No matter the name of the chronic disease attached to us, we all deal with the same things. Yes, we all agree that it's best to pace ourselves, but life doesn't always happen that way!
It all comes down to what we are willing to pay for what we want and need to do.
My 'ups' are having the grand kids here, love to have them all charge in and spend a few days, and push myself to the max. Why? Because it may be the very best day for the rest of my life, so I push myself to the max then crash!
It's the same with getting out of the house to go somewhere besides the Doctor's office, drug store, or grocery store. If I am going shopping, I have to go somewhere where I can have a wide selection. If I'm in need of clothing, and the sales are on, I'll go full tilt and shop for hours to get everything I need for that season, as riding in the car is so difficult for me... Then I crash!
I know I should pace, but there are so many factors and loved ones involved!
Great post SK! I am so glad you have the grandkids to keep you gassed up! My 13 year old twins do the same. I love your question about the ups and downs of chronic illness...great thought. My ups include family and the few days that I feel pretty good. My children and their father keep me going and love me unconditionally, which is the only way I am surviving this with a semblance of sanity. I am getting married to twins' father August 29th- just a very small ceremony- less than ten people and basically just a signing with witnesses.
The downs seem to outweigh the ups sometimes...mine include severe pain and anxiety/depression that are all completely crippling. All of you on BF have been great sources of strengths (another in the up category;) but sometimes the diseases win.
hi .. good post..... have my "good days too".... then CRASH...nasty .. never know when or what tomorrow will be... tough to make plans...( pretty unsettling to say the least... but I AM SO THANKFUL FOR THE GOOD DAYS!!!!!
Congrats! I so relate to all esp wjen there is a wondow of opp, I try to.do groceries, take the trash etc I also make an swesome. Gazpacho…I knotw too muchh acid. I also havee.days when I crsve stuff like sauerkraut, pickles, hummos gluten free ee.cha low.sodium v-8. Change s.week to week. anyone.else gobthrough this? I am single and no way i am pregnant so it baffles me
Thank you SK. I appreciate the kind thoughts. We are hoping the tiny nuptials go smoothly...never know when the good and bad days strike. Going to have our kids there- must be strange for them to watch their parents get married only when they are 13. We are already a family though so the adjustment should be seamless. I hope you are doing well, slmo
I completely agree we never know when the day will be 'good' or 'bad'. I find this very frustrating...but as you say am very thankful for those good ones. I hope you are doing well, great to hear from you!
Hi Flops, I like that you describe good days as a 'window of opportunity' ... great way to describe the mindset that we feel on those few good days! I crave foods intermittently as well. And sometimes my appetite completely goes away or is ravenous. I crave sweets sometimes, or very salty foods. The good thing is that sauerkraut and fermented foods are very good for you so I think you are on to something!
Thank you for the encouragement dkel. We are getting married in a park with 8 people to witness. Should be nice and intimate. Regarding Mrs. slmo I think you know the answer to that....fierce independence!!
I love the term Brother Tick for the same reasons- Richard is like a guidepost for us and he is a natural leader with strong people skills. Richard you are kind, caring, conscientious and always good for a deep insight or wonderful laugh!