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Tuesday, March 13, 2012

How Do You Handle Chronic Illness Setbacks?

Boy, don't you wish that living with chronic illness was easier?

Even when you are doing everything "right," it seems like the littlest thing can upset your balance and suddenly everything can come crashing down around you. Then all the progress you've been making is gone in a flash and there you are, back at square one.

It's in those moments I feel the most sorry for myself. 

I've dealt with more setbacks than I care to count.  That's because I'm not one of those lucky people whose chronic illnesses, once diagnosed, can be corralled and tamed into a reasonable submission.  No, I am one of those people whose chronic illness symptoms have either stayed the same or gotten worse, depending on the time period, despite considerable time, energy and effort to achieve a different outcome. 

Right now I am experiencing a huge setback.  This is the outcome of my choice to undergo Hepatitis C treatment.  And while my current state is not unexpected, it did surprise me with a mother load of anger, frustration and self-pity.  Seems I was pretty comfortable with my solid 30 on the activity scale and so anything less than that has me, momentarily, questioning my sanity and choices.

So what am I doing to cope?
  • Recognizing that I currently have just a few precious hours of energy to spend on activities each day.
  • Limiting the number of activities I attempt each day and letting everything else just be for now.
  • Paying more attention to what times of day work better for me and scheduling activities accordingly.
  • Incorporating a rest period after every activity, from 15 minutes to 1 hour.
  • Asking for more help and delegating tasks when I can.
  • Taking advantage of more time and energy saving conveniences, like frozen meals, takeout and online shopping.
  • Napping and sleeping a whole lot more.
  • Lowering my expectations to meet my reality and working on being mentally and emotionally OK with that.
  • Showing more compassion and understanding towards myself.
  • Basking in the love and support others are showing me right now.
  • Making sure I do something fun and soul-sustaining every day.
  • Praying to the Universe to give me the strength to get my through my current challenge.
So how do you handle setbacks?  What strategies and coping techniques help you deal with a decrease in functioning when your symptoms increase?  Please add to my list by sharing your ideas and thoughts in a comment below or over on the Oh My Aches and Pains! Facebook page.

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2 comments

Anonymous said...

HI SELENA:

I AM GOING TO TRY MY ENGLISH HERE,I WAS DIAGNOSED WITH FIBROMYALGIA IN 2008,AFTER A KNEE SURGERY, TO FIX A MENISCUSS TEAR.THIS ACCIDENT HAPPEN HAPPEN TO ME WHEN I WAS WORKING AS A HEALTH SPECIALIZED NURSE AND INSTRUCTIONAL AIDE, FOR THE SPECIAL EDUCATION DEPARTMENT IN A SCHOOL DISTRICT.AFTER SURGERY I WAS INTO A LOT STRESS BECAUSE MY WORK INSURANCE WAS TAKING A LONG TIME FOR APROVAL OF MY PHISICAL THERAPY AFTER SURGERY, I GOT A STIF KNEE,LOTS OF PAIN UNABLE TO DO A LOT OF THINGS, I WAS A MESS A END UP IN THE EMERGENCY ROOM,I STAR WITH THE WORST HEADACHE IN MY LIFE,WELL LATER ON THE EMERGENCY DOCTOR SEND ME TO SEE A REUMATOLOGY,SHE SAID TO ME YOU HAVE FIBROMYALGIA, AND I ASK HER WHAT IS THAT? SHE GAVE ME SOME PAPERS TO READ AND SHE SAID COME BACK IF YOU NEED HELP.I LEFT THINKING O THIS IS NOT SERIOUS,SHE DID NOT GAVE MEDICATION,SO I CONTINUOS HANDELING MY INSURANCE ABOUT MY INJURE,AFTER A WHILE MY DOCTOR WHO PERFORMED MY SURGERY SEND ME BACK TO WORK WITH NO RESTRICTIONS,AND I TOLD HIM I AM NOT FEELING OK, I HAVE LOT OF PAIN, I CAN NOT DO MY LIFE LIKE BEFORE,BUT HE SAID YOU HAVE TO GO BACK TO WORK,I WENT BACK TO THE DISTRIC WITH THE LETTER,I WENT TO RISK MANANGMENT DEPARTMENTE,ONCE THERE I LET TO KNOW THE SUPERVISOR THAT I WAS NO READY TO GO BACK TO WORK WITHOUT RESTRICTION,THAT WAS IN PAIN,AND UNABLE TO DO A LOT OF STUFF THAT WAS REQUIERED IN MY DUTTIES. HE SAID TO ME "I AM NOT THE DOCTOR IF HE SAID YOU READY TO WORK YOU READY TO WORK". AND HE SEND ME TO WORK. THAT'S WERE MY NIGTHMARE STARTED,UNTIL NOW. SELENA IT IS BEEN A LONG JOURNEY SINCE THEN. IN DECEMBRER 2011 I WAS DIAGNOSED WITH SPONDYLOARTHRITIS UNDIFERENTIATED. THANK YOU FOR WHAT YOU WROTE IN YOU BLOGGER TODAY,SINCE SUNDAY I AM BEING IN BED, WITH A LOT O PAIN,CRYING,ANXIOUS,DEPRES,THINKING THE I AM NOT WORTED....ETC. MY FAMILY IS VERY SUPORTIVE,TODAY I HAVE A TELEHONIC CONFERENCE WITH MY SICOLGY, AND I JUST WAKE UP MINUTES AGO, BECAUSE I WAS HAVING NIGTHMARES,TOLD MY DAUGTHER I DONT WANT GO BACK TO SLEEP, I HATE NIGTHMARES,SO I WAS CHECKING FACEBOOK, THEN WAS YOUR BLOGGE... AND I LIKE IT,BECAUSE THATS WHATI TRY TO DO WHEN IM THINKING CLEAR,BUT WHEN EVERYHING GOES WRONG I FORGOT ALL.... THANK YOU!!! I WILL WRITE AGAIN, I DONT HAVE A LINK.I HOPE YOU FEEL BETTER SOON!!! MY PRAYERS ARE WITH YOU!!!.

Migrainista said...

Great ideas! I think I struggle most with being kind to myself...