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I'm tired of living my life sick, in my pajamas!

 

Every time I start to get better and start imagining myself at a party wearing a skirt, I get hit with another food that makes me sick.

 

Ever since I found I was gluten intolerant and went gluten free, any slight change in my diet gets me every time!

 

I avoid sugar but I was feeling deprived and had some sugar last night, not a lot, but too much because I woke up this morning with symptoms I haven't had before: sore swollen nose, sore swollen red throat, glands in neck and eyelids swollen, slight shortness of breath, nausea, fever.

 

I went and sat in the ER parking lot and took Benedryl. The benedryl worked well so I came home.

 

I already posted for an Allergist referral.

 

I'm starting to feel allergic to life. I'm *#@$%!! tired of being me today. I'm really starting to lose hope that I will be able to have a normal life again, have a job, a social life, etc. Am I just supposed to get used to this?

 

How many of you are in the same boat? Unable to work or do much of anything?

 

Ugh, I feel the Benedryl wearing off I think.

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I'm tired of living my life sick, in my pajamas!

 

Every time I start to get better and start imagining myself at a party wearing a skirt, I get hit with another food that makes me sick.

 

Ever since I found I was gluten intolerant and went gluten free, any slight change in my diet gets me every time!

 

I avoid sugar but I was feeling deprived and had some sugar last night, not a lot, but too much because I woke up this morning with symptoms I haven't had before: sore swollen nose, sore swollen red throat, glands in neck and eyelids swollen, slight shortness of breath, nausea, fever.

 

I went and sat in the ER parking lot and took Benedryl. The benedryl worked well so I came home.

 

I already posted for an Allergist referral.

 

I'm starting to feel allergic to life. I'm *#@$%!! tired of being me today. I'm really starting to lose hope that I will be able to have a normal life again, have a job, a social life, etc. Am I just supposed to get used to this?

 

How many of you are in the same boat? Unable to work or do much of anything?

 

Ugh, I feel the Benedryl wearing off I think.

 

You are most certainly not alone. I'm right there with you! Every time I think I'm over the hump, something that I have no idea was a problem becomes a problem and I need to stay in tight orbit around the bathroom. I feel like my ball and chain is made of porcelain.

 

I hope we don't have to just get used to it. I wish doctors were more useful, but alas - it seems most people here can attest that this is all a trial and error disease. You find a formula then stick to it. Mine is currently rice, water and the waves of sorry and depression that keep washing over me every time I think about my body.

 

Sorry to not be more comforting or cheerful! It's a hard row we're hoeing here.

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I got sick and tired of not having a life too. So I said screw it, I'll have one. When I decide to do fun things, I am careful not to do any experimenting. I am hyper-vigilant about my diet before big days or events.

 

And sometimes my husband just wants to go out for the day on a whim. This is doubly difficult for me. It isn't just a matter of what will I eat out of the house for the day. (I keep snacks I can grab and go, and have save places I know I can run into for a bite to eat.) With my CRPS, a day out can mean pain that will leave me crying myself to sleep at bedtime. It isn't just pain, it will wear me out and wear me down. For a long time I gave up wearing dresses and skirts, afraid I looked like a freak with the ridiculous swelling of a single leg. But I choose. I can choose to live life in my house, wishing I had the guts to push through and do fun things once in a while. Or I can choose to just do. Pack up those snacks, and hope they're enough. Go out with my best friend to Denny's for an afternoon and order a soda and just talk. I honestly don't even notice she's eating. Heck, sometimes I bring my own food and no one has ever batted an eye at it.

 

Most days though, I choose to live life in my jammies. Life is comfy at home in my jammies. Seriously, life with a bra is overrated. Or maybe I'm just getting old. But at this point, I'm glad I've realized that I'm making a choice. For a long time it wasn't a choice, and then even when it had become one I felt like it wasn't... I just didn't see that it had become one. Maybe by embracing the small ways that you can make choices to have a life outside your jammies you can start to feel freedom again and have a little more peace with things while you heal.

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i second the bra thing!!!!!!!!!!  :D

 

i do the same thing:  if i'm planning to (go on a trip, to an event, whatever that i don't want interuppted) i eat my "safe foods" for days leading up to such event. 

 

here's my situation:  i worked for 30 years, while raising 4 kids and my husband is on the road most of the time.  all the while getting sicker and sicker for no apparent reason.  when i first quit working, i watched my grandbabies so their parents could work.  (i'm still watching one of them) so i don't feel useless.  and i am able to do more things now if i am careful because i have more energy.  some days, i am thankful to have the luxury of resting.  being as i worked and things are set up so that my income isn't necessary anymore.  i paid my dues and now it's time to take care of me!  and, the reason things are set up the way that they are is because i was planning to die of malnutrition.  <and now i'm not  :) 

 

the bottom line is:  if you never got diagnosed, you would feel worse and worse.  i get enough good days to satisfy me, whereas before dx i just felt crappy all the time for seemingly no reason.  when you finally figure out what works/doesn't work for you, your attitude will adjust as well.  i hope you feel better!  but, if you weren't treating it, you *wouldn't* feel better.... ever........

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I'm in the same boat as you too. It's 3:30 in the afternoon on a Saturday and I'm in my jammies.

I am going through a particularly hard rough patch in my health right now for some unknown reason. Seems like I should be feeling better. I so am thankful that my hubby can provide for us, since I have had to cut back from my 45 hour a week job to about a 5-10 hour a week work from home job about a year ago. I can't imagine being able to get up and go to work everyday at this point. I actually haven't been out of the house at all this week, but tomorrow I am hoping to go to the grocery store if I feel better. Not too exciting of a life at this point, but am hoping this will pass soon. I also have my two fur babies that who are always happy to give me a cuddle and a kiss when I am feeling down, and they help being stuck at home feel a little less lonely.

I do get envious when I see people on Facebook posting their travel pictures or when I hear people talk about all of the running around they are doing. I can't imagine having that kind of energy-but maybe someday? I actually had planned a couple of low key getaways for the spring and summer, and am wondering how that is going to work out. Hopefully I will feel better by then and will be able to go.

Thank you for posting this. I'm sorry to hear you are feeling so bad, but I have been wondering if there are others out there in the same boat as me too. I hope you feel better soon.

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Oh boy...do  I ever understand this thread.

 

The worst time seemed to be about a year to two years after I was finally diagnosed with Celiac Disease -- after all -- we finally had a name for what was making me so sick and all I had to do to improve my health was remove gluten, right?

 

Here is the brutal truth -- some of us take a very long time to have improved health and may never live without some issues caused by long undiagnosed celiac disease.  

 

Thankfully -- if you keep looking for answers, you will improve and the jammies during daylight hours become a treat on a rainy afternoon rather than normal everyday wear.

 

Last month this time I was just finishing up a 5-6 month severe flare that left me completely unable to function -- today I woke with my usual painful joints and muscles, but was up and moving nice and early and have been going strong for the last six hours....I may burn out in the next hour as we have a Santa Ana forming here which kills me as I am intolerant of heat -- or I may be able to keep my temp perfect by jumping in the pool and make it until the evening.

 

Here is hoping we all get to choose which are to be livin' in jammie days ;)

 

Hang in there :)

 

PS...edited to add for newly diagnosed peeps -- most people with Celiac Disease only need to remove gluten and be patient during the first months for healing to happen.  Unfortunately, those of us that went undiagnosed for long periods of time seem to take longer and have a few more issues.

Edited by GottaSki

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I don't know if I don't WANT a life because I'm too tired, or if I'm so tired because I have no life. I hate going places and doing things and if I could stay home in my jammies all day I would love it! I guess my life is here at my shop, but when closing time comes, everybody get out of my way - I'M GOING HOME!

 

I don't know if I'm always so tired because of celiac, because of my age, or if it's because I work so many hours. Maybe I just need more exercise. Got a whole bunch of vitamins I can take (finally!) so maybe after a few more weeks on them I'll have more energy.

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Thank you all so much for your comments. It makes feel so much less alone to know you can relate. It’s been two years for me and several times I thought I was just about over the hump, then I’m not. It gets to me sometimes.

 

We all have stresses, and a biggie for me is that I will be turning 50 later this year, and here I am, divorced (thank goodness), but living in a studio behind my mom’s house, no job, no savings left. It’s like being a teenager! It’s a bit embarrassing and a huge lesson in accepting that I don’t have control over my life. I work in a creative field, and I miss being part of a team environment. I’m not good working at home alone, if I even had the energy, which is soooo unfortunate, because that would be perfect!

 

Don’t get me wrong, my jammies are nice :) but my other clothes (and bras) :) are wondering what happened to me! I want to get back to my life and tell my family something other than, “nope not better yet”… I’m tired of that look on their faces.

 

I have many blessings. I work on creative projects, when I have it in me. My mom only feels bad I’m sick and is happy to help me. I would rather be helping her at this point though, ya know? She knows her investment will pay off when she really needs me, but at times I worry that day won’t come.

 

Some days I find acceptance, others not so much. Thanks so much for your support though, all of you, it means the world to me and keeps me going!

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In my experience -- it was a lot harder and took a lot longer for me to accept that I could not do everything I needed/wanted to do, than it was for my family or my friends -- after all they were still off living and doing.

 

We all have those days -- here's hoping you have more good than bad each day :)

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Oh man oh man do I relate to what you're going through.

 

I'm just glad now when gluten doesn't make throw up and I *only* have explosive D. And I also wonder when *only* D for a few days became a GOOD thing? And the exhaustion. And the utter inability to complete my own sentences/thoughts much less listen to and process someone else's. 

 

I've been anti-nap my entire life. It was always be go go go go go. Now, I can't function to even eat dinner without a nap. And sometimes I don't even eat dinner at all because I'm too tired. 

 

I felt so much better at about the four week mark and could truly tell things were slowly better. Now, at going on five months, I'm definitely at a stand still and down in the dumps.  No energy for the whole day but some energy for part of the day. Baby steps. Little bitty tiny ones. 

 

We will get better!! Hurry up and wait!

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