Lilly is my fav (I feel awful saying that, it’s like choosing a favourite child) because I’m using the gorgoeus Eco Cotton by Nurturing Fibers as recommended in the pattern. It’s my first time making an entire blanket with cotton, partly in an attempt to wean myself off plastic and I have to say I’m pretty smitten. The colours are so pretty and the slight sheen adds to the effect; as a self confessed fibre sniffer, it smells lovely too (like sunshine I am advised).

The unfortunate thing with Cals is that you only receive a portion of the whole pattern at once, so what to do when you’re up-to-date and twiddling your thumbs waiting for the next instalment? Well start another one of course!

So to complement Lilly, I also started another Atlanticus, also by Hooked on Sunshine. I made one earlier this year, in grellow, to go on our bed.


Despite being pretty large, it didn’t take that long and is now the doggies favourite snuggle blanket.

So for this next one I’m following the pattern colours, in eight different shades of blue, green and cream in Eco Cotton. It’s working up beautifully and looks very different from my original one.


If you’d like to keep up with my progress, I regularly share photos via Instagram

See you again soon

Unrest

I’m missing walking right now. Autumn used to be the kind of year we’d go on really long yomps in the Highlands; the weather was cooler, the midges were starting to die off and the colours of the bracken, heather and hillsides are beautiful. If you’re lucky you might get to hear the deer rutting or even catch a glimpse of them.

But instead of venturing into the great outdoors, we both watched Unrest, a film about M.E. 

It’s a difficult and powerful film; Jennifer Brea, the film maker, doesn’t flinch from showing us herself at her most ill and vulnerable. As someone who has lived with this illness for over five years now, with little hope of recovery, I identified with her efforts to try anything, no matter how crazy, to try and cure herself. For me there’s been supplements, diets, a certain well advertised and expensive ‘cure’, as well as consulting various specialists from private doctors to herbalists, but the bottom line is, until we understand what causes M.E, we have no real chance of curing it. You can help by going to see the film, we need better awareness to promote funding into research as well as donating via the Unrest website. 

PS I hope you found me ok, this is now the new domain address for Weaving Heart

Hi ho

The suicide rate for people with ME is nearly seven times higher than the so-called normal population (see here).

For us living with ME this isn’t surprising. Right now I’d love a day where climbing the stairs doesn’t feel like climbing a mountain and this is every day, day in, day out.

So as you may have gathered I’m feeling pretty sh**e right now. 

About five years ago, after my diagnosis was confirmed by a consultant, who threw in fibromyalgia for good measure, I started on some pain meds. One of those was pregabalin (aka Lyrica), a medication that’s prescribed for anxiety and seizures but is also pretty good for pain. At one point I was on 600mg daily but after having reduced very slowly I took my last dose a few days ago. 

It’s a pretty nasty drug by some accounts; hailed as the new wonder drug, it has become apparent that it can be abused as well as being found to essentially cause brain damage (see here – the research refers to gabapentin, the precursor to pregabalin and it is believed that the research applies to both).

For me, it worked really well at first, but like most of these things, my soreness gradually returned and as I had also gained a whole heap of weight on it, I decided enough was enough and agreed with my GP to come off it. It’s not a drug you can stop abruptly, there’s the risk of seizures and some other pretty unpleasant unwanted effects if you do. I found a group in Facebook (here), followed their guidelines and reduced gradually without any major discomfort.

Now I’m off! I am feeling a bit rough now, but I don’t know if it’s due to this or it’s just a bad few days as it feels like exactly ME. 

So to cheer myself up here is a list of things I’m absolutely loving right now

1. Ok, let’s get the cheese over and done with: top of the list has to be Mr Weaving Heart. It’s rotten for him when I’m really unwell, I’m no fun as even speaking is pretty much ruled out and I’m a stubborn old thing too and will insist on doing stuff when I really should be letting him take care of it all. He’s even taken to dosing me with Smarties! I have a pill box thing, as I was getting into bother with forgetting whether or not I’d taken doses so he fills this every night, now with added chocolate as he thinks I deserve a treat. How lovely is that?

2. My knitting: I’m brioching. It’s fab and I adore the smooshy, squidgy fabric it makes. What helps is I’m using some merino/cashmere/nylon from Qing Fiber which must be the softest bounciest yarn ever. 

3. This stitching: it’s a design by Ink Circles called Damask Square, and is my ‘easy’ (ha!) cross stitching project. I’m sewing 2 over 2 on 28 count grey Irish linen, making it the same as 14 count Aida so nice and big but oh so elegant. The thread is overdyed cotton floss from Weeks Dyeworks in amber and is such a good contrast with the smokey coloured background. The texture, which I can’t really capture by photo, is perfect.

4. I’ve just finished reading an entire 16 book series by Robin Hobb; similar to Game of Thrones, it’s based in a fantasy world with medieval overtones and fabulous characters. You know how you fall in love with certain characters and storylines? Well I’m still in that, thinking about them and coming to terms with the fact that most of the rest of the world has no idea of the adventure I’ve just been on. For those of you in the know, Fitz, the Fool and Nighteyes have my heart forever.

5. Flapjack: I’m not up to eating much but could manage an entire bus load of this gorgeous sticky, sugary, oaty loveliness.

What now?

It’s been over two months since my last post and up until now WordPress are still keeping this site going; it’ll disappear very soon but until then I’ve been tempted to write. I’ve actually written quite a few posts but not got as far as hitting the ‘post’ button because I’m nowhere closer to having any clue about some of the things I was pondering in my last published one.

Looking at some of my stats, it seems that the most popular posts are reviews (like this), closely followed by anything about M.E – this was surprising to me, as writing about my health always feels self indulgent. I’m going to try to write about three posts every month, with specific topics to be rotated, it feels a bit more organised and hopefully covers something that a few readers will find helpful. So I’m planning on a health post, a review post and a WIP/FO post every month; let’s see how long it takes for that to collapse into a pile of chaos…

There have been a couple of changes since I last wrote, despite not physically getting up to much, life still happens. Firstly, I have caught the stitching bug which is a huge surprise to me as I have past declared quite emphatically that I hate hand sewing. Machining is ok as it’s fast and usually over pretty quickly, but fiddling around with a needle and thread trying to make deliberate, neat stitches was completely beyond anything I could imagine enjoying.

Thankfully, I have grown up a little and after inheriting a half finished tapestry from my step mother, I have fallen down a very big rabbit hole of cross stitching.

As usual I have already managed to acquire various frames, stands and boxes of floss (thanks EBay) and I’ll talk more about it in a future post.

The other change has been symptom-wise; I had a really good summer with hugely reduced fatigue. Mornings are generally my worst time and I was even having happy times getting up and feeling relatively normal. It was a joy and I sucked up every second. I am very aware, however, that M.E. is a cruel mistress so I kept it in the moment knowing that at any point it could pass. And, of course, it has; my fatigue is most definitely back along with the pain, stiffness, migraines, brain fog and other delights.

It was lovely to have some weeks, rather than the odd day, of relative health and it enabled me to make some great memories. So no regrets and I’m positive that it’s a sign of more to come I hope.

It’s six years now since I caught the virus that triggered my illness. I believe it was a combination of factors though that led to that point, including two courses of hepatitis B vaccinations, a flu jab and just something else weird going on with my immune system over the previous couple of years, alongside finishing a very stressful qualification that I had studied for while working full time. There’s a theory in mathematics called the ‘Catastrophe Theory’ that Dr Myhill and her supporting colleague, Craig Robinson, apply to recovery and relapse in M.E. Very basically, it argues that a series of events lead up to creating a scenario where a very small change acts as the tipping point and pushes you over into having M.E. The article here describes it much more articulately if you’re interested.  I can see how this happened prior to me getting unwell, if I had paid attention to the warning signs maybe I could’ve prevented it from happening. Who knows? I try not to think about it too much to be honest as it’s only upsetting. 

So best to move swiftly on and focus on what is rather than what could’ve been. Right, I’m going to leave you with some photos I took at our local community centre where the Scottish Diaspora Tapestry was on display. It is an extraordinary work of art and if you get the opportunity to see it please do. There are over 300 panels, hand stitched by different communities from all over the world, each completely individual and highlight their Scottish connections. Take a look at the website for more detailed info. These are a mere handful I have randomly selected, because it’s impossible to choose favourites. See you soon, and thanks for continuing to read.

Cheerio for now

I’ve decided not to renew my website subscription. Largely because of financial restraints but also as I think it’s outlived it’s usefulness. I have the option of a free version and may continue with that but as I understand it, the URL will be slightly different however I’m yet to confirm that.

I’m taking the opportunity to consider which direction I’d like the blog to go in; I enjoy showing off my yarny adventures but I also like having a small platform to increase awareness about ME and other issues. There are wider areas of my thoughts that I might want to discuss as well.

A recent discussion in a knitting group brought home how society has internalised discrimination against disabled people. For example, seeing someone in a wheelchair equals belief that a venue is accessible. It doesn’t occur that whilst the person might be there in a chair, their actual experience of the event may be one of real difficulty and frustration, for example.

I also have lots of strong opinions around other social justice issues – to expand, my initial idea about this post was going to be based on our attitude towards aging women and how pressurised we are into dyeing our hair to cover grey (I recently had two different conversations regarding how ‘aging’ grey hair is, as if aging is something to hide and be ashamed of). 

However, I’m yet to decide whether or not my opinions are worth sharing with the wider world (I don’t mean this in a falsely modest way but simply in a realistic awareness of my ‘size’).

My blog has the potential to be a negative experience for me as well. I have a tendency to rant without paying much attention to who I could hurt in doing so, including myself, so maybe curtailing the platform for this may be a positive one for me.

Most importantly, this blog has humbled me beyond words, I’m constantly amazed at the fact that you bother to read it in such numbers and some of you have even taken the time to comment. So a huge thank you for sharing my journey thus far.

I’ll leave you with my final ‘ta daah’ photo, a crocheted blanket in Stylecraft Special DK. The pattern is ‘Rosslyn’ by Helen Shrimpton, a paid pattern on her website.

How to tell you’re a fibreholic

1. When most textiles in your home have little resident ‘fuzzies’; I could probably clean off a good 50g of random fluff from various curtains, chairs and rugs. Bonus points for sparkle.

2. When you regard your house as being spotless despite the previous point because discarded fibre is decor right?

3. An easy one but when every room in your house (except the bathroom – steam and fibre do not a happy marriage make) is essentially fibre storage, living space is secondary (while trying to come up with an example of this, I honestly couldn’t think what else you might keep in your drawers other than fibre, yarn and tools for working with said items) (I mean obviously there’s going to be the odd man drawer and who knows what’s in those but other than that…) 

4. When rooms are divided into ‘areas’; like there’s my place for Nunoco fibre, I have a special sweater yarn stash and it’s really important to keep commercially dyed sock yarn away from indie dyed as you know a skirmish will break out if they get too close.
5. When people come into your house for the first time, they look around looking slightly confused and tend to make odd strangled noises. It’s important to remember this:


Just because having piles of animal fur around the place is entirely normal, not everyone has realised this yet

6. Most meals come garnished with the odd stray strand of wool or if you’re lucky, cashmere

7. Absolutely every container holds fibre of some description 

8. When your other half (God bless Mr Weaving Heart) calmly accepts that whilst they are not able to leave anything lying around, you will leave a path of spindles, bags of fibre, random clumps of roving, piles of knitting, stitch counters, lazy Kates, odd bobbins and spindle bowls in your wake. You can usually work out where I was last sitting by the number of these items piled around it.

9. It’s not unusual to discover spinning fluff bunnies in your knickers

10. Dressing gowns are especially prone to collecting fibre, I’m usually attached to several ozs of roving, generally offset to my left (drafting) side

11. There are infinite places for your cat to snuggle down in.


12. The bath and/or sink is just as likely to contain wool as an actual person 

So there you have it, I’m clearly beyond help, maybe you’re not but why bother even resisting?!