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the sad realities of chronic illnesses


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I shaved my legs before I showered yesterday- and was so exhausted, I had to rest the rest of the day.

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23 minutes ago, gardenmom5 said:

I shaved my legs before I showered yesterday- and was so exhausted, I had to rest the rest of the day.

I am sorry.  My long covid does similar things and I don't know if it's going to be chronic or not.  It's so hard thinking that it will be.  

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I try my best to forget I've got a progressive illness - easy to do b/c deterioration for me is so gradual - but every now and then I remember that the fatigue has a cause. Lungs don't work good! 

I feel for you. Paying for the legs with the rest of the day. Rest up!

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This was one of the points I had to make very clear to doctors when we were seeking a diagnosis for my daughter. She went from being a 3 sport athlete, to needing to rest half way through a shower.  After she got sick, a regular shower would take her 40+minutes. Not due to lingering, but due to exhaustion. It was one of the few things that helped them understand, that it wasn't just situational depression or malingering. She was feeling quite ill inside, but she looked fine on the outside. 

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According to a family member, people who don’t know you that well minimizing your symptoms, giving off vibes that you are exaggerating or faking it is immensely frustrating. 

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And this is why I gave up shaving my legs. Showers are incredibly exhausting and I always have to rest after one. I also moved from a daily shower to an every other day shower. 

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2 hours ago, Ethel Mertz said:

And this is why I gave up shaving my legs. Showers are incredibly exhausting and I always have to rest after one. I also moved from a daily shower to an every other day shower. 

I have an epilator  - so I don't do it very often, but it's been longer than usual.  2dd took me for a pedicure yesterday for my birthday - and they also massaged lotion into my lower legs.  so, I was glad I had, even though I needed a long nap afterwards.

the excitement is  I found it really does seem to be the benadryl causing my "not- seizures"!  (a nurse friend had two patients who had the same thing, and the dr took them off benadryl.  My dr told me to stop taking it, and that symptom has disappeared!

 

my dr cut my valacyclovir dose in half, and extended it another month.  (it makes me really tired. and the herz reaction ....)  after bloodwork,  my dhea level's were low, so I can go back on it.  (it really helped my energy.)

I'm starting back onto a similar to keto diet I did for a bit years ago.  I just remember how much energy I had when I was fully into it.  It was hard, but now - I need all the energy I can get and it's supposed to help with my other issues.  I'm at my dd's, so I'm limited.  

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3 hours ago, Ethel Mertz said:

And this is why I gave up shaving my legs. Showers are incredibly exhausting and I always have to rest after one. I also moved from a daily shower to an every other day shower. 

Yep. I go every three days from every day. Exhaustion and fear of falling. 

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Posted (edited)

Sometimes, when FB brings up "flashbacks" and I see what I was able to do 5 or 10 years ago, I realize the toll chronic illness takes. I mourn that loss. I know my son has memories of those times. It's hard for him because I'm not as able to do what I did in the past. I think about my daughter and not being able to give her the same things I did for my son for her homeschooling journey.

Edited by calbear
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It was exhaustion rather than mobility problems that finally persuaded my mum to accept help with bathing.

Related to age rather than chronic illness, but I've heard that this equipment is really good for increasing staff understanding  

https://www.heraldscotland.com/news/15441371.video-old-age-simulation-suit-gives-care-home-staff-elderly-experience/

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I find showering one of the most exhausting things to do. I wish life was like the Jetsons cartoon. I haven't styled my hair in about 2 years!  Sorry you're going through this - I completely understand.

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I'm sorry.  I don't have a chronic illness, but my dh has one due to a health event.  He has found he can handle one hour at a time of socializing.  It's not a "just tough it out" situation.  It really, really is all he can handle.

It's aggravating when people say "Just tell him to force himself to put up with/do this this a little longer!"   No, actually, he really can't.  One hour is his limit and then his world shuts down.

Sorry for all of you who are going through this, and wish more people would understand.

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