M'aidez on a May Day?

It’s May, and Ehlers Danlos Awareness Month. As I’m ridiculously busy this month I’ll not write a new post on the subject (see below one I wrote in 2013), instead I’m taking part in the HMSA’s “Do A Mile for EDS” challenge. I’ll be swimming my miles, so there won’t be very many of them but I promise they are absolutely exhausting. If you’d like to help you can visit my fundraising page here: http://uk.virginmoneygiving.com/Blaadyblah, really - every penny helps us to help people with heritable disorders of the connective tissue, I've been touched by the generosity of those who've contributed already (Thanks guys, you're all awesome).

For EDS awareness month in 2013, I put together an informal FAQ… 

Q: What exactly is EDS then?A: Ehlers Danlos Syndrome is a group of connective tissue disorders caused by a defect in the way the body produces collagen. Because collagen is found throughout the body, EDS has a wide range of symptoms affecting many body parts and systems.

Q: Have you had it long?A: Yes. It is genetic. I’ve had it as long as I’ve had connective tissue and experienced symptoms all my life. The disorder was diagnosed in adulthood meaning much preventable damage had already been done. Fortunately, early identification of Hypermobility Syndromes (EDS is just one type) is now becoming more common and so patients can receive treatment and support before irreversible damage has been done. 

Q: Does it hurt?A: Yes, it hurts a great deal. My joints dislocate easily and often, causing damage to the muscles, ligaments and tendons. This damage heals slowly, if it heals at all before I next damage it. Accumulative damage over the years has left me with constant pain in some areas. I have good days and bad days. On good days I am in manageable pain and can if I’m careful, slowly manage basic household tasks – most things take me three times as long as they might someone who doesn’t have to sit and rest every couple of minutes to avoid passing out. On bad days the pain and muscle spasms are unbearable. I have TENS machines, various pills and gels that help with the pain, but I am rarely if ever pain free. 

Q: Is it like Arthritis?A: In some ways, yes. My joints are pretty good barometers, I often experience more pain and stiffness in the morning and evening, many of the superficial effects are the same. I have osteoarthritis in some joints caused by repeated damage. I have trouble with many of the same physical tasks, sitting, standing, walking, bottles, jars, doors, remote controls and so on. Many of the aids I use are designed for people with arthritis. People also tend to understand what arthritis means, which can make dealing with unwelcome curiosity much quicker. 

Q: Do people really bother you about it?Not all curiosity is unwelcome, of course, but there are only so many times you can answer “What’ve you done to yourself then?” before you run out of time to finish your shopping. The first two or three strangers who ask personal questions may get an answer, but I have a life to lead. I am no more obliged to provide medical information to all and sundry than anyone else is! Regular annoyances include “Oh, you can walk today, then?”, “You don’t look very disabled” and my perennial favourite “Must be nice to sit at home all day”. 

Q: Can you drive?A: Yes, provided I abstain from certain meds in order to do so. I had a lovely Focus (auto) which meant I could get out and about until recently, however like many other people with disabilities recent cuts mean I’ve had to let the car go as I’m not in a position to repair it, run it and eat. As a result I’m now almost housebound, which is affecting my general physical and mental health for the worse.

Q: So what are They going to do about it?A: There is no cure, no magic treatment or surgery that will fix me. I do regular physiotherapy, wear orthotic insoles and brace vulnerable joints when appropriate and use a variety of pain control techniques and medication to control some of the more unpleasant symptoms. My local hospital and surgery manage my medications and monitor my general health. Self management is key with EDS, we learn how to treat our injuries and tend to go for medical advice only with new or especially difficult problems. 

Q: Will you end up in a wheelchair?A: I’m already a wheelchair user. Like most wheelchair users I have a limited ability to walk. I am not paralysed and cannot always propel my chair due to problems with my upper body. Sometimes I use my chair, other times crutches, a pole or a rollator. 

Q: Is everyone with EDS like you?A: Nope. Some people experience few if any problems due to EDS, we’re all different. I don’t suffer with digestive problems to anything like the extent some of my friends do. EDS has affected my teeth terribly while others have pretty pearly whites. That said, we all have a lot in common too. Generally we all bruise easily, scar oddly and spend a lot of time tired and sore. It has been noted that many of us look alike, to the extent we’re often taken for relatives by strangers. 

Q: That sounds rubbish, how come you’re so perky?A: I don’t get out much. I try very hard not to be a grump when there are other people around. I may look perky enough while chatting with an acquaintance at the shop but that does not mean I’m suddenly cured. You just learn to live with the pain and cope, some of the time. It is possible to be in pain and happy at the same time, though it isn’t always sustainable for very long. No-one sees me an hour or so later when I’m hiding under a duvet gritting my teeth and counting down the minutes until I can next take pain meds. 

Q: What’s with all the Zebra stripes?A: In medical school, doctors are told that when they hear hoof beats, they should look for horses rather than zebras, meaning they should look for an everyday common or garden cause for the patient’s symptoms rather than a rare or exotic condition. In the case of EDS, the rare condition is usually the cause of what might often present as a fairly common or simple problem – and those problems can be far more serious than they initially seem. So we adopted Zebra Stripes. 

Q: What can I do to help?A: Join, or donate money to The Hypermobility Syndrome Association who work tirelessly with the medical community to improve treatment and awareness of the condition, teach schools how to help affected students participate safely in PE and other activities, and run support groups all over the UK. They’re also actively involved in research into EDS and other Hypermobility Disorders and work closely with other organisations dealing with long term health conditions. If you know someone who has EDS ask them how you can help, we’re all different, and often don’t need the same assistance from one day to the next. 

Q: Oh yes, last but not least… the personal questions most people want to ask…A: Yes I can, yes it does and no I will not demonstrate!

Owl, as yet unnamed.

Last night I went out into the wide world. I drank tea, laughed and ate chocolate at my friend's church which holds an occasional craft night. This little guy is probably the first (non mending) needlework I've done in ages. My hands were shaking terribly so he isn't as neat as I'd like, but if I waited for steady hands I'd never get anything made.

Fortunately the rain seems finally to have wandered off. I'm glad as I've been unable to knit, or play Scrabble for days and I was starting to get withdrawal symptoms. Not to mention a queue for socks!

I am no longer a car owner. Didn't get much for it, but it is a weight off my mind and I can't say I'll miss the running costs. I noticed as I signed the paperwork that I registered it on the 16th of May 2006, exactly seven years. Farewell Ollie. I did hear a roll cage will be fitted by Sunday. I hope so, I'd like to think it will go out in a blaze of glory, racing round a rally or banger track.

Ehlers-Danlos is to May as a dog is to Christmas....

May is Ehlers Danlos Awareness Month. I've been asked about how EDS affects my life a number of times in the last week or so, people are curious and that is good. It beats being called a circus freak, a health and safety liability or on at least one occasion being cheerfully informed that were I a dog or a horse I'd be best put down.

For EDS awareness month in 2013 then, I've put together an informal FAQ...

Q: What exactly is EDS then?

Ehlers Danlos Syndrome is a group of connective tissue disorders caused by a defect in the way the body produces collagen. Because collagen is found throughout the body, EDS has a wide range of symptoms affecting many body parts and systems

Q: Have you had it long?

A: Yes. It is genetic. I've had it as long as I've had connective tissue and experienced symptoms all my life. The disorder was diagnosed in adulthood meaning much preventable damage had already been done. Fortunately, early identification of Hypermobility Syndromes (EDS is just one type) is now becoming more common and so patients can receive treatment and support before irreversible damage has been done.

Q: Does it hurt?

A: Yes, it hurts a great deal. My joints dislocate easily and often, causing damage to the muscles, ligaments and tendons. This damage heals slowly, if it heals at all before I next damage it. Accumulative damage over the years has left me with constant pain in some areas. I have good days and bad days. On good days I am in manageable pain and can if I'm careful, slowly manage basic household tasks - most things take me three times as long as they might someone who doesn't have to sit and rest every couple of minutes to avoid passing out. On bad days the pain and muscle spasms are unbearable. I have TENS machines, various pills and gels that help with the pain, but I am rarely if ever pain free.

Q: Is it like Arthritis?

A: In some ways, yes. My joints are pretty good barometers, I often experience more pain and stiffness in the morning and evening, many of the superficial effects are the same. I have osteoarthritis in some joints caused by repeated damage. I have trouble with many of the same physical tasks, sitting, standing, walking, bottles, jars, doors, remote controls and so on. Many of the aids I use are designed for people with arthritis. People also tend to understand what arthritis means, which can make dealing with unwelcome curiosity much quicker.

Q: Do people really bother you about it?
Not all curiosity is unwelcome, of course, but there are only so many times you can answer "What've you done to yourself then?" before you run out of time to finish your shopping. The first two or three strangers who ask personal questions may get an answer, but I have a life to lead. I am no more obliged to provide medical information to all and sundry than anyone else is! Regular annoyances include "Oh, you can walk today, then?", "You don't look very disabled" and my perennial favourite "Must be nice to sit at home all day".

Q: Can you drive?

A: Yes, provided I abstain from certain meds in order to do so. I had a lovely Focus (auto) which meant I could get out and about until recently, however like many other people with disabilities recent cuts mean I've had to let the car go as I'm not in a position to repair it, run it and eat. As a result I'm now almost housebound, which is affecting my general physical and mental health for the worse.

Q: So what are They going to do about it?

A: There is no cure, no magic treatment or surgery that will fix me. I do regular physiotherapy, wear orthotic insoles and brace vulnerable joints when appropriate and use a variety of pain control techniques and medication to control some of the more unpleasant symptoms. My local hospital and surgery manage my medications and monitor my general health. Self management is key with EDS, we learn how to treat our injuries and tend to go for medical advice only with new or especially difficult problems.

Q: Will you end up in a wheelchair?

A: I'm already a wheelchair user. Like most wheelchair users I have a limited ability to walk. I am not paralysed and cannot always propel my chair due to problems with my upper body. Sometimes I use my chair, other times crutches, a pole or a rollator.

Q: Is everyone with EDS like you?

A: Nope. Some people experience few if any problems due to EDS, we're all different. I don't suffer with digestive problems to anything like the extent some of my friends do. EDS has affected my teeth terribly while others have pretty pearly whites. That said, we all have a lot in common too. Generally we all bruise easily, scar oddly and spend a lot of time tired and sore. It has been noted that many of us look alike, to the extent we're often taken for relatives by strangers.

Q: That sounds rubbish, how come you're so perky?

A: I don't get out much. I try very hard not to be a grump when there are other people around. I may look perky enough while chatting with an acquaintance at the shop but that does not mean I'm suddenly cured. You just learn to live with the pain and cope, some of the time. It is possible to be in pain and happy at the same time, though it isn't always sustainable for very long. No-one sees me an hour or so later when I'm hiding under a duvet gritting my teeth and counting down the minutes until I can next take pain meds.

Q: What's with all the Zebra stripes?
A: In medical school, doctors are told that when they hear hoof beats, they should look for horses rather than zebras, meaning they should look for an everyday common or garden cause for the patient's symptoms rather than a rare or exotic condition. In the case of EDS, the rare condition is usually the cause of what might often present as a fairly common or simple problem - and those problems can be far more serious than they initially seem. So we adopted Zebra Stripes.

Q: What can I do to help?
A: Join, or donate money to The Hypermobility Syndrome Association who work tirelessly with the medical community to improve treatment and awareness of the condition, teach schools how to help affected students participate safely in PE and other activities, and run support groups all over the UK. They're also actively involved in research into EDS and other Hypermobility Disorders and work closely with other organisations dealing with long term health conditions. If you know someone who has EDS ask them how you can help, we're all different, and often don't need the same assistance from one day to the next.

Now, if you'll excuse me, I need to go take medications and work

Mary, Mary

Grandma was partway through knitting a square for a blanket she'd been working on the evening she died. She'd set it aside to read the paper but the project bag was right by her side. She's joined together three rows of seven squares and added the first and last squares of the fourth row.

She left a pattern for a small child's jumper in the bag but no indication of who it was for or which yarn she meant for it. Until anyone comes forward, I'm going to carry on where she left off with the blanket until I've used up the yarn she had. I don't often knit, so it is a novelty and an honour to be knitting this up for her.

I've also inherited her various needles and some other lovely notions including a latch hook and  some beautiful chunky wooden knitting needles. There is a row counter and a needle case too, as well as her knitting bag.

Underneath Grandma's work is the More Sunshine blanket I've been working on and had finished joining on the train home from Darlington. I'm forcing myself to sew in the ends before starting in on the border section though, so had taken a break to do a test row on the train home yesterday when I took this. It seems we shared the same tension in our knitting as well as our enduring love of tea, Scrabble and fruit pastilles.

Greeneva

Greeneva is a shawl I'm working in lace weight cotton of jade green. The pattern (Eva's Shawl, by milobo) is lovely to learn and work so I'm really enjoying it. Hopefully I'll get a chance to do some more work on it during the next day or so, though the pattern is probably a little fiddly after the eyelet row to work while on a train. It is already a few rows larger than pictured and would be considerably larger still were the light a little better in the afternoons.

I've a second Sunshine blanket on another hook which will travel with me also as I need to get it finished and sent. I have the pattern on my phone and the work now is joining and a granny square to border the whole which is easy to hold. I also have books and am daring to hope I may get to read Frankenstein on those parts of the journey where crochet isn't an option.

The end of the week will be spent enduring the consequences of the trip, most likely in bed with a notebook, sketching up the my next few projects. I'm almost settled on my Christmas projects now.

Bend One's Steps: New art in the old school.

When I was small Chequer Mead was still one of several primary schools serving the Sackville side of town and many of my peers were students there. I have vivid memories of walking with my class past East Court Mansion for joint arts events held there, always being struck by the sheer prettiness of the school and the odd situation of the buildings sat either side of a busy road meaning that at lunch time each and every student trotted across the road to eat and back again for their afternoon lessons. A Youth club was held in part of the premises long after the school closed and I think I recall the town marching band using the buildings for rehearsals during the nineties. 

Some fifteen years ago, just as I moved away from the town a small theatre was built onto the back of the old building obscuring the once familiar view of the school and yard from the top of Blackwell Hollow. I now approach from the other direction  passing the church, college and water tower. Eventually I park in the old playground before crossing over to the still recognisable main school buildings, now home to an intimate and thriving arts centre which to my eternal delight holds regular textile art exhibitions by local individual and Guild artisans in the light and spacious Greenstede Gallery. 

I very nearly missed this most recent exhibition, Bend One's Steps as it didn't appear on my calendar but was alerted by Mum who'd called by at the weekend and been impressed by the work. Jude Kingshott and Penny Watts are mixed media textile artists exhibiting together for the first time. Kingshott was warm and friendly, taking time to patiently explain the processes she uses in her work. Watts unfortunately was unavailable due to an upcoming exhibition elsewhere and so I have concentrated here on Jude Kingshott's work.  

Prayers One and Prayers Two by Jude Kingshott

Kingshott's influences are immediately apparent. The first of her works to meet my eye on arrival were inspired by a trip to Tibet and introduce the rich colours and exquisite detail present everywhere from the tiny Prayers One and Prayers Two displayed almost casually on a window sill by the entrance. These central themes of rich symbolism, the repetition of chants as patterns and the wild partnerships of colour continuing into her larger works Mandala and Tibet One hanging in the main gallery.

Isaac and Eban by Jude Kingshott 

Some deeply personal works were on display too - a carefully layered piece focussed on Kingshott's late Mother and the more playful paired photographic pieces Isaac and Eban, her much adored grandsons, each layered with printed vehicles and animals to suit their characters. Other relatives are represented around the edges making the whole a beautiful family record.

Isaac detail showing Car, Moped and Boat

The boys are not for sale of course, but their like can be commissioned using your choice of photographs and themes. They take time to produce as layers must be left to settle for days at a time, but there is still time to discuss your requirements if you know someone for whom such a piece would be an ideal Christmas gift.

Other works are evocative of woodland, or the ocean and many contain tiny hidden details caught not at first glance but only later on deeper reflection, appropriate given she credits her Buddhist practise. 

Daimoku One and Two - by Jude Kingshott.

Many are for sale (though the number available dwindled appreciably during my visit) and there really is something for every pocket, smaller works being as accessible as just twenty pounds or so and her larger more complex works proportionately more. 

I'll be back at Chequer Mead in the next few days to catch up with the recent works of the Tunbridge Wells Embroiderers' Guild in their now regularly anticipated show Losing The Thread which runs till Wednesday 2nd November 2011. Tuesday's little trip has only whetted my appetite for more and I shall be bursting with enthusiasm for new projects soon. 

I'm very pleased to have caught this 'bonus' show beforehand though. I'll certainly be scouring the listings a little more thoroughly in future - to think, I almost missed it! Somehow I think I'll be seeing a lot more from Jude Kingshott in the future. 

Detail of Tibet One, by Jude Kingshott.

More Sunshine

I've been crocheting another Sunny Snuggle (Pierrot Angel Blanket) of late and the intended recipient arrived safely yesterday. She looks to have a shock of curly dark hair and is of course utterly beautiful. I look forward to meeting her, though not until my voice has returned to normal and I'm in a fit state to properly welcome her!

Meanwhile I am no longer quite so plague ridden that I can't crack on with her blanket. Of the sixty-four squares that make up the central panel fifty-six are joined in seven rows. I shall join row eight, sew in the ends and begin the foundation of the edging tomorrow.

Between sessions I'll be working out when I can return to The Greenstede Gallery. Yesterday's last minute visit was wonderful, but has only increased my resolve to get back there next week to see what the local Embroiderers' Guild have been up to over the last year or so. I have missed my trips over there and intend to resume them now I'm a little more mobile again.

My thoughts on Bend One's Steps will have to wait for another time, my eyes are drooping and I doubt I'm long for this level of consciousness. I've been taking a notebook to bed with me of late - I'm doodling in my dreams, which while odd is most enjoyable.