Author Topic: 10 Things I’ve Learned From Living With Chronic Illness  (Read 2948 times)

Carolina

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10 Things I’ve Learned From Living With Chronic Illness
« on: July 29, 2013, 05:27:48 AM »
Dear Angels,

I found this on another forum:

Hugs Elaine

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.

- See more at: http://www.rheumatoidarthritisguy.com/2011/11/10-things-ive-learned-from-li ving-with-chronic-illness/#sthash.rzJ6tni2.dpuf

Female-Elaine,79-CVID-pSJS-WMD (Eylea) C-PN-CAD-Osteoarth-SFN-Knee/Shoulder Degeneration-SIBO-Act.Purpura-Tinitus-Meniere's-Hiatal Hernia-Achalasia-Hand Surgeries, UTI's-Braces/Walker-IVIG Gamx-Medrol-Gabapentin-Atenolol-Pilocarpine-LDN-Nasonex-Lipitor-Estrogel-D-Mannose-NAC-Om. 3-Naltrexone-Esomep.

Velcro

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Re: 10 Things I’ve Learned From Living With Chronic Illness
« Reply #1 on: July 29, 2013, 08:11:03 AM »
Love this!  Especially #8

finallyadx

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Re: 10 Things I’ve Learned From Living With Chronic Illness
« Reply #2 on: July 29, 2013, 08:18:06 AM »
Very nice - thanks for sharing.  I may print it off and show it to some of my family and friends.

Have a great day!
Primary ss dx 2013, plaquenil, vitamin d, iron supplements, vitamin b12, d-mannose for chronic UTI's, magnesium for heart palpatations and Zinc

jpd54

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Re: 10 Things I’ve Learned From Living With Chronic Illness
« Reply #3 on: July 29, 2013, 10:50:06 AM »
  That says it so well!   I agree with finallyadx.  This needs to be shared.

  Thank you for posting this!!!

          jpd
SJS, Fibro, Osteoarthritis, Osteoporosis, GERD, Rosacea, TMJ

Celebrex, Gabapentin, Lasix, Potassium,Hydroxychloroquine, Lexapro, Lisinopril / Hydrochlorothiazide, Linzess, Metoclopram, Nexium, Oracea, Savella, Simvastatin, Vitamin D, Voltaren

slccom

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Re: 10 Things I’ve Learned From Living With Chronic Illness
« Reply #4 on: July 29, 2013, 04:40:16 PM »
Number 8 is pretty much what I took away from the book, "When Bad Things Happen to Good People." That is a book well worth reading!

Sharon

susanep

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Re: 10 Things I’ve Learned From Living With Chronic Illness
« Reply #5 on: July 30, 2013, 12:41:57 AM »
I know we are not adding to this, but I have learned through all this that I can adjust to a simple life with lots of rest and still be happy.

I have learned that chronic illness is humbling, and that can be a good thing.

I have learned that laughing a lot, finding the good in all things and people is just nice, and helps with any stress.

I have learned it's ok to sometimes need to vent, and then go on.

susanep
Sjogren's, Lupus, Rheumatoid Arthritis, Hypothyroid, Fibro, Sleep Apnea, Diabetes 2, Asthma, and Gerd.  (Meds I take) Omeprazole, Pilocarpine, Levothyroxine, Effexor, Cpap, Aspirin, Mobic, Prilosec,, Xanax, Restasis, Systane,Vitamin D3, Plaquenil, Gabapentin, Provigil , Advair, Nasonex, and Proventi

powderpuff

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Re: 10 Things I’ve Learned From Living With Chronic Illness
« Reply #6 on: August 04, 2013, 12:49:34 AM »
I love this!

Thanks for sharing!

Carolina

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Re: 10 Things I’ve Learned From Living With Chronic Illness
« Reply #7 on: August 04, 2013, 04:03:40 PM »
Oh dear susanep

We ALL add to it!   !0 is just a round number, but the lessons learned are innumerable I think.

Simplicity, humility, laughter, seeking the positive, seeing your negatives, looking at them, letting them go and moving on.

Lovely thoughts, wonderful lessons.

Hugs and thanks!

Elaine
Female-Elaine,79-CVID-pSJS-WMD (Eylea) C-PN-CAD-Osteoarth-SFN-Knee/Shoulder Degeneration-SIBO-Act.Purpura-Tinitus-Meniere's-Hiatal Hernia-Achalasia-Hand Surgeries, UTI's-Braces/Walker-IVIG Gamx-Medrol-Gabapentin-Atenolol-Pilocarpine-LDN-Nasonex-Lipitor-Estrogel-D-Mannose-NAC-Om. 3-Naltrexone-Esomep.

SjoAmy

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Re: 10 Things I’ve Learned From Living With Chronic Illness
« Reply #8 on: August 04, 2013, 04:51:41 PM »
I LOVE #8 too!   

Ya know, don't compare my outsides with your insides.

And don't compare my insides with your outsides.


Sometimes people aren't aware of what my insides really are.

ellenkerr

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Re: 10 Things I’ve Learned From Living With Chronic Illness
« Reply #9 on: August 04, 2013, 09:54:26 PM »
I love this, it's so true.  Thanks for posting it.