I have finally learned I can't do everything

[Guest guest]

We moved into a brand new house 2 years ago in January. We have

tried to sell this house and for some reason it won't sell, we have

decided to stay and start doing some permanent decorating, my

husband who has never painted a room in his life decided he wanted

to paint our bedroom. I have done this many years ago before the

pancreatitis and it was a job then. I thought well maybe I can help

tape around the windows maybe around the doors, then after this I

though well maybe I can cut some paint in around the corners and

help. Ha ha the joke was on me yesterday I was sooooo sick, the pain

was back to the way it used to be and today isn't the greatest. I

have periods of time where I just need to sleep if this doesn't

happen I get real draggy, and just feel bad no energy just blahhhh.

I know that activity really gets me, it used to be when I went to

Indianapolis to see my Dr. I would sleep for 3 days after. Are there

any others out there who have these activity limitiations? I have

felt so much better since I have had the pump placed but there are

times if I do too much, the next few days are just awful. Don't get

me wrong the pump has truely been a God given gift for me and helped

tremendously, but there are times if I push it I pay for it.

Atwell LPN

[Guest guest]

,

I think the fatigue is probably the most frustrating part of dealing with a

chronic illness. In my case, I never know which illness to blame the fatigue on

and I guess it really doesn't matter whether it is the lupus, chronic

pancreatitis, autoimmune liver disease, or maybe just anemia that's causing it.

For the last 2 months and really even for years before that (off and since a

year or so prior to being diagnosed with lupus), I get so tired with the least

bit of exertion. For me, exertion can be nothing more than showering and

getting dressed on some days! It's been really much worse than normal for the

last two months. Today I had an appt with my internal med doc. I was going to

drive myself, but my mom insisted that she and my stepdad would take me. I'm so

glad they did. I took a shower and dressed and I was soooo exhausted that

walking to the car seemed hard. I slept almost all the way to the doctor's

office - it's a 45 min to 1 hour drive. The doctor did do a urinalysis because

I had been thinking I might have a UTI. I've been running a low grade fever off

and on for over a week now. Sure enough there was a good bit of blood in my

urine. He put me on macrobid and sent the urine off for a culture to make sure

the macrobid is a good antibiotic for whatever is causing the UTI. He also did

a CBC, liver functions, and a protime to see if my INR is where we want it to

be. I slept almost all the way home from the doctor's office. Since getting

home, I've had one short spurt of energy and gave my dog, KayDee (min.

dachshund) a much needed bath and trimmed her nails.

Back to the fatigue, even when I am at my best, I have found that for one 'sort

of normal' day of activities, I need about 2 to 3 days of rest. If I do not

rest when my body tells me to, you can be sure I will end up in the hospital. I

think that's a lot of the reason that I spent most of the month of June in the

hospital following Nikki and 's May 29th wedding. I tried my best to

rest as much as possible and delegate jobs, but still it was just too much for

me. However, I'd do it all again in a minute. I made it through the wedding,

in part by going to the ER the night before the wedding, getting IV fluids and

IV med for pain and nausea and then just not eating much the day of the wedding.

Nikki and left for their honeymoon and had no idea I had been to the ER

in between the rehearsal dinner and wedding and that I was in the hospital

during most of their honeymoon. I told them when they got back but I threatened

my husband with death if he dared let them know I was sick until after their

honeymoon!

The fatigue really sucks and sometimes I feel like such a useless slug. My

husband and family are so wonderful and understanding. They never make me feel

bad for having to rest so much. In fact, they typically get onto me for doing

too much, when to me, it seems as if I don't do much of anything! It is hard

because I WANT to be the one doing things, making things special for those that

I love. I can still do that to some degree but nowhere near as much as I would

like. That is a hard pill to swallow much of the time. When I'm puking or

having severe pain (not controlled by my meds) then at least I know that I'm not

able to do what I want to do. However, the fatigue often leaves me wondering if

I really could do 'this' or do 'that' if I'd just push myself. The logical side

of my brain knows better than to push myself. However, the other side sometimes

says, " maybe you really are just being lazy and taking advantage of your

illnesses'. I am lucky that I am the only one who says that to me, well other

than a person that I thought at one time was a very dear friend and who had been

like family for about 30 years. I finally had to end my relationship with her

because she was like poison to me. She wasn't really my friend, as I had

thought, and once I was no longer able to be at her beck and call and come

'play' anytime she wanted, she became very nasty and bitter.

Anyway, it is often hard to accept that we can no longer do what we used to be

able to do and that our strength and stamina has been affected by illness.

However, most days I am able to accept it and realize how much worse things

could be.

take care,

[Guest guest]

,

I have learned that I need to limit activities, even on my good

days. I had a celiac block done on June 2-felt sooo good for 20

days! We are finishing our basement, so I painted, stained, sanded,

scrubbed the floors, everything that goes with finishing the

basement, I would feel exhausted when I went to bed, but no pain, I

felt great. My PCP kept telling me to slow down, but I didn't want

to slow down, I was enjoying every minute of not hurting and being

able to do all of those things again I am sure that overdoing it

physically was a big chunk of why the block failed me after only 20

days and landed me in the ICU. Pain has slowed me down once again.

I am no longer " SuperWoman " I am getting another block done on

August 11, and this time I am going slower...and taking the

digestive enzymes. I hate that I can't do things like I used to, but

I am learning that I have limits, and stepping over them usually

causes intense pain or hospitalization.

I am glad your pump works...that is the next step I am considering

if this block doesn't work long. Here is to not overdoing it so we

feel okay!

Hugs,

Suzi B.

Colorado

[Guest guest]

,

yes, I do get pain if I do too much activity. I found that out awhile

ago. I've tried to do things in little steps, but sometimes I forget and

then pay for it later.

Kimber

--

Kimber

Vallejo, CA

hominid2@...

Note: All advice given is personal opinion, not equal to that of a licensed

physician or health care professional.