Tag: fibromyalgia

Hello, goodbye

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I’m hoping that a few people will have followed me over to this new blog location… hello to those of you who’ve joined me!

I feel as though the sentence above should have an extra comma in it: art, books, chocolate and young men. Either way, the sentiment stands. I have a young man (my husband will be 37 tomorrow, to my 41), and goodness knows I get through a lot of chocolate, but my life has been sadly lacking in art, books, and indeed art books, lately.

Things have been very quiet around here, mainly because I haven’t been doing very much apart from going to work, coming home, trying not to be ill, and making hats. The trying not to be ill part isn’t going very well at the moment, so I need to make a few changes to try and improve matters.

I had already planned to take a sabbatical from the hats during February, to sit back for a while and have a bit of a think about the direction I want to follow with them. It turns out I’m going to need a bit more time than that, so the hats are going on the back burner for a couple of months. My boss at work was good enough to suggest I took some annual leave at short notice, so I’ve spent a few days curled up on the sofa, reading and trying to relax. I have a couple more days before I go back, which are reserved for celebrating Paul’s birthday, and trying not to be ill. Hopefully they’ll also include plenty of books and chocolate.

Once I’m back at work, my remaining free time is going to be selfishly spent for a while. Sewing for myself, knitting for myself, picking up my long-abandoned Aromatherapy course, and probably delving back into some art books as well. I’m not sure at the moment how long it’ll take me to get back to the hats, but I do intend to blog about what I’m doing in the meantime. (She says, having posted barely anything for months.)

Anyway, here’s a big thank you to those of you who’ve chosen to stick around – hopefully the rest and relaxation will perk me up a bit soon.

Ups and downs

"My face hurts" First drawing with Sketches on the ipad, 17/02/14

So, last Friday was Valentine’s Day. In our continued tradition of unequal gift-giving, I gave my husband a card, and he gave me an iPad! Admittedly he was going to give me the iPad anyway – he’s just upgraded to a new one, and I’ve inherited his old one with a nice new case. But he certainly gained a great deal of brownie points by wrapping it up in lovely paper!

I’ve been downloading lots of exciting new apps, mostly ones for drawing and sketching with. I’ve chosen a few free ones that I can try out, before I decide which ones I like best and want to pay for. The drawing above was done with an app called Sketches, and it mirrors the theme of this past week. It’s titled “My Face Hurts”.

Fibromyalgia + toothache = unhappy face.

Also on Valentine’s Day, I had to go to the dentist. Luckily we didn’t have a romantic meal planned for the evening, because I ended up having a tooth taken out! Four days later it’s still really painful, and the fibromyalgia doesn’t like it at all. Much to my frustration my face now acts as a warning beacon when I’m in a lot of pain, and this is how I came home from work today. Lovely! Given that I have a public-facing job, and it’s half term this week, I can only hope that I’m not scaring too many children away from the museum!

Green Cardigan

This rather different picture of me, from all the way back in 2008, is the cover photo for the first knitting pattern I designed. After a comment left on the blog by someone trying to track down a copy, I was prompted to open my own Ravelry store, and this is currently the only pattern in it.

I do have three existing patterns that I can add (also available in the Tutorials section to the right there), but I need to work out how to do that without duplicating the original patterns, as I seem to have done with this cardigan. I also have two completely new patterns ready and waiting, but they’re both waiting for photographs. All of my test knits were given away as Christmas presents, so I need to sit down and knit some new ones so that I can have a photo shoot. The temptation to dye my hair pink for the occasion is now extremely high!

Kiss Me Deadly – Paradise Girdle


Photo © Kiss Me Deadly

A few weeks ago, one of these turned up in the post. No, not a lovely blonde lady with a pointy dagger, but a Kiss Me Deadly Paradise Longline Girdle.

Given that during my recent wardrobe purge I threw out every single piece of uncomfortable lingerie I owned (which to Paul’s dismay was nearly all of it), this might seem like a bit of a bonkers purchase. And it is, a little bit. But in its favour, it’s stretchy, it doesn’t dig in anywhere, and best of all – you can colour it in.


Photo © Kiss Me Deadly

Yes, you read that correctly. The design itself is black and white, but every Paradise girdle is supplied with a set of paints and a brush, so you can paint your own. I chose the pearlescent paints, because I like the subtle effect in this picture, but you can also choose from sparkly, glittery, or glow in the dark! Kiss Me Deadly are awarding prizes for pictures of the finished result, so I’d probably better get a move on and colour mine in!

I do need to make a small alteration to mine first though. Despite the advice on the KMD website to order this particular garment by your waist size rather than your hip measurement, I went the other way. This means it’s a little bit too big for me at the top, but I’m glad I went for the larger size otherwise I think it would have been too constricting for me at the bottom. Please note – my body is a very odd shape, thanks to 20 years of IBS and three lots of abdominal surgery, so if you’re buying one of these I would still recommend following the fitting advice on the website! However, I have the technology to take in the side seams at the waist without disrupting the technical construction of the girdle, so I’m going to do that before I get the paints out.


Photo © Marks and Spencer

Recently, Catherine wrote an article for The Lingerie Addict about What It’s Like to be a Woman with a Disability in the Lingerie Industry. This was particularly well timed for me to read, having just thrown out all my bras and replaced them with distinctly un-glamorous (but tolerably comfortable) brightly-coloured cotton crop tops from M&S. (Yes, they’re for children. Yes, that makes me feel weird.) Some of my health issues are different from Catherine’s, some of them are similar. And let’s just say that the multiple mirrors in a Marks & Spencer changing room do very little for the self-esteem of a woman who’s almost forty, overweight, in constant pain, and trying on children’s underwear as something of a last resort. That was not the most enjoyable morning I’ve ever had.

But, I did realise that if these crop tops are comfortable enough, then I could probably get away with one of Kiss Me Deadly’s more unstructured bras, like the Van Doren. (I love the style of the Fifi, but just looking at that narrow band makes my ribs hurt!) If this is a picture of the back of the Van Doren bralet (which I think it is), that nice deep strap and wide elastic combination looks very promising indeed.

First things first though – time to make that alteration to the waist of the Paradise girdle, and then get the paints out! Honestly, clothes you can colour in? Best. Idea. EVER.

Psychedelic Dress

Psychedelic Dress

This is a test-run of Kwik Sew 3472, a simple jersey dress. It also has options for a knee-length version, a scoop neck and short sleeves. The fabric, I promise you, isn’t anywhere near as loud as it looks in this photo! In real life the colours are much more muted and dusky. I figured that any mistakes I made on this first try wouldn’t show up too badly against this very swirly pattern, but thankfully it seems to have come out pretty well! I think the only change I might make is to shorten it a bit, but I’ll wear it first and see how it goes.

I have nine metres of organic cotton jersey on order, ready to make three more of these – two black, and one purple. That should give me a basic work wardrobe that goes with most of my existing shoes and accessories. My fibromyalgia’s playing me up quite badly at the moment, which is seriously limiting what I can comfortably wear. Separates give me stomach ache. Anything that isn’t soft enough makes me itch. And frankly I need every scrap of my brain power to be working for me through the tiredness, not fighting against my uncomfortable clothes.

I realise this all sounds very dramatic, but unfortunately it just seems to be a fact of life for me now. Wearing uncomfortable clothes causes pain, which causes fatigue, and life’s too short to be exhausted because my stupid jeans gave me a blister. I’m sad and angry about it, because it seems as though I’m going to have to get rid of about 80% of my current wardrobe, including a lot of things that I’ve made for myself over the years. The thought of sending it all off to the charity shop makes me utterly furious that my body has decided to do this to me.

But hey, let’s look on the bright side. I get to make a whole new wardrobe of the softest organic cotton dresses.

Also, I have one really nice picture that Paul took of me at the Frome Steampunk Extravaganza. I’ll show you that one soon.

Fibromyalgia and Vitamin D

Vitamin D

This photo looks how I feel: rubbish, and a bit fuzzy.

I don’t want to get into a habit of posting about being ill (I do enough whingeing about that at the best of times), but the last time I did mention it a few of you were kind enough to get in touch, so I thought it would be nice to let you know what’s been going on.

I’ve had a bunch of tests – I scored 18/18 for fibromyalgia tender points – top marks for me! This basically means that I went OUCH every time the doctor prodded me in the 18 test places. Including under my shoulderblades, which is a place I don’t tend to get touched, so that one was a bit of a surprise! I also had lots of blood tests done. So many that I felt a bit like Tony Hancock. (“A pint? That’s very nearly an armful!”)

The results came back today – mostly clear, which was nice. No inflammation markers, no signs of connective tissue disease. Phew. One more test to go (an ultrasound on my worst wrist), but rheumatoid arthritis and lupus are pretty much ruled out. Excellent.

The one that did come back a bit surprising was the test for vitamin D. The usual levels are between 50 and 200 (50 and 200 what, I don’t know), but mine were, rather startlingly, 11. Eleven. Which is not enough, by quite a long way! It’s common for people in the UK to have low levels of vitamin D because the weather’s not exactly sunny (especially this year), but even “low” usually means around 40. Not eleven.

Symptoms of vitamin D deficiency can include things like joint, bone and muscle pains, chronic fatigue, and confusion. Which explains a lot. Thankfully it’s extremely easy to sort out! I’m now taking vitamin D tablets for 500% of the RDA, which I’ll do for the next six months. After that I should be a) feeling much better (fingers crossed!) and b) able to go down to a more sensible maintenance dose.

As for the fibromyalgia, the hope is that once the pain from the lack of vitamin D is under control, it’ll be a lot easier to manage. In the meantime I have three months’ worth of a very low dose of amitriptyline (10mg) which will hopefully help to break the pain cycle that’s going on between my body and brain.

I also have advice about diet and exercise and acupuncture and generally looking after myself, which should hopefully all help too.

So, I can expect to continue feeling a bit rubbish for a while, but once the vitamins start to kick in, hopefully all will be well. Hooray!