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Saturday, 31 December 2011

As mentioned previously, I subscribe to the HMSA magazine/newsletter because it is relevant to my condition. Likewise there are publications out there that are specifically designed for those with particular conditions. I have recently come across a few generic disability magazines available to all and thought I would share them with you...

1. Disability Now - www.disabilitynow.org.uk
A UK based publication that is generic and applicable to all those that suffer with disabilities.

2. Able Magazine - http://ablemagazine.co.uk/
Again, another UK based generic disability magazine.

3. Ability Magazine - http://abilitymagazine.com/
A USA based disability magazine available for the public through subscription.

Do you know of any more publications... invisible disability publications? Let us know, drop us a line!
We have come across this website created to inspire and encourage Disabled Entrepreneurs. The site features Inspiring Storiesthe latest news as well as much much more...

Check out the website: www.disabledentrepreneurs.co.uk

Also, from having a read of some of the Inspiring Stories myself I have come across some more links that may be of some use to you. I have shortlisted the links below.

Do you need equipment but are weary of the expensive costs? Check out the second hand disabledgear available to you! www.disabledgear.com

Check out the virtual library of everything disability! Owned and ran by people with disabilities! www.ableize.com

If you know of any links to useful websites that you would like featured contact us at hideandseekid@hotmail.co.uk 

Wednesday, 28 December 2011

A few links that would appreciate your donations, every penny counts! Thank you.

Check out Mandy's inspiring story...

Well done Mandy!
If you want the latest links and snippets of useful info then follow us on twitter at @hideandseekid

For instant access to other charities and helpful people!

Thursday, 22 December 2011

Stumbled across a Crippen 'Probably the greatest disabled cartoonist in the world'! Check out his work at http://www.crippencartoons.co.uk/index.shtml

Last Day! If you haven’t already please click the link and press ‘back this idea’ to help me raise money for some very worthy EDS charities and to raise awareness about invisible disabilities, thanks and thank you to everyone that has already voted!

The competition ends today so please get clicking!

Wednesday, 21 December 2011

To go to the link Please click here

The link suggests what the 9 greatest inventions are for those who are physically impaired so if you would like to know more about the following click on the above link!

1. Braille
2. Walker
3. Flex-Foot feet
4. Cochlear implant
5. Rewalk Exsoskeleton
6. Mechanical Layrnx
7. Text Telephones
8. Car Hand Controls
9. Colour identifier

Monday, 19 December 2011


A message to ensure we keep in our hearts all those that have sadly lost their battle to EDS and other invisible disabilities.


May we especially remember...

Alexa Simmons

Susan Wade

Amanda Corbett

Eric Bachmann

Amy Mak

Kimberlee Jett

Grace Helen Reid

Crystal Reid

David Bowen

George Miller

Kara Engell

Doug Phillips


Barry Newberry

Irene Newberry

Brian Newberry

Susan Moulding

Herbert Archibold Stock

"As long as we live, they too shall live,
for they are a part of us, as we remember them."

--You ache from head to toe and you're too exhausted to move...but you still look great!
-- You can hobble like an old woman from the disabled parking bay to the store and people still give you dirty looks.
... -- The question, "Where are my keys?" has been answered with, "In the sink, where you left them."
-- You explain EDS to someone...and they don't believe you and tell you that's too weird to be a real illness.
-- You can absent-mindedly put the cereal box in the fridge...after also absent-mindedly re-arranging a shelf in there so that it will fit.
-- You take more medications than your grandparents...combined.
-- You're incapable of sneaking up on anybody, because people can hear your joints cracking from a mile away.
-- You can relate to The Princess and the Pea.
-- You can also relate to Humpty Dumpty.
-- You get invited to your local pharmacist's Christmas party.
-- You've had doctors refuse to treat you because, simply put, they haven't a clue how.
-- You buy Voltaren, bandages, Tubi-grip, medical tape and Skin-Prep in bulk.
-- You have an entire cupboard just for your splints/braces.
-- You're on a first name basis with the Emergency Department staff at the local hospital.
-- You're the only one in your house who's still awake at 3am, but you're also the only one still asleep at midday.
-- You can sleep from 3am until midday and still feel tired.
-- You start giving your most rebellious joints nicknames.
-- You not only use the Spoon Theory yourself, but your friends and family do, too.
-- You have no room left in your mobile phone for new numbers, because the contacts list is full of doctors.
-- You frequently have to hit "savings" on Eftpos machines instead of "credit", because you can't actually write your signature that day.
-- You have your "bad day clothes" and "good day clothes" at different ends of your wardrobe.
-- You've given up writing to-do lists, because you're too brain-foggy to remember to check them, anyway.
-- It takes you until mid-afternoon just to get ready to leave the house...and then you need to lie down.
-- Every time you're in the Emergency Department, all the student doctors and nurses get called over to study you.
-- You get up, walk into the kitchen, forget why you're there, go back to sit down, remember, walk back into the kitchen, forget why you're there...
-- You've been accused of stealing a mobility scooter while using it to get around a shopping mall.
-- You can tell your friends and family that you've just dislocated something and have to stop and set it...and they act like it's normal.
-- If your friends ask you to meet up next Tuesday, you have to say you'll call them on Tuesday morning to confirm, because you won't know until then whether or not you can go.
-- The 1-to-10 pain scale doesn't apply to you.
-- People ask if you're studying medicine, because you seem to know so much "random medical stuff".
-- You have a scripted, tried and tested response to the line: "But you don't look sick." You can also rattle it off without really even thinking.
-- All you want for Christmas is new collagen.
-- You start your Christmas shopping in October, because shopping during the Christmas period in those crazy crowds is a matter of life and death.
-- You remember holidays like Christmas and Easter by which injuries you had at the time, eg., "Oh yeah, that was the Easter Sunday I was in a sling for the dodgy shoulder and a wheelchair for the dislocated hip..."
-- You need both hands and all your strength to move an empty frying pan and your fear isn't of dropping it, it's of the frying pan taking you down with it.
-- You take a bag everywhere and it's full of pills, bandages, snacks and two bottles of Gatorade.
-- You can relate better to the people at the local retirement village than you can to your friends.
-- If asked for your medical history, you just pull a wad of paper out of your bag with it all typed up for them to photocopy, because listing it all would take hours and you're terrified of forgetting something important, because you're so brain-foggy.
-- It takes you four hours to do something that anyone else can do in one hour and you still can't figure out where those extra three hours went.
-- You factor "bad days" into your plan for the week...then go back and add an extra one in, just in case.
-- When you go on holidays, you take an extra bag just for your medical stuff.
-- You get told off so regularly for putting too much salt on your food that you just can't be bothered explaining low blood pressure to people, anymore.
-- It's easiest to just go to a Hallowe'en party dressed as a mummy, because you're already half-covered in bandages, anyway.
-- You can walk into a restaurant or cafe and be either allergic or intolerant to everything on the menu.
-- You accidentally call your doctor instead of the person you're supposed to be calling, and the reason you give is that you're "on autopilot".
-- You can get your leg all the way up behind your head...but putting it back is another matter.
-- Your dog/cat is overweight because you keep forgetting you've fed him/her and feeding him/her again.
-- You can scratch anywhere on your own back, bite your own elbow and lick the BRIDGE of your nose on Monday, but on Tuesday you can't even tie your own shoelaces.
-- To list your current aches and pains would spend your entire quota of spoons for the day.
-- While people-watching, you realize that you spend more time watching how their joints move than anything else.
-- Your spouse has learned to put your joints and prolapsed colon back in while the nurses run out of the room calling a surgeon.
-- Stairs are more evil than people who talk in the theatre.
-- People constantly comment on how soft your skin is and how lucky you are to have it. You don't even bother explaining how much you'd like to get rid of it if you had the chance.
-- Your family can't understand why you were such a 'normal' child and now you can't walk, or that the party tricks you did as a child cause crippling pain now.
-- You laugh and cry at once at non-Zebras who complain of a sprained ankle once a year, or the months of rehab that come with a single dislocation.
-- You can't remember the last time you went to bed before you were already so tired you were passing out, and it's not because of your party-hard lifestyle. You just can't get any sleep unless you're that desperate.
-- You're torn between using your 'really really good' painkillers at night (when you dislocate constantly as a restless sleeper) or during the day (when you dislocate constantly trying to get around).
-- Every conversation with a doctor about your current medications starts with, 'I hate to feel like I'm drug-seeking...'
-- You're sick to death of hearing, "But you're so young!" whenever you explain EDS to someone. Clearly, the concept of genetic conditions starting at conception is beyond some people.
-- You know exactly which stores in the city are level access, which has tiny little stairs just high enough that you need to avoid them, exactly what's on the top few shelves at the supermarket and where all the disabled toilets are anywhere you go.
-- You've had to defend yourself for using a disabled toilet when not in a wheelchair...because clearly, all disabled people use wheelchairs. You've also had to defend yourself for getting out of your wheelchair and taking a few steps/standing up...because wheelchairs are only for paraplegics, apparently.
-- You've had to argue with your state's disability organisation over what 'variable' means in your condition. To them it means some days you won't need any help and you might eventually get better. To you, it means you have bad days and worse days.
-- People who do not know say, "Wow...are you a Yoga Instructor?" when they see you scratch your back or just move your limbs in general.
-- You wish you got paid in cash every time a doctor, nurse or EMT asked, "So, what hurts?" or, "EDS? What is that? Can you explain it to me?" We would all be millionaires!
-- You can brush your hair/teeth using your feet when your hands/arms/shoulders refuse to co-operate.
-- Soft cotton Pyjamas are your favourite clothes -- so much so that you've bought the same pair of PJ pants in 'daywear' colours such as black, grey and navy, so you can leave the house in them.
-- You now shop online for groceries, because the effort involved in getting in the car, driving, arriving at shop, getting out of c... See, even TYPING it is too much effort.
-- You can use your symptoms (aches, swelling, blood pressure problems) to predict the weather more accurately than the Bureau of Meteorology can with their fancy equipment.
-- Your electricity bill is insanely high, because you can no longer hang clothes out to dry and you need air conditioning all summer and a heater all winter.
-- You read this list and really want to add something funny that's just in the back of your brain...but you can't get to it through all the brain fog.
-- Your friend with a sprained ankle gets more sympathy than you do with your multiple dislocations.
-- When you pass out or get some new, frightening symptoms and, instead of going to the ER or calling an ambulance like a 'normal' person, you just write it down to mention to your specialist at your next appointment, whenever that may be.
-- As a child, your nickname was Rice Crispy, because you snap, crackle and pop.
-- Doctors are scared of you.
-- When two new interns at the childrens hospital ER both come out to grab charts from triage at the same time and then argue over who's not going to get your 3-year-old child's 3 folder thick chart.
-- You keep $50 safe in the house so that on the days when you can't move you can still order pizza to feed your kids.
-- You can relate to everything on this list and add a few of your own!

The Spoon Theory

by Christine Miserandino www.butyoudontlooksick.com

My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.

As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?

I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.
At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.
I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.

Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.

She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?

I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.

I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.

When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.

I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.”

Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.

After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”

Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my “spoons”.

Monday, 12 December 2011

Only 11 days for all you facebookers to press 'back this idea' to help raise money for two invisible disability charities!

Thanks to everyone who has backed my bid so far, if you haven't yet please do, anyone on facebook can vote and it just takes a few moments of your time!

Click the link below:


Sunday, 4 December 2011

We have set up a new facebook page.

Simply search HideandSeek Disabilities and like our facebook page!