I want to say thank you to a few people and also give you all an update on the CFS/ME. So, seeing as this blog is all about beads, I’m going to put this in beading terms!
The whole of June has basically been a month of Frog Stitch (for those of you who haven’t come across this terms before, that’s ‘rip it, rip it’!). Basically I’ve been undoing my life – or the CFS/ME has been undoing it for me. This basically brings out the same emotions that we all feel when doing a lot of Frog Stitch. Feeling cross that you’ve made the mistake and now have to undo it. Feeling frustrated that you seem to be moving backwards when you want to be moving forwards. Feeling confused because maybe you’re not sure how you made the mistake. Maybe you don’t know how to put it right, so you may have to do more Frog Stitch in future if it doesn’t work out properly when you get to re-building. The other thing about Frog Stitch is we often see the mistake, but try to find a cheat to fix it before finally giving in to ripping it out. Sometimes the cheat works, but often it gives a less-than-perfect result and you have to rip it all out anyway. In case you’re wondering, this is a metaphor for February to May in my case: lots of warning signs, some of which were new, so I didn’t recognise them as such, some I thought I could patch up because I have been quite adept at managing the CFS/ME since 2012.
This is one way of looking at Frog Stitch. What would I advise someone if I was teaching them? Well, take the positives. The reason you’re doing Frog Stitch is because you realised there’s a mistake and you want to correct it, learn from it and make something better.
So, at the beginning of June, my energy crashed and I was forced to stop for a few days. Rather than admitting the need to take a huge step back, I tried to patch up and start carrying on. I crashed again, a bit worse this time, still tried to patch up, then caught the virus that got in the way of doing Jewellery Maker TV. I then crashed to an even lower level, taking me back to a point I thought I had left behind twelve years ago. Finally I was forced to admit that I had to stop completely, take stock, Frog Stitch and work out how to rebuild. So that’s where I am now, resting lots, starting to see tiny, tiny improvements in my energy and starting to pace myself. I’ll talk about that more later on for anyone who is interested. For now, I want to talk beads and say thank you to lots of people.
Thank you to the magazine team
Thanks to support from the rest of the team in the office, we’ve managed to get the 
next issue of Bead and Jewellery Magazine off to print. Every issue is a team effort, both within Ashdown and also with the designers and I am so grateful that all of them have been kind, understanding and just so supportive, so thank you!
The Rococo Chilli Necklace (pictured above) was one of those designs that just evolved, so I think maybe that’s why I like it so much! I didn’t have a pre-conceived idea in my head, so nothing to judge it against. I see over and over that I’m not the only one who is so critical of my own work. We all do it. I think it’s because we imagine an idea and of course, in the head, it’s perfect. Once you come to make it you are aware of all the flaws and difficulties: the beadwork isn’t perfect, so somehow it compares unfavourably to the image in your head. If that’s how you feel about your work, then put it away in a drawer or box for a couple of weeks. When you take it out and look at it with fresh eyes, you’ll appreciate what you have created.
A few more thanks
I mentioned in my last blog that I’ve had to cancel a lot of teaching and I feel bad that I’ve let 
people down. well, I want to say a huge thank you to one of the ladies from Burnham Beaders. I should begin by explaining that I’ve met a few of these ladies at workshops at Stitchncraft and Missenden Abbey. Well, one of them, Anne, was kind enough to write and offer to teach the group the poppies from my pattern as she already had the pattern and had learned the French beading at a couple of my workshops. It was so kind of her to step into the breach and I had a lovely message last week to say that the ladies had enjoyed their day and made some beautiful poppies. In fact, I think Anne improved upon my pattern by adding some extra petals to the poppy, as you can see in the photo!
I am also very grateful to the group of ladies I teach every week. They’ve been so kind and patient as I keep having to cancel classes. I am so grateful for their lovely messages and kind offers of help and support. I’m looking forward to getting to see them soon I hope.
Lastly, a quick book update and another thank you. Those of you who have been patiently waiting
for your copies of Bead Flowers and Corsages will be pleased to hear I’m now proofing the final manuscript. It looks fabulous and with any luck, if I keep pacing myself well, it won’t be too much longer before it’s ready. So my last thank you is also to my publisher, Vivienne. I’ve been working with her for a few years now and she has become a friend as well as being my publisher. Not only has she done her usual brilliant job editing the book, but she has been such a support to me as well.
So, all in all, I’m very lucky to have so many lovely, kind, people in my life. At a time when the world seems full of chaos, upheaval and violence, it is worth holding onto that and reflecting on the good things. This is all my beading news for now, but if you are interested in CFS/ME, I’m about to write more about that below. Thank you to everyone who responded to my last blog with messages of support and interest in what this illness means. To those of you leaving me here, I’ll be back with another update soon – thank you for reading!
CFS/ME
There’s so much I could say and would like to say here, but I don’t want to bore you all, so I’m going to try to keep to the most interesting basics. Firstly, returning to that Frog Stitch analogy; once I finally accepted the huge severity of this crashed and stopped feeling so bad about cancelling everything and stopped trying to force my way through, I decided to try and use this as a way to rebuild with stronger foundations. Part of the problem with this illness is the apparent lack of knowledge and research. It’s hard to fix something when you don’t understand what’s broken – hard to fix that beading mistake when you don’t quite understand the technique you’re trying to use.
Well, there is more knowledge of CFS/ME out there than many people realise. Typically when we’re ill, we rely on our doctor to pass on the knowledge we need, so if they can’t tell us anything, we assume it’s because the knowledge isn’t there. In fact, there is some research being carried out. There are some private specialists with a wealth of experience and knowledge about the illness. Some of this is disseminated in random press articles: there have been a few in recent years with different labs identifying different patterns in symptoms or possible causes. There are ME groups who are pretty good at keeping track of the research and the ME community is very proactive in spreading the word. As a result of this, I’ve ended up working my way through a great book by Dr Sarah Myhill (‘Diagnosis and Treatment of Chronic fatigue Syndrome: It’s Mitochondria, not Hypochondria’). If you are a sufferer or you are caring for someone with this illness, you can also find the information from the book contained on this website.
Dr Myhill has been treating CFS for over 30 years and has helped a lot of people. The good news is she believes this has given her a picture of what causes the illness (mitochondrial function which I talked about in my last blog), she has identified tests that can be done to get a picture of where the problems are in any one sufferer, and has a helpful treatment regime. The bad news is firstly, none of this is available from or sanctioned by the NHS and Dr Myhill is now too over-run with patients to take on any more. The second piece of bad news is none of this is quick or easy to fix. None of it presents a ‘cure’, just a means of controlling the problem to allow the body to gradually regain lost functions until a better (good) quality of life is attained. Reading the book gives me a framework for re-building and some new ideas I can try in the hope that I can move forward to an even stronger base than I managed to reach in 2012, so fingers crossed and watch this space!
At the beginning of this blog I also mentioned pacing. That’s where I am now. I have the tiniest bit of energy and I’ve been demonstrating to myself that if I use it wisely I can move forward. At best I can see tiny signs of improvement. At worst, I can do a bit without getting worse. In an ideal world I would be resting completely until I have no symptoms and only then starting to pace very gradually. In the real world this isn’t practical, so my best bet is to rest as much as I can and stop whatever activity I am doing as soon as I start to notice symptoms worsening.
So, what does pacing look like for me now? Practically at the moment I need to do the following in each 24-hour period: sleep for 9-10hours (ideally getting to bed by 9.30pm), prepare and eat 3 nutritious meals plus 2 snacks and maintain a basic level of hygiene (let’s say this all takes about 4 hours in total), have a 2 hour nap in the afternoon. So that leaves me with about 8 hours. For every task I carry out, I need to then rest to make up for the energy I’ve just used and hopefully try to bank some spare. So I’m currently trying to work towards 20 minute windows of activity followed by 40 minutes of rest. I have something like eight 20 minute periods of activity per day, so a total of 2 hours 40. This isn’t as exact as I’ve described it: some periods of activity may be longer, some shorter. Likewise with the rest. Some days I find I can do a bit more, some days a bit less. Gradually over time, I should be able to increase the length of the activities and reduce the length of the rest. All this means I have to be very selective in the activities that I actually do, compared to what I would like to be doing. By ‘activities’ I mean beading, checking emails, magazine work, writing up patterns, household chores, talking to friends, watching TV and reading. There are some ways I can reduce my energy output, putting less strain on my body. For example writing or proofing whilst lying down instead of sitting. Proofing from print outs instead of on the computer screen (using the computer is actually very tiring). The grand plan is that little by little I increase my energy by ‘banking’ more than I’m using. Alongside the careful pacing, by investigating and trying some of the ideas I have been researching, I hope to be able to get my body into a state where it is healing itself so long-term my mitochondrial function improves and I am able to live ‘normally’ and without feeling permanently tired and ill, so we shall see…
None of this is easy: there is often no obvious linear progression and any progress I make is painfully slow. It’s difficult explaining that when people are kind enough to ask if I’m feeling better, or seeing that I’ve done some work and understandably assuming that’s a sign I’m making progress. I mostly succeed in staying positive and focusing on the good things in my life, but I do have days when I feel angry, days when I feel like curling up in a corner and crying, days when I wish I could go to sleep and not wake up and have to deal with this any more. I guess that’s just what you call being human!
Finally, in case you’re wondering, I’ve written this blog over a period of several days and only after I finished what I had to do for the magazine! Now I’m off for a long rest…
