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What NOT to say to people who are crhonically ill / disabled

Colleen1

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I came across this site today, and am really enjoying it. Thought people here might also find it useful too. Even the site name is great!
ButYouDontLookSick.com: A community for support, education, and inspiration.


In particular, I really enjoyed this video about time & energy management while dealing with chronic illness.
The Spoon Theory written by and spoken by Christine Miserandino - YouTube

It's great when we can find decent resources whether they make life easier or are simply validating.
 
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mamallama70

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I had a friend that was relatively patient with my chronic illnesses, but he never really got it until he read The Spoon Theory. In his mind, as long as he had access to coffee, he had an unlimited number of spoons. He finally understood that all of the Starbucks in the world wouldn't give me as many spoons as some people had. It's a great way of explaining things.
 
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desmalia

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I had a friend that was relatively patient with my chronic illnesses, but he never really got it until he read The Spoon Theory. In his mind, as long as he had access to coffee, he had an unlimited number of spoons. He finally understood that all of the Starbucks in the world wouldn't give me as many spoons as some people had. It's a great way of explaining things.
My husband really appreciated it too. He used to be annoyed with me and think I was just lazy. But once I was finally diagnosed he started to be a lot more understanding and helpful. The Spoon Theory helped even more with that. It's really just about evaluating what you have been blessed with and stewarding that the best you can. Some days that's enough energy to get through, some days not so much.



one advice, if for some reason the faith does not help enough, then the way of naturopathic medicine can be a perfect aid, and both are very powerful when combined

Blessings
It's really not a matter of faith helping enough or not. The Lord is ever faithful to His children, even when we are faithless. :)

But yes I think we probably all agree that the more natural route is often better than depending on the pharmaceutical system. Personally I have opted to skip the drugs and stick with nutrition and exercise for as long as I can. A friend told me I'm "brave" for skipping the drugs. I had to laugh. I'm too scared to take them! lol. And I know of too many people with my illness who have taken these drugs for years, decades even, in hopes that somewhere down the line they'll help prevent the eventual ugly progression of the disease. Recently a report came out showing that many of those drugs don't help with anything long term. So thousands, even millions of patients have been suffering from side effects of drugs that are basically useless. No thanks!

Naturopaths (if you can afford them! lol) can be a great help sometimes. The diet I follow is designed by a doctor and she recommends Functional Medicine, which deals with whole body health and actually healing the source problems, not just masking the symptoms. If I could afford it I would definitely look into that kind of medical support.
 
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Colleen1

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I had a friend that was relatively patient with my chronic illnesses, but he never really got it until he read The Spoon Theory. In his mind, as long as he had access to coffee, he had an unlimited number of spoons. He finally understood that all of the Starbucks in the world wouldn't give me as many spoons as some people had. It's a great way of explaining things.

Neat...;)
 
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Colleen1

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one advice, if for some reason the faith does not help enough, then the way of naturopathic medicine can be a perfect aid, and both are very powerful when combined

Blessings

I appreciate your concern but just a reminder that this thread is regarding the topic of 'what not to say to people who are chronically ill / disabled'. Here is the 1st post which explains the thread topic:

http://www.christianforums.com/t7586176/#post58334713

However, there is a thread titled, 'Coping With Illness'. Here is the link:

http://www.christianforums.com/t7535017-13/
 
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desmalia

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I would love it if people would finally realize after many years that no , I cannot go outside in the sun. So don't ask me to go to the beach again.....LOL :D

Ahhh that felt good. :thumbsup:

don't try and shake my hand, I don't want to have to explain it again for the thousandth time to someone again.......LOL :D


wow, this feels like free therapy. :D
Preach on, brother! :D
 
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toLiJC

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It's really not a matter of faith helping enough or not. The Lord is ever faithful to His children, even when we are faithless. :)

But yes I think we probably all agree that the more natural route is often better than depending on the pharmaceutical system. Personally I have opted to skip the drugs and stick with nutrition and exercise for as long as I can. A friend told me I'm "brave" for skipping the drugs. I had to laugh. I'm too scared to take them! lol. And I know of too many people with my illness who have taken these drugs for years, decades even, in hopes that somewhere down the line they'll help prevent the eventual ugly progression of the disease. Recently a report came out showing that many of those drugs don't help with anything long term. So thousands, even millions of patients have been suffering from side effects of drugs that are basically useless. No thanks!

Naturopaths (if you can afford them! lol) can be a great help sometimes. The diet I follow is designed by a doctor and she recommends Functional Medicine, which deals with whole body health and actually healing the source problems, not just masking the symptoms. If I could afford it I would definitely look into that kind of medical support.


yes, if there have been no God and Jesus, then all we the people now would be dead due to illness and all the world would be full of incurable diseases only, and with regard to the naturopathy, there are many inexpensive books written by the reputable naturopaths in which there is enough information about how a human can alone help itself with fasting and all other completely natural ways, and as you also said, after all the naturopathy has so far been more or less unknown or inaccessible to not only one human being

here are some books about which we mentioned above: http://bragg.com/books/books.html

Blessings
 
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toLiJC

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Colleen1

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One of the worst things is not just specific statements that others may say but gossip in general. This adds to a lot of the stress to being ill. Then I'm not only dealing with illness but dealing with false rumors as well. It's not fun at the best of times.
 
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Tnmusicman

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Hello all. I too deal with the problem of chronic pain. I have a condition called Ankylosing Spondilitus plus Fibromyalgia,Spinal Stenosis and a sleep disorder that hasent been diagnosed yet but when a man can only sleep for 2 hours maximum there is a problem. Of course, the flip side is sleeping for 8 hours would cause me to be in horriable pain ( from AS ) so it's a double edged sword. Oh yes, the most current addition to the list of medical issues is a very,VERY painful trio of sores on my tongue that thus far an ENT can't figure out what they are!! They aren't cancer,as the ENT removed a big chunk of my tongue and tested it. His next move?? Send me to a dentist to make something to keep me from grinding my teeth. How can grinding my teeth cause incredibly painful sores on my tongue?? Sores that feel like giant canker sores!! I don't mind telling you they........HURT!!!! Imagine everytime something is eaten a huge wave of pain washing over you---plus I bite these sores at least twice a day because the sore is so large!
I'm over being mad at God and came to a conclusion that Gods ways are not my ways. It's little comfort but I just keep looking forward to the day when I'll have a new body!!
 
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Colleen1

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Hello all. I too deal with the problem of chronic pain. I have a condition called Ankylosing Spondilitus plus Fibromyalgia,Spinal Stenosis and a sleep disorder that hasent been diagnosed yet but when a man can only sleep for 2 hours maximum there is a problem. Of course, the flip side is sleeping for 8 hours would cause me to be in horriable pain ( from AS ) so it's a double edged sword. Oh yes, the most current addition to the list of medical issues is a very,VERY painful trio of sores on my tongue that thus far an ENT can't figure out what they are!! They aren't cancer,as the ENT removed a big chunk of my tongue and tested it. His next move?? Send me to a dentist to make something to keep me from grinding my teeth. How can grinding my teeth cause incredibly painful sores on my tongue?? Sores that feel like giant canker sores!! I don't mind telling you they........HURT!!!! Imagine everytime something is eaten a huge wave of pain washing over you---plus I bite these sores at least twice a day because the sore is so large!
I'm over being mad at God and came to a conclusion that Gods ways are not my ways. It's little comfort but I just keep looking forward to the day when I'll have a new body!!

welcome_2445.gif


Welcome, I hope you enjoy your time here. :) I feel for you. It sounds like
you have a lot of struggles. Many things are easier said than done. It's
not easy to manage when illness is there 24 hours a day every day and
not a lot of people around you understand. With the Chronic Myofascial
Pain I have scar ridges in my mouth from constantly biting my cheeks etc.
and I bite my tongue, swollen neck glands etc. It's not a topic I've had
other people understand or admit to having a problem with so thanks for
sharing.

 
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