fibromyalgia – The Sick Chick's Constantly Crafty

I can’t believe it’s not Monday

We had a nice Bank Holiday Weekend (three-day weekend) here, the weather actually warmed up — rather too fast IMO — and the sun has been coming out more than in the last nine months put together. Which has actually made photography a little difficult, I’m not used to full, bright sun!

Anyway, important reminder: My 5K walk for Fibromyalgia research is on Saturday so please donate now! If you are new to this blog, Fibro is one of the many diseases that I have and walking 5K is well beyond my normal limits but it was important for me to do this as it’s a very worthy cause. You can read more about my struggle on the donation page linked above.

So meanwhile, back to other things. We went to the National History show which was genealogy, archaeology and military history all together in one Expo. Once again I was shocked that no scrapbooking suppliers were there as that seems like a great audience. We saw some of the Time Team members (Tim, Tony and Phil) doing various presentations and generally found out about new stuff out for the genealogy market, etc. The only thing we bought was mead from Three Drunken Monks but then we went to the huge Whole Foods in Kensington to stock up on supplies.

I’m still recovering from that day even though I was in the chair. I also seem to have come down with some kind of stomach virus which is unpleasant to say the least. So my crafting has been pretty minimal. I made two coffee cozies (which I would show you but my camera doesn’t like bright sun apparently, the colours went all weird) and started a legwarmer for a friend but I started getting hotspots on my fingers so had to give it a rest. When I can’t knit or do something productive I feel guilty or at least out of sorts while sitting and watching tv or movies but sometimes my body just needs the rest and there’s nothing I can do about it.

I’m off to lay down again and get more rest. I need to plan the route for Saturday’s walk ASAP and just spend the week resting up that’s going to be very, very taxing. But I have so much crafting to be done in the next few weeks that I’m already feeling the stress and need to get things done for the sake of my brain,so we’ll just have to see what I can manage in between naps!

Malabrigo Organic Cotton: The Order

Many thanks to Daniella for pointing out that Malabrigo Organic Cotton is now available at WEBS. It’s pricey, but with the pound being strong it worked out to be affordable for me. I also took the time to get some of my new everyday-workhorse favourite yarn, Debbie Bliss Alpaca Silk (I need to photograph those FOs), in a deep purple colourway (half-price), some more Arucania Pima Cotton (not organic, but at least fair trade, half price) to go with what I bought last year, and lots of onsies and twosies of other sale items for a total of £52 including shipping (to my US address). t gave me a budget of £50 since aside from Project Superstar (2 skeins, now used) and the Paris trip (2 skeins), I haven’t really bought yarn since the after-Christmas sales.

My gothpoints are utterly in decline as once again I bought really bright colours 🙂 I even considered several blacks and then thought “Well what would I make with that?” (as I haven’t tackled fair isle yet to do the piratey things). But in my defense, many of these yarns will be used for presents for children and I think children need eyepopping hot pink, right? 😉

For some reason this blog is the top Google hit for Malabrigo Cotton. How odd. I’m sure I will lose that status in the future as others come to know and love this yarn, but for now I felt obliged to order two skeins of the organic. I plan to crochet a bag out of it. Guess I’d best get cracking practicing my crochet first!

I do believe in using organic cotton as much as I can afford to. It’s hard when the price tag is up to ten times more than non-organic (considering that I have a mill that is localish to me in the States that at least hits my low-airmiles button, which most organics do not). It’s not so much about the environmental aspects in an altruistic sense but because I believe that the widespread use of pesticides is part of the reason why fibromyalgia and other neurological disorders are so much more common nowadays. (Remember to sponsor me for my walk for Fibro research!) Cotton growing accounts for 50% of the world’s pesticides which is why it is most important to buy organic cotton to prove to the rest of the industry that it can be done. But, I guess the lack of pesticides reduces the yield which accounts for part of the increased cost, although I am sure the rest of it is just the organic fad, alas. But Malabrigo is a higher-priced brand anyway and is fair trade as well as organic and these yarns have only natural dyes. Pity about the airmiles though 🙁

So with looms, swap goodies and now yarn coming my way, I think May 25 is going to be a lot like Christmas 😉 I can’t wait to get there and see all of my stuff. But first, several projects to finish and a swap package to make!

In lieu of a real post

This is a self-portrait from Meez.com. You’ve probably seen it on other blogs, as there is a knitting animation that you can have your virtual self doing 🙂 This is pretty close to accurate, but of course all avatars look better than the real thing! Here you see me dressed as usual in a t shirt and pyjama pants in a terribly messy room. I’m not usually in the chair in the apartment (in fact never, there isn’t room here), but they didn’t have an option for canes or crutches or my usual of leaning on the walls as I slink around… Usually if it’s less than 20 meters I don’t bother with a cane, so that can confuse some people who see me walking “normally” (like at my felting course this weekend which was in a small place) and then hear me talk about using a wheelchair.

In other news, I have found a new charity to knit for (after I get caught up on the projects already on the go). It’s pretty near to my heart as it serves people with neuroendoimmune disorders including fibromyalgia, chronic fatigue and multiple chemical sensitivity. (I have two of those for sure, maybe on the middle one.) Anyway, having been the person begging for warm hats a few years ago (when I first had to give up having hair) I feel it’s the perfect place to give back. P.A.N.D.O.R.A. is the organization, but I couldn’t find their request for knitted items on their website, only on their page on Liom Brand Yarns’ charity finder.

OK typing this has killed my fingers so I guess they need more rest. I’ll try to write up about the felting course tomorrow, achy fingers crossed! 🙂

On the Soapbox: Fibromyalgia

Warning: No crafting content here, but perhaps some frothing at the mouth.

I can’t even begin to say how much it irritates me that another round of Fibromyalgia-denial has begun. What’s a bit odd is that they are using the US FDA’s approval of a drug to treat fibro (which was months ago) as their excuse to start attacking it (and by extension, us) again. It’s the same old tired refrain: there’s no test for it so it can’t be real. Even one of the docs who invented the current diagnostic guidelines (the closest thing to a test we have) has recanted and said he no longer believes in it. (See this NY Times article for what’s being said.)

HELLO, smug doctors of the world! In the seven years I’ve had a fibro diagnosis (admittedly, my diagnosis is weak: it may be chronic fatigue syndrome instead and anyway it’s not my primary illness) the advances in diagnostics have been impressive. No, we don’t have a foolproof test yet, but there *are* biological markers in the majority of patients. Plus, chronic myofascial pain (closely related to fibro) has been discovered to be discernible on a special MRI, thus making it “real” in the eyes of these same doctors.

I suppose the real problem is that most of the docs who did believe in it are rheumatologists, but recently it has been shown that fibromyalgia is a neurological condition. This baffles the rheumies, but the neuros aren’t up to speed yet. In any case, the FDA is on board and Pfizer is plastering the airways with “public service announcements” (read: sly ads for Lyrica, the approved drug), so public opinion is swinging our way.

But this just goes to show that doctors are not infallible. Indeed, far too many of them have sticks up their bum. And that it’s sooooo very important to find a doctor that believes both in you and in your diagnoses. While the NHS here in the UK has no trouble with fibromyalgia, I know there are some GPs who are still resistant. I’m blessed that I don’t have one of those! I’m also lucky because Lyrica (pregabalin as it is known here, which is the generic name) is *not* yet approved for the treatment of fibromyalgia here, but my neurologist gave it to me anyway for the neuropathic pain that may or may not be fibro-related. So I get the benefit of the meds without having to wait for more drug trials, etc. Maybe that’s just reason number one million and four why the NHS rocks my world. Sure, you have to be a patient patient as waiting lists can be a pain, but it’s better healthcare than I ever had in the US (and I had health insurance and HMOs that were supposedly the best healthcare money could buy).

I’m going to get off my soapbox now and maybe go photograph some hats. 🙂