copied from FB Arthritis Guy and thought you would like

BikerAngel

Adventures of RA Guy | November 5, 2011
10 Things I’ve Learned From Living With Chronic Illness


1. Getting all of the rest that I need does not make me lazy. Even when I’m not moving, my body is expending a huge amount of energy on powering its overactive immune system, and on defending itself from the subsequent pain and inflammation. So while many times it might look like I’m not doing much, I’m still probably doing more than most others.

2. No matter how much it hurts, I still have to find a way to move. (Of course, I’m not advocating for movement that results in injury/harm.) During one of my first major bouts, I thought that the best thing to do was to move as little as possible. This really didn’t lower the pain, but it did eventually result in atrophied muscles, months of daily physical therapy, and having to learn how to walk again.

3. If I’m going to be in pain, I might as well be doing something that I enjoy. I may not be able to do certain things like I once used to be able to, but chances are I can still do more than what I thought possible. Learning this lesson, firsthand, is priceless for my mind, body, and soul.

4. And for those moments when it’s just not possible to do something, cancelling at the last minute is perfectly acceptable. I’ll be honest, and I’ll tell you the exact reasons why I’m not able to participate. Please don’t take it personally…I’m just as disappointed, if not more, than you are.

5. If you are a doctor or healthcare professional, you must earn my respect. I, the patient, will work just as hard to earn your respect. I will ask lots of questions, and I will listen to what you have to say. When it comes to treatment options, though, I will be the final decision maker. (After all, no one knows my body better than I do.)

6. Achieving acceptance is hard. (I used to think that doing so meant “giving up.”) Just when it feels like I’ve accepted everything there is about my illness, something pops up, and I want to deny everything, all over again. With chronic illness, I don’t think there is such a thing as “complete” acceptance…there’s just a continuous journey, back and forth, between denial, acceptance, and so many other emotions.

7. No matter how bad I’m feeling, no matter how much pain I’m in, it’s *not* okay to take out my anger and frustrations on other people, especially those who are close to me. Yes, it’s fine–sometimes even healthy–to feel angry and frustrated…but I have to know how to release this energy in a way that doesn’t harm myself, or those around me.

8. Never, ever, compare my pain and illness to those of others. My illness is mine, and mine alone. I’m completely entitled to feel everything–emotions, symptoms, and otherwise–that results from living with my illness. (I’m entitled to feel everything, that is, except shame.)

9. While a positive attitude isn’t going to “cure” me of my illness, it’s certainly going to make it easier to overcome the challenges that I encounter on a daily basis. Yes, I do have occasional periods of doom and gloom…but I make a point to pass through them as quickly as possible. The mind is a powerful tool, and I must use it to my advantage.

10. Just when it feels like my world is going to fall apart, the best thing for me to do is to sit down, and take a deep breath. And another one. And another one..until I realize that everything is indeed okay.

julie47

Biker angel thank you for posting this.

so true.

Juliepf x

salamander

Thanks for putting this up, brilliant!Everyone should read this, as should their families and friends!

However, it might get removed because of quoting large piece of text, better to put a link to the site.

dreamdaisy

What a powerful piece of writing: I would like that to become a permanent 'sticky' on this forum, I really would. I have never FBed in my life but I would like to see what else this guy has to say. Thank you Biker, that was truly a tremendous read. DD

woodbon

Hi,
This really is a fantastic post. It's so much better to be honest, I hope the disappointment will soon ease. Love Sue

tillytop

Thank you so much for posting this. I am sitting here crying while reading and have printed it out to keep for future reference - particularly the last paragraph about what he/she does when feeling the world is falling apart.

Thanks again.

Tilly

Rallymad

That is a very poignant piece, it has managed to convey all that I feel, I have let my partner read this, his initial thought was is this something to explain my 'excuses' but the more he read, I think he got it.......
Thank you for posting this
Arlene x

stickywicket

I like this very much. Thank you, BikerAngel.

No need to go to Facebook for this. I googled 'Arthritis Guy' and found his blog, which I found interesting and refreshingly upbeat. I'm not sure copyright laws apply to a blog. I've always assumed that, once something's on the net, you have little control over it but, if anyone's copying this, it's only courtesy to reveal an author's name or pen name when quoting them.

salamander

stickywicket wrote:

I like this very much. Thank you, BikerAngel.

No need to go to Facebook for this. I googled 'Arthritis Guy' and found his blog, which I found interesting and refreshingly upbeat. I'm not sure copyright laws apply to a blog. I've always assumed that, once something's on the net, you have little control over it but, if anyone's copying this, it's only courtesy to reveal an author's name or pen name when quoting them.

He has copyrighted his blog, you will see at the bottom of the page.

stickywicket

You're quite right, Salamander. I see it's already been reported to the Mods. I think your suggestion of referring to his blog is a good one.

BikerAngel

sorry folks I don't know how to link on here and he does allow share on FB from his pieces posted and does encourage us to share things thats why I just cut and pasted and put where it was from so you all knew it was not mine. The mods have pm me so feel free to delete this thread and sorry for upsetting anyone but getting it wrong..........think I will just go now but thanks for your help you have given me up till now

salamander

I just googled his name delboy, didn't go anywhere near facebook.

Biker angel, it's not a criticism of you so don't go anywhere, I was just saying that you could be infringing his copyright, which I am sure you wouldn't want to do. I think it was a very interesting post and useful to me personally.

stickywicket

I'm in full agreement with Salamander, BikerAngel. Please don't feel you've offended anyone or upset anyone. You are a valued member of the forum.

suzygirl

Thanks so much for posting this Bikerangel, I am glad I got to see it. It is an amzing post and I would like to see it stickied.

P.s. Don't go anywhere, we need you!!

CJHunter

Tracey, thank you. I will be copying it and showing others. If this person didnt want others to see he wouldnt have posted it on F.B in the first place.

Cheers Tracey.
Xx

valval

do not worry and do not go any where we all make mistakes and am sure if he allows them to be shared on fb he will not worry about it being here we are all in the same boat val

dreamdaisy

For what it's worth BikerAngel I don't think you have done anything wrong at all, far from it. They were - are - truly inspiring words and I for one feel very grateful that you gave me the opportunity to read them. Thank you - and don't go. Please don't. DD

elnafinn

Hi Tracey

There is absolutely no reason to go. What good would that do anyone? Your thread has been read by many members on the forum and replies have all said how pleased they were to be able to read it and how helpful and useful it has been for them. It is probably best in future to put a link or mention about googling it rather than copying and pasting large amount of type. You were not aware of that. You have not done anything terribly wrong. It has been appreciated by members of the forum that you drew their attention to it.

Thank you.

Elna x

[Deleted User]

Hi,

The house rule relating to copyright is below

5: Please be careful when you copy and paste text, that does not belong to you, into your posts. Quoting a few lines with an attribution is acceptable and know as 'fair use'. If you copy large pieces of text without permission, you (and Arthritis Care) may be liable to legal action from the content owner. We recommend you create a link to any major content to which you wish to refer.

Del has given the link to the website by rheumatoid arthritis guy and it is here too http://www.rheumatoidarthritisguy.com/

On this occasion it is not necessary to delete the original post

Moderator
YEH

CJHunter

Its fantastis and should NOT be removed.
If anyone wants to see where this has come from go to facebook and look up RA Guy. His webpage is good too. www.rheumatoidarthritisguy.com

Thanks again Tracey.xx

dreamdaisy

I've just re-read it as I am shortly about to do the humira. What astonishing words. I know they have given me a new insight and further strength: thank you, RAguy, whoever and wherever you are. Thank you. DD

RAGuy

I'm happy to find out that so many people have been helped by reading my most recent blog post, "10 Things I've Learned From Living With Chronic Illness." Thank you for all of your kind comments.

I've also created a 60-Second Guide to RA, which many people have found to be quite helpful when explaining rheumatoid arthritis to friends, family members, and coworkers. If you're not already familiar with this guide, please feel free to take a look!

If anyone wants to follow me, now or in the future, I can be found at:
Blog: www.rheumatoidarthritisguy.com
Facebook: www.facebook.com/RheumatoidArthritisGuyFanPage

Sincerely,
Rheumatoid Arthritis Guy

stickywicket

Thank you RAGuy. I don't do Facebook but I shall pop into your blog sometimes.

BikerAngel

RAGuy wrote:

I'm happy to find out that so many people have been helped by reading my most recent blog post, "10 Things I've Learned From Living With Chronic Illness." Thank you for all of your kind comments.

I've also created a 60-Second Guide to RA, which many people have found to be quite helpful when explaining rheumatoid arthritis to friends, family members, and coworkers. If you're not already familiar with this guide, please feel free to take a look!

If anyone wants to follow me, now or in the future, I can be found at:
Blog: www.rheumatoidarthritisguy.com
Facebook: www.facebook.com/RheumatoidArthritisGuyFanPage

Sincerely,
Rheumatoid Arthritis Guy

Thanks RA Guy for coming on here I was not sure how to link to you but hubby has shown me and for future I now know how to but I'm sure everyone will find you now and I hope you come and post more for us on here :-)

BikerAngel

sorry guys for my reply post last night I had an extremely crap day and had fallen out with hubby and was at an all time low and very upset and I think coming home and reading things I took it the wrong way and to heart (silly me) I just wanted to let you know you aint getting rid of me and thanks for your replies. Doc on Thurs so gonna chat to her and let her know how low I am and see if she can help me as I can't go on like this and I don't know how to get off the downward spiral I am on

traluvie

What a great post..

Thanks

RA Guys page is very good and would recommend ..