Metoo Posted February 7, 2014 Share Posted February 7, 2014 (edited) For anyone who suffers from chronic ill health or indeed any long term painful condition, I thought I Would post this as a helpful insight for friends/carers/relatives to bring some understanding of how it feels to cope every day with a debilitating illness. It was written by a young girl who suffers from Lupus http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf Edited February 7, 2014 by Metoo Quote Link to comment Share on other sites More sharing options...
tonyman Posted February 7, 2014 Share Posted February 7, 2014 thanx Metoo.........have just forwarded it to mrs tonyman too .........I believe Selena Gomez has Lupus................ Quote Link to comment Share on other sites More sharing options...
Metoo Posted February 7, 2014 Author Share Posted February 7, 2014 thanx Metoo.........have just forwarded it to mrs tonyman too .........I believe Selena Gomez has Lupus................ You're welcome Tonyman, Anybody who lives with pain can understand perfectly where this girl is coming from. There in another theory called 'Gorilla in my House' which describes the day to day battle with disability, see below http://batsgirl.blogspot.co.uk/2008/04/gorilla-in-your-house.html Quote Link to comment Share on other sites More sharing options...
tonyman Posted February 7, 2014 Share Posted February 7, 2014 how are you involved with this Metoo , my daughter is type 1 diabetic so this is relevant to us .......... Quote Link to comment Share on other sites More sharing options...
Metoo Posted February 7, 2014 Author Share Posted February 7, 2014 (edited) how are you involved with this Metoo , my daughter is type 1 diabetic so this is relevant to us .......... I struggled with Rheumatoid Arthritis and found these links when looking for answers on how to cope with day to day living and still being able to enjoy my life. The trouble with chronic illness is that usually you don't look ill, and so people assume that you can keep up with the best of them but in reality you sometimes find it hard and frustrating when you know you are trying your best but still you are way behind everyone else. Even family members, those closest to you don't fully understand how hard it is sometimes and the spoon theory is brilliant for getting that message across. I hope your daughter can take some comfort in these articles, it is great to know you are not alone in your struggle with health issues. Metoo x edited to add........Not that you would wish this on anyone else Edited February 7, 2014 by Metoo Quote Link to comment Share on other sites More sharing options...
newjez Posted February 7, 2014 Share Posted February 7, 2014 Yep, that is pretty much my life these days. I've been spoilt the last four months as I've had more spoons than I know what to do with, but the last five weeks the spoon supply has hit extreme shortages. Some days I don't even have the energy to have tea. I just come home and sleep. I've been skipping lunch, as the effort to digest my food means I'm too sleepy to drive home from work. Quote Link to comment Share on other sites More sharing options...
Guest Posted February 7, 2014 Share Posted February 7, 2014 I am familiar with spoon theory - I have a number of chronic illnesses, Ehlers-Danlos Syndrome, Rheumatoid Arthritis and Fibromyalgia and to be honest I don't find it that useful. I went to a psychologist who specialised in pain management using mindfulness and one of the most useful things I took from it is other people are not going to understand, get over it! Okay it wasn't put like that but once I stopped expecting them to it actually got easier. I find the Buddhist teaching of 'Two Arrows' more helpful. I can't find a link that I actually like entirely but this one will do..http://wisdomthroughmindfulness.blogspot.co.uk/2012/01/story-of-two-arrows-physical-pain-is.html In my own simple words - if you are in physical pain it hurts but if you then add to that feels of 'it's not fair', 'my friends don't understand', 'I feel bad letting people down' - that mental pain is being caused by yourself and you can avoid it - VERY, VERY difficult and probably takes a lifetime of practice but you can and even starting to helps - I know because I try! This is a brilliant book - 'How to be Sick' http://www.amazon.co.uk/How-Sick-Buddhist-Inspired-Chronically-Caregivers/dp/0861716264 And there is a Facebook page too https://www.facebook.com/how.to.be.book.author If spoons works for you though brilliant - it does remind me to pace myself sometimes Quote Link to comment Share on other sites More sharing options...
newjez Posted February 7, 2014 Share Posted February 7, 2014 Thankfully I'm not in pain. But I only have a certain amount of stamina before my body tells me it's sit down time, or sleep time. I never thought of it as spoon theory, but essentially that's how I plan my day. Quote Link to comment Share on other sites More sharing options...
Metoo Posted February 7, 2014 Author Share Posted February 7, 2014 Yep, that is pretty much my life these days. I've been spoilt the last four months as I've had more spoons than I know what to do with, but the last five weeks the spoon supply has hit extreme shortages. Some days I don't even have the energy to have tea. I just come home and sleep. I've been skipping lunch, as the effort to digest my food means I'm too sleepy to drive home from work. Sorry to hear that Newjez, I often wonder how you are these days, usually when I click on your thread 'what are you oing now' and I remember the bit about the chemo lounge. I hope you can increase your spoon supply real quick. Please take time to eat, especially your evening meal. You can't run on empty for long. My very best wishes to you Metoo x Quote Link to comment Share on other sites More sharing options...
gee13 Posted February 7, 2014 Share Posted February 7, 2014 Interesting metaphor for having choices during illness, been thinking a lot lately about labelling dis-ease, balance of health (or lack of) and the understated influence of the mind on body. The main question is whether being diagnosed or classified medically hinders improvement or not. This has a very strong effect on the mindset, and the minds way of coping with disease and overcoming it. The western model of medicine doesnt really look to far into this, just treats the symptoms and not the underlying causes. But thats for another thread... Thanks for sharing Quote Link to comment Share on other sites More sharing options...
GiveAGirlShoes Posted February 7, 2014 Share Posted February 7, 2014 I have type 1 diabetes and as much as my oh seems to understand I still find it difficult to get the point across sometimes. If I pass out because of low blood sugars I feel like he's disappointed in me, whereas in reality I've just burned out and probably made a very minor maths error along the way. I read this earlier and put it to one side in my brain, I've now decided I do like it I bet I won't think to use it until I have a disabling hypo at which point my translation of this story will be hilarious, something like a tasmanian devil in my kitchen lol Quote Link to comment Share on other sites More sharing options...
newjez Posted February 7, 2014 Share Posted February 7, 2014 Sorry to hear that Newjez, I often wonder how you are these days, usually when I click on your thread 'what are you oing now' and I remember the bit about the chemo lounge. I hope you can increase your spoon supply real quick. Please take time to eat, especially your evening meal. You can't run on empty for long. My very best wishes to you Metoo x Thanks metoo. I've been in remission three years now, eight years since diagnosis. I didn't bounce back from the second round of chemo. I get ill and run down pretty easily. I was on immunoglobulin, which gave me a boost. My wife thinks I came off it too early. But I have to prove I'm ill for an extended period before they give me more. I do miss the sunshine. I'm better in the summer. Thanks for the thread. Quote Link to comment Share on other sites More sharing options...
Maruska Posted February 7, 2014 Share Posted February 7, 2014 Thanks metoo. I've been in remission three years now, eight years since diagnosis. I didn't bounce back from the second round of chemo. I get ill and run down pretty easily. I was on immunoglobulin, which gave me a boost. My wife thinks I came off it too early. But I have to prove I'm ill for an extended period before they give me more. I do miss the sunshine. I'm better in the summer. Thanks for the thread. That`s great Newjez. It takes a long time to recover from chemotherapy but recovery can be complete, our hospital runs a survivor clinic for people who have been in remission at least a year, some of them come after 15 - 20 years, you would never guess they had cancer in the past. I work with oncology patients on a daily basis - almost exclusively, even though our ER sees other patients too - and there is a great difference in their approach. You would see someone who just had been diagnosed, obviously feeling scared to death, family trying to do their best by making the patient do as little as possible. They won`t let him/her walk from the car to the hospital, they buy a wheelchair and push him around everywhere. Patient quits job because he feels he`s too sick to work ( and goes on disability). This attitude isn`t helpful IME. Lots of our patients do their best to stay active, carry on with their lives, enjoy family and friends and they usually have the best outcomes in relation to the disease. It`s OK to take a nap when you`re tired or call in to work if you don`t feel well. You said you work which is great. I hope you feel much better/ less tired soon. I`ve read somewhere - not sure where - a nice thing that about sums it all up: " I have cancer, cancer doesn`t have me! " Quote Link to comment Share on other sites More sharing options...
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