Sleep of the talking dead.

I walk in my sleep. I also talk in my sleep. Apparently I now take medication, answer doors and take calls in my sleep too. Yesterday was long and busy. I went out twice for the second time in a week. I’m sick (chesty cough), having trouble keeping my head up (Ehlers-Danlos) and so over stimulated that getting in from a gig last night sent me to wobbling to bed and then out like a light by two this morning. At around eight this evening I was woken by the phone and just like that a whole day was gone.

Today was supposed to involve knitting, sunshine, some work and large doses of kitten but instead I was woken by returning workers, had a kebab for breakfast,and am now watching MoTD confused by the fact it feels like lunchtime.

Worth it though. Even if it does mean I have to catch up – I’m told we have ice cream and tomorrow is technically weekend so I can rest up some, consolidate that epic sleep and eat all of the food before tackling my EDS Mile on Tuesday.

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

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, but instead direct your attention to this one from 2013.

This year, 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 page here: http://uk.virginmoneygiving.com/Blaadyblah

Or if you’re feeling in fine enough fettle to join in and help us reach our mileage goal there’s still plenty of May left to see how far you can get. Alternatively you could hold one of our Hypermobili-Tea events later this summer. I’ll be doing that too – I’ll need the cake after all that swimming…

Blaadyblah

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For EDS awareness month in 2013 then, I’ve 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…

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Born in the USA…

…to an English mother, my (half) American cousin is visiting. Last time she came, it snowed, the airport closing not much more than an hour after I’d collected her. Having spent her life in Florida, Alabama and New Orleans she’d never seen snow and got a white Christmas. This time she’s been able to experience proper English rain.

With a couple of days and a couple of pints to recover from the inevitable jet lag (I wake up with my dishes done, awesome), she’s gone up to London where I’m sure she’ll be causing all kinds of trouble. In her absence one of the cats has declared the top of her luggage the most desirable spot in the house, I’ve baked possibly the best banana bread I’ve ever made and spent several hours on a paid sock job.

Tomorrow we’re going to look at Really Old Buildings nearby, I expect there’ll be more beer, and almost certainly more baking since I haven’t made chocolate muffins in forever.

For now though, socks – a night where I get to bed before 3am (honestly, we natter like she’ll disappear if we sleep) and chocolate are the order of the day. I’m hoping we get to visit Standen and my Mum after the weekend. 🙂

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Disabled toilet redux

Dug this out from an old journal as a casual mention of the now three year old incident on twitter raised some interest and I couldn’t remember how I’d answered the rather personal question at the time. Reproduced for background then, the sphincter incident.

Scene: Corridor outside disabled toilet in a theatre hosting beer and folk festival.

Blaadyblah tries door handle, it is locked. 
Blaadyblah repositions wheelchair and waits.
People pass by.
Total stranger walks up and asks “you waiting for the toilet?”.
Blaadyblah smiles “Yes”
Stranger leans on wheelchair and asks if there’s another toilet.
Blaadyblah gestures “one over there, and one upstairs, I think”
Stranger “Oh no, I need the disabled toilet”
Blaadyblah “would you mind not leaning on my chair, please?”
Stranger “Oh.. oh, right. OK.”
Blaadyblah repositions to hold the door as it opens to reveal a harrassed new mum & freshly changed infant.
Blaadyblah smiles at baby and Mum who says thank you and departs.
Stranger “so, how do you… you know, go?” gesturing at the toilet…
.

.
Blaadyblah (stunned) “Er… I let go my urinary sphincter and empty my bladder… wha? Erm, how do you?”
Stranger looks confused and departs. 

Apparently I’m not alone in thinking that was just way too weird…

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

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For EDS awareness month in 2013 then, I’ve 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!

Now, if you’ll excuse me, I need to go take medications and work out how on earth to repair my wheelchair… If you’ve any further questions ask away. I don’t bite, my teeth aren’t up to the job. 😉

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The Mystery Airport

I have been slowly working through old files this last year and yesterday came across a story I’d written with some classmates when I was ten years old. Our teacher that year hated me with a passion, and treated me horribly but had this particular four chapter work bound four times over with thick tape and cardboard. The whole of each volume was covered in a marbled paper I vaguely recall crafting with oil and detergent in dyed water. I have a half memory that something unfair had happened with the content, but not of what.

Looking over the book yesterday I saw that mine was the third chapter, each had been printed and pasted onto the scrap book base. On the first page, in the table of authors my name appears against the final chapter (in which Liam awakens to find it was all a dream). In blue ink hand drawn arrows indicate that the index is erroneous and the authors’ names have been transposed.

On the pages, my real pages, which narrate the tale of making rain so as to distract the gods (who must provide sufficient thunder and thus fail to notice an escape from their realm) are asterisks in the familiar blue ink. They are not in my teacher’s hand, but in mine. I had in my memory credited her with making the alteration herself to each volume when it became apparent, however it would seem I marked the pages so my parents would see which was my work when I took it home at the end of the term.

She’s on the list, that woman. I still have nightmares about her.

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Well, Hello there.

You probably got here by accident, it is easily done. I’ve done it myself. There’s a loose tread on the staircase. One minute you’re stepping through a puzzle in your mind and before you know what happened you find yourself wrong end up in a dark corner full of cobwebs half buried under a toppled stack of discarded books.

No harm will come of it, just turn round and leave the shadows quietly, no-one will ever know you were here. When you sleep, you will forget yourself and all will be as once it was.

Arnica is good for the bruises, but you won’t remember that any more than you’ll know where they came from.

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