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Exhaustion


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11 replies to this topic

#1 Adalaide

 
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Posted 13 September 2012 - 10:04 AM

For me the most frustrating thing is being so exhausted so much. At it's worst I was sleeping as much as 20 hours a day, most days of the week. While the exhaustion is largely physical I'd be too weak to even hold open a book and would fall asleep because I was so bored. I'm glad this isn't as bad as it used to be and I find that most days I'm able to get through from morning to night with few issues. Yes, I have to push myself through. I still never have a day, even on my best days, where I don't contemplate going back to bed at least a few times. Just to lay down for a little while I tell myself, but I know it's a lie and instead unless I am truly so weak I can barely hold my head up I push on through. For me, pushing through is sitting in a comfy chair and simply being able to be awake and engaged in something. Generally computer stuff. Still, it's a huge step for me. I generally limit my physical activity to not more than 2-3 hours a day or I pay for it significantly.

Anyway, a few weeks ago I found out that Blues Traveler, the most amazing, incredible and legendary band to ever exist, was playing a free show at the Utah state fair. I got so excited when I saw this that I nearly peed my pants. They never even do Utah... at all... and now here they were coming to do a free show. I gathered all my info and found out that it required seating tickets which could be picked up beginning at noon on the day of the show. Okay, well... that's a heck of a long day I thought to myself. And so, I spent a week conserving energy, doing next to nothing. What good it did was wasted when I was so excited I spent the two nights before the showing sleeping no more than 4 hours each because I was too excited to sleep.

My excitement was mildly tempered by the fact that my husband and I were going to have to navigate a fair while gluten free. I contacted the fair, explained our situation and was like, can we at least bring some snacks or nut bars or something so we don't starve to death. I wasted this whole long email on it because they just let you bring food anyway. I kind of felt foolish, but score one for us! I packed us a back with Trio bars, frozen grapes and some other snacky stuff knowing that getting drinks would at least be easy. No point carrying around heavy stuff at the fair. By mid-afternoon we were both wiped out though and went and napped in my Jeep. We headed back in to the fair at dinner time and he wanted something more than nuts to eat. Well, time to navigate the magical intricacies of eating at a fair.

Earlier we had gotten popsicles. I asked if they were gluten free and ended up having a long conversation with the girl selling them. She was gluten intolerant and told me all about the gluten expo in Salt Lake next month. It was really great, and so was my avocado pistachio pop. Even better was I knew when I picked that flavor that my husband wouldn't go near it if his life depended on it.

Now though, now he wanted meat. There is a local restaurant well known for safely serving gluten free foods and they had a booth in a building at the fair. I was like score! We'll just go there. We walk up and I ask if everything they serve is gluten free. (Since it was served as a large platter we could share.) The woman paused (alarm bells) before saying yes, then the man said no and they got into a debate about how and why parmesan cheese has gluten in it. I checked them off as morons and moved on.

I told my husband maybe we should check out that Hawaiian BBQ place, he was pretty excited because they were doing renaissance fair style turkey legs. I walked up and asked the girl if all of their meats were gluten free, she said without pausing and confidently and simply "yes." Why does this turn into rocket science for other people? She didn't look at me like "derp wut is glutenz?", she didn't pause or hesitate and because she knew it would be an issue for many people at the fair she knew to have an answer. Maybe I should have played 20 questions, and in a restaurant or something I'm sure I would have. But, her simple quiet confidence made me quiet sure she knew exactly what I was asking and that she was sure she was giving me an honest answer. We walked away with a turkey leg and both felt fine all night! We picked up some diet apple beers to go with it and had us a grand time waiting to be let in to the concert. I also realized at this time that there is something magical that comes alive inside a man when he walks around carrying a roasted turkey leg. It's like this primal manliness, it's quite amusing.

Anyway, I managed to push through the whole day and the night. I'll pay. I rarely push through a whole day like that and I know that I will be sore, tired and miserable for days to come. I also had by far the most amazing night of my life last night. I have no voice today. I lost it screaming like a 12 year old at a Justin Beiber concert. For that 1 1/2 hours, I had the energy of a 12 year old though. I danced and clapped and threw off the shroud of exhaustion.

So, I managed a fair, getting food safely and without making us both sick. I went to see the best band ever. I'll pay for days, I'm so exhausted now I feel like I could just keel over. But I wanted to share because I know many of us struggle with this. I wanted to say that it is something we can overcome. It sounds stupid, but with a change in attitude (I decided I wouldn't let it rule me any more) and willpower we can have our lives back. No, I can't go spend a weekend hiking in the mountains again. But I could go for an afternoon walk in the mountains. If we know our limits, change our thinking and push ourselves we can have what we want. We simply need to look at what we want differently. It would have been nice to spend the whole day enjoying the fair but I needed that afternoon nap, so I got it. If we tweak our expectations, whether of ourselves or the outcome or something else, we can find ourselves overcoming things we though insurmountable because of this dreadful disease. I lost 4 years of my life and I'll be damned if it steals any more. I wasn't letting it steal Blues Traveler from me. Don't let it steal what you love from you.
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"You don't look sick or anything"

"Well you don't look stupid, looks can be deceiving."

 

Celiac DX Dec 2012

CRPS DX March 2014


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#2 Bubba's Mom

 
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Posted 13 September 2012 - 10:41 AM

I'm SO proud of you for pushing through this..and getting out for a fantastic day! You're right..we have to make some adjustments, but we don't have to give up living. Sounds like you made a long string of good decisions and got to reap the benefits?
:D
"Once upon a midnight dreary I woke with something in my head....."
Sorry that was a little off key. ;)
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#3 Adalaide

 
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Posted 13 September 2012 - 11:12 AM

Psh, who cares if you're off key! The awesome thing about a concert is you can sing along and no one can hear you. The crowd was having a little trouble perking up but like seriously two notes into Run-Around and everyone was crazy wild excited. They also did Hook, which is by far my favorite. I was like... 100 feet from John Popper. OMG!!! I don't know how I didn't feint.

I have "friends" who are like who's Blues Traveler? I'm like... you're dead to me. Just kidding. Maybe. Probably not though. Have these people spent the last 25 years under a rock? I love you so much right now for knowing them!
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"You don't look sick or anything"

"Well you don't look stupid, looks can be deceiving."

 

Celiac DX Dec 2012

CRPS DX March 2014


#4 Jestgar

 
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Posted 13 September 2012 - 11:26 AM

Sounds like a great day! I recently tackled our state fair with a bag full of snacks and determination. My bud and I took the bus to skip the parking hassles, and did a lot of sit-down stuff in the afternoon. Still a really long day, and it took three days for me to stop feeling wiped out, but well worth the fun. :)
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"But then, in all honesty, if scientists don't play god, who will?"
- James Watson

My sources are unreliable, but their information is fascinating.
- Ashleigh Brilliant

Leap, and the net will appear.

#5 Adalaide

 
Adalaide

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Posted 13 September 2012 - 12:26 PM

I'm spoiled with fairs. I grew up going to one that was actually in my town that is huge. You can, and many people do get lost in the fair every year. You can go for a whole day and not see everykthing. I'm used to a rather large fair. Now, the Utah State Fair was fun don't get me wrong but I expected enough stuff to be more than I could reasonably see in a day and to keep me busy all day long. In two hours I had seen everything and pissed off the peta people which was certainly highlight of my afternoon. :lol:
  • 0

"You don't look sick or anything"

"Well you don't look stupid, looks can be deceiving."

 

Celiac DX Dec 2012

CRPS DX March 2014


#6 GottaSki

 
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Posted 13 September 2012 - 01:54 PM

Great band - favorite of our family - young and not so young :P

"It seems my ship still stands no matter what you drop"

Great catch phrase for the tenacity of silly-yaks - so great to hear you had an excellent adventure - inspirational too!

Thanks for sharing :)
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#7 Jestgar

 
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Posted 13 September 2012 - 02:36 PM

Ours isn't bad.

http://en.wikipedia....i/Puyallup_Fair

Loved the bantam chickens
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"But then, in all honesty, if scientists don't play god, who will?"
- James Watson

My sources are unreliable, but their information is fascinating.
- Ashleigh Brilliant

Leap, and the net will appear.

#8 ravenwoodglass

 
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Posted 13 September 2012 - 03:00 PM

I was in tears by the time I finished reading your post. I am so happy for you that you were able to overcome and have a wonderful day. Even after all these years I still have so little endurance. But heck if you can find a way to do a long day like that maybe I can find a way to go to the hydro-boat races in a couple of weeks or even out to dinner. I'm in bed most nights by 7:30 and it does put a crimp in ones social life. You have inspired me. If you can do it so can I. Thanks for posting.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#9 clogger69

 
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Posted 22 September 2012 - 03:15 PM

This is an amazing post for me to just read. I am 72, dx March 09. I just had knee replacement surgery 7 weeks ago. I feel like I will never get any energy. The knee seems to be doing ok, just not the rest of me. Nausea, no appetite, food does not taste good, losing weight, anemic, just no energy. I believe the Celiac is playing a part in how hard this has been, and of course age :( This weekend is our local Blues Fest, great local musicians(Lansing, MI), headliners from Chicago & Detroit, and I cannot push for this one! I was/am a dancer, love the swing and nothing better for that than some Blues B)I will be there next year!!
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#10 Adalaide

 
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Posted 22 September 2012 - 04:51 PM

I had a simple scope done a few years ago on my knee and that was a heck of a recovery. You're right, pushing it this year could do more harm than good on that one. But that does sound like an awesome time! I went to Brigg's Blues Fest back home in PA which was always a blast but haven't found anything that can compare out here in Utah. We have lots of ethnic festivals based around food, but frankly those don't really interest me any more. Sounds like you have a great never give up, never surrender attitude. That's what it takes to get us through!
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"You don't look sick or anything"

"Well you don't look stupid, looks can be deceiving."

 

Celiac DX Dec 2012

CRPS DX March 2014


#11 love2travel

 
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    ńĆeznem da se u Hrvatskoj!

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Posted 22 September 2012 - 05:26 PM

Adalaide, good for you! I love that you are not allowing this to control you. I refuse to as well. Chronic pain used to rule my life. Now it does not. Sure, pain is a killer each and every single day but you are so right - attitude makes all the difference. Once you get into that mindset, it develops into habit and before you know it you are living differently.

Sounds like that was a great concert! I believe I heard some screaming all the way to Alberta. :P

We're going to Paris next week for five days then to our house in Croatia for three weeks. On paper that is impossible for me. Those flights are killers. They mean intense pain so I am filled with fear for several days leading up to each trip. When you are in severe pain on a long-haul flight during tubulance (i.e. you cannot stand) it becomes an impossible situation. Pain grows into agony. And yet I put myself through this. Why? Because travel is one of my loves. I must and will do it. It nearly does me in physically but after a massage the day after arrival and a sleeping pill for that first night I feel so good mentally. Flights are pretty much the worst thing you can do for herniated discs. But I must live. And since I live, I may as well enjoy doing it as much as I can.

So for anyone who lives in fear avoidance, stop it and do what you love to do. If I can fly long flights with my kind of pain and exhaustion, anyone can do pretty much anything.
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<p>Confirmed celiac disease February 2011 from biopsies. Strictly gluten free March 18 2011.Diagnosed with fibromyalgia April 13 2011.3 herniated discs, myofascial pain syndrome, IT band syndrome, 2 rotator cuff injuries - from an accident Dec. 07 - resulting in chronic pain ever since. Degenerative disc disease.Osteoarthritis in back and hips.Chronic insomnia mostly due to chronic pain.Aspartame free May 2011.

When our lives are squeezed by pressure and pain, what comes out is what is inside.

#12 heather806

 
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Posted 22 September 2012 - 06:18 PM

I am glad you were able to enjoy the day! I really feel for those of you who suffer from exhaustion -- how long have you been gluten-free?
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