Noise Canceling Headphones

I am a wife of 32 years, a mother of four young adult children, and adjusting to life with chronic illness. I was diagnosed with Celiac 22 years ago, fibromyalgia 17 years ago, and CFS 8 years ago. Life with chronic illness has challenges. I am working on learning more about my illnesses and passing this knowledge onto others, along with sharing my life with it successes, trials, and debacles.

[bittersuggestion]

Emotionally it feels like I’ve been thrown out of a moving car

[lovehigher]

me? suffering? all the time

[kiiingocho-deactivated20150531]

Don’t compare your progress to others.

Don’t compare your progress to others.

Don’t compare your progress to others.

Don’t compare your progress to others.

Don’t compare your progress to others.

Don’t compare your progress to others.

[lds-with-cfs]

Things Fibromyalgia Sufferers Need to Stop Doing in order to feel better mentally and physically.

I have been doing poorly the last few weeks,(not every day,but most), the stuck in bed and crawl the toilet poorly. Finally today I was able to lift my laptop and look around for a little while. i saw this and it was a good reminder for me.

[neuroatypically-speaking]

I hate living in a world that is more worried about people becoming addicted to pain killers than about people being in actual pain.

[myalgicencephalomyelitiscfstom]

September 28 to October 4, 2015 is Invisible illness week ‪#‎iiwk15‬

[illness-to-wellness]

The Health Care Industry Finally Recognizes Fibromyalgia

On October 1, 2015, fibromyalgia will finally be recognized as an official diagnosis in the new ICD-10 list of codes being adopted across the U.S. This is the final culmination of the advances over...

Bless ICD-10 for finally having a code specific to fibromyalgia. Here’s to garnering a bit more respect as of October 1st, 2015!

[spooniestrong]

[illness-to-wellness]

Do you or any of your follower happen to have a link to that post about self care when you can't get out of bed? I reblogged it a while back but im having trouble finding it. I kinda need it right now and it would be really helpful.

Hello dear! I’m sorry that it’s taken me so long to answer your question. I did a bit of searching and hopefully found the ones you were looking for (and, if not, some helpful alternatives!) 

Self-cleansing for low spoon days by Mother of Unseen Champions

Self-care when you don’t have the spoons for showering by SCaR

General self-care tips for spoonies by Chronic Illness Support

(Also, for those who don’t already know the lingo, a spoonie is someone who deals with a chronic illness, whether mental or physical, that lowers their overall energy, which is measured in the Spoon Theory in energy units called spoons!)

Lots of love.

[positivedoodles]

[lds-with-cfs]

     For the last three weeks I have been having quite a bad flare/crash.  You know, when it feels like I have the worst flu I could ever have, without the vomiting, but with extreme weakness and pain.

     Anyways, even though I have had a whole bunch of illnesses including CFS/ME/SEID. for over seven years, I still think if I don’t feel like death at the moment, I can do more things, such as getting out of bed and making dinner, or going to church if I use precautions; such as, (wearing my noise canceling headphones, my sunglasses, and using the electric wheelchair or being pushed around in a regular wheelchair) without any consequences.  I pretend I am better than I am even if I feel just a little better that moment. And when i go through this performance, friends, and some family believe I am all well and have found the magic pill of wellness, unless I wear a poster that says: “I am faking this and will become very ill if you ask me to help do pretty much anything, including talking for more than a few minutes.”  But I do not want to be as sick as I am, or disappoint anyone, therefore I do not tell most people how I am actually doing, unless they ask for the truth, and very few people ask. if they really want to know, the correct answer usually is not what they want to hear because it means I am still sick, and I will tell them about this horrible illness as long as my strength will hold up. but most folks want to live in a world of puppies, roses and noisy, happy laughter, something that this sick person can’t be a part of.”

    Too often I pretend. Most days I use too many spoons.  Like writing this is 4 out of 10 spoons for me. Watching a TV show is 1-2. Talking to family is another spoon each 15 minutes to a half hour. I need to stop pretending.  I am never going to get well, but I should not pretend so I can feel less terrible more often.

[lds-with-cfs]

Temperature sensitivity and Fibromyalgia - Counting My Spoons

Research study examines temperature sensitivity and Fibromyalgia.

This study discusses how those of us with fibro and I believe other chronic diseases have extra pain brought about by temperatures, As I have progressed in my illnesses i have found that there is only a small spectrum of temps I can handle without pain, brain fog, anxiety and worsening of the fluish feeling- 62 to 66 degrees. When I had my first big crash I was always cold, even at 82 degrees I was bundles up. Now if I am out of these temps I am sweating up a storm or freezing. 

[illness-to-wellness]

Spoonie problem #187: overheating in the summer and feeling like death has come upon you.

[spooniestrong]

[lds-with-cfs]

When the summer heat comes my symptoms get worse; and when the pain and fluish feeling ramps up so does my migraines, anxiety, and my other symptoms.  So hopefully this cat can poof all those away too.

[littlemissstarshine1]

A great post that breaks down some of the lesser-known qualities of EDS.

[spooniestrong]

[fibrogal33-blog]

[myalgicencephalomyelitiscfstom]

Hating the Phone with Fibromyalgia and Chronic Fatigue Syndrome

See why fibromyalgia and chronic fatigue syndrome can make telephone conversations hard, plus how to get around the problems.

Extract: --- "Social interaction takes energy I did not understand did when i was healthy, but now I know it all too well on low-energy days, I really try to avoid the phone..." ---