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Dealing With The Emotional Aspects Of Ai Disease


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#1 BelleVie

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Posted 03 December 2013 - 02:30 AM

It feels like we talk a lot on here about dealing with the physical aspects of celiac, but I'm curious as to how you all deal with the emotional aspects? Lately, it's really been hitting me deeply with the realization that i'm going to have to deal with this every day for the rest of my life, and that sometimes, even though I seem to be doing everything right, my body still gets angry. Today, I really wanted to talk to my mom (about what, exactly…I don't know. Just to say that it's hard dealing with this, I guess?) but I stopped myself because I knew she wouldn't understand. I'm only 25 and sometimes I'm just so tired, physically and emotionally. How can I even think about moving forward, getting married, having children, all of those things, when I can barely keep my body functioning in a normal way for more than a week or two at a time?

 

 Sometimes I just feel so angry that I've lost years of what should have been good, healthy living to illness and that I have to deal with this now, at such a young age. I haven't been as sick as some, but I also haven't been healthy for a long time. Sometimes it feels like I am getting better and better and then boom…back down the ladder.

 

In a post I made a while back, somebody recommended a mindfulness technique, which has been helpful. I try to write in a journal to organize my thoughts and feelings. 

 

How do you deal with your emotions? I hope this isn't too weepy, weepy, cue the violins! It's just been stressful lately with my job and my health. 

 

Thanks for letting me vent. (Thank you for letting me have  a little pity party. Trying to move on now.)  :)


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#2 KCG91

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Posted 03 December 2013 - 03:02 AM

I can't really offer any advice as I'm still learning to deal with it all but I know what you mean about the ups and downs. And I can't even work out why they happen. What was the mindfulness technique? The novelty is wearing off and the 'rest of your life' is weighing on my mind a bit. I don't miss actual gluten products at all, but at the moment I hate being different at the moment, especially at such a food-orientated time of year. Also there are certain 'rituals' that involved gluten in my life that are no longer - me and my Dad's 'thing' was to go out on our motorbikes and stop somewhere for Guinness by the river. I know I can probably have cider or something instead and in the scheme of things it's really minor but it was always Guinness and it still makes me sad. 

I sympathize with your worries about the future. I'm 22 and in my final year of university and planning to do a PhD next, so ordinarily I'd be looking for a flatshare but I just can't face the thought of moving in with strangers and dealing with another shared kitchen, so my plans are changing because of it, and that will knock onto my social life and finances.

 

This weekend my boyfriend and I were chatting about holidays next year - previously we've stayed in hostels around Europe and getting food from the market plays a big role in that. Watching his little face fall as he realised that that would be a lot more complicated/not a part of our holiday was horrible :( 

 

These things are all minor but when you add them up 'for life' they get me down. And yeah then there's what seems like the battle to keep yourself healthy/healthier FOR EVER! Gah. Jeez body I looked after you as well as I knew how for twenty years, just behave! I hate the times where I have a run of good days and then for no obvious reason a few bad ones - I feel like I can't tell people I'm feeling bad if I can't explain why... And I feel like my friends and family have listened plenty to me talk about the physical side so asking them to listen to these little worries is unfair. 

Sorry for crashing your post! /endpityparty!


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#3 BelleVie

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Posted 03 December 2013 - 03:50 AM

Not at all, thank you so much for the response! There's an open door to my pity party. Please, pull up a chair. :D  It makes me feel less alone. It's hard. Even when you have a partner, they still don't *quite* get it all the way. I've not been home yet for the holidays with celiac, but I am trying to imagine how it will be when I go visit in April. My family has always enjoyed going out to dinner together, and now that is going to be very difficult for me, and I'm not sure they will understand. And I hear you on the finances/social aspects of dealing. I used to think I could live my life adventuring about, the way that I have for the past few years, but now I crave food safety, and that's really difficult to get when you are hopping from hostel to hostel in who-knows-where. Lol, "Geeze body…just behave!" That is too funny, and it's exactly how I feel too. Before celiac, I was always SO FRUSTRATED because I was ill, so I ate organic, exercised, drank clean water, did yoga, and recycled, darn it (!) and I was still sick. Now I know why, but I wish my body would stop acting like a jerk! Haha. Thanks for coming to my party. I hope you enjoyed your time here. Lol.  :P


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#4 GF Lover

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Posted 03 December 2013 - 04:40 AM

Hi Guys, I'm coming to the Party  :D

 

Bellvie, I'm glad you enjoy the Mindfulness technique.  It can diffuse an emotional situation quickly too.  

 

You guys are young and you will get this all under control.  You can still socialize, travel, have fun with friends but you now need to do it with food safety in mind.  Carry snacks/food with you all the time so you can pop in that coffee shop with friends and enjoy yourselves.  You need to get this new lifestyle nailed down, then it won't be such a hardship on you, it will be second nature.  KCG, it is possible to live with gluten eating roommates.  It is difficult to get it working smoothly but it may be worth it for your sanity.  We can help you get that all sorted out if the time comes.

 

There are so many reasons to keep your body very healthy from now on.  As your lives evolve you may encounter sickness, broken bones, diseases and the like.  You must stay strong and healthy to recover from these things.  In your generation there will be so many more improvements with gluten free foods and a focus on cc so I do believe it will get safer for you to enjoy restaurants.

 

Consistent exercise will keep your endorphins sailing.

 

Don't be sad guys, this is the beginning of a long healthy life and you are only going over a speed bump  :D

 

KCG, here is some information on Mindfulness for you. 

http://www.mindfulness.com/

http://en.wikipedia....ss_(psychology)

 

Colleen


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#5 BelleVie

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Posted 03 December 2013 - 05:10 AM

Aw gee, thanks Colleen. :) I could not remember who had recommended that to me, but it has helped, especially when I start to have my freak outs at work! Exercise is something I'd like to get involved with again, but it's been unrealistic this year with my health and my job. (I work from 9 to 6:30 with no breaks..eek…so I'm very, very tired when I get home.)

 

And I need to get more snacks!! Speaking of which...

 

please help yourselves to my homemade gingerbread men right here on the table. Hey, if we're having a pity party, we might as well eat some good food! lol.  


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#6 GF Lover

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Posted 03 December 2013 - 05:15 AM

Hey Bells, how is your gluten-free diet going?  Are you still having severe symptoms?  I forget when you started, my brain is forever stuck in the fog  :lol: With that much working I think your good on the exercise for now.  

 

I'll just stuff my pockets with those gingerbread men  :D

 

Colleen


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HAVE A SUPER SHINY DAY

 

LTES gem 2014

*BiPolar, Major Depression, Anxiety *Hypothyroidism, *Celiac

*Metastatic Melanoma, *Immunotherapy Mitigated Vitiligo, *General Insanity

"We cautiously travel through life to arrive safely at our death" - J. R. C. , my Son.

 

Are We There Yet? and Dad says...All you have to do it ride it out.

 

Comments/views/opinions expressed on the site are my own and are not representative of Forum Admin/Owner

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#7 Nikki2777

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Posted 03 December 2013 - 06:49 AM

I can't say that I've mastered this in the 9 months or so since my diagnosis, but for the most part, Celiac is just a thing that I have to deal with.  I'm a lot older than you, and I imagine that if I had another 50 - 60 years ahead of me to feel like I'm ALWAYS going to have to deal with this, it might get me extra down.  

 

But, what helps me are a few things - the first is the belief (right or wrong) that maybe in 5 - 10 years they will come up with a solution for this that will allow me to have a few favorite foods again.  Kind of like that alcoholic's "One Day at a Time". Another thing is the realization that fun and social life doesn't have to be about food.  Now, I've always been heavy, and I've clearly loved my meals, so this is a big realization for me. These last few months, if I don't feel safe, I just sit with my friends and have a glass of wine, and eat at home later, or munch on a KIND bar on my way out.  I agree that the travelling will be tough - I'm just about to start again - and I will miss being able to eat local specialties, but the alternative -- feeling as crappy as I did before my dx - is much, much worse.

 

Good luck!


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#8 bburmeister0407

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Posted 03 December 2013 - 07:01 AM

It feels like we talk a lot on here about dealing with the physical aspects of celiac, but I'm curious as to how you all deal with the emotional aspects? Lately, it's really been hitting me deeply with the realization that i'm going to have to deal with this every day for the rest of my life, and that sometimes, even though I seem to be doing everything right, my body still gets angry. Today, I really wanted to talk to my mom (about what, exactly…I don't know. Just to say that it's hard dealing with this, I guess?) but I stopped myself because I knew she wouldn't understand. I'm only 25 and sometimes I'm just so tired, physically and emotionally. How can I even think about moving forward, getting married, having children, all of those things, when I can barely keep my body functioning in a normal way for more than a week or two at a time?

 

 Sometimes I just feel so angry that I've lost years of what should have been good, healthy living to illness and that I have to deal with this now, at such a young age. I haven't been as sick as some, but I also haven't been healthy for a long time. Sometimes it feels like I am getting better and better and then boom…back down the ladder.

 

In a post I made a while back, somebody recommended a mindfulness technique, which has been helpful. I try to write in a journal to organize my thoughts and feelings. 

 

How do you deal with your emotions? I hope this isn't too weepy, weepy, cue the violins! It's just been stressful lately with my job and my health. 

 

Thanks for letting me vent. (Thank you for letting me have  a little pity party. Trying to move on now.)  :)

 

Oh Belle,

I have wanted to post something similar for days (pulling up a chair now) but didn't want to seem like the debbie downer. Great to know that I'm not the only one who sheds a tear occasionally regarding this. I am young as well...ripe ole age of 23. Things were great relationship wise until this appeared. Granted I never felt well, but I can put up a pretty good mask. Shopping and cooking were easy. There were never arguments about food... EVER.

 

Last night I was going to make some amazing spaghetti and meat sauce with quinoa noodles. I let my roommates know that I was going to make dinner and was told, "If it has gluten-free noodles, I am not eating it." They didn't mean it in a "this is gross" type of way but more of a "you have to eat those kind of noodles, we don't want to take that away from you." I already feel like an inconvenience to the rest of the world and now inside my home. I know it is an adjustment for everyone in my life, not just myself...but it sure isn't easy. I notice my blood sugar dropping more rapidly than I used to and because it's all an adjustment, I don't like how I feel just yet. It's better but certainly different. It makes me crazy emotional, I just want to feel better and not feel left out!


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#9 bburmeister0407

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Posted 03 December 2013 - 07:07 AM

Also... I found this little poster on being mentally strong I want to share

 

 

 

Be Mentally Strong 

 

1.) Don't waste time feeling sorry for yourself

2.) Dont give away your power

3.) Dont shy away from change

4.) Dont waste energy on things I cant control

5.) Dont worry about pleasing everyone

6.) Dont fear taking calculated risks

7.) Dont dwell on the past 

8.) Dont make the same mistakes over and over

9.) Dont resent other people's successes

10.) Dont give up after first failure

11.) Dont fear alone time

12.) Dont feel that the world owes you anything

13.) Dont expect immediate results


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#10 Gemini

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Posted 03 December 2013 - 07:45 AM

Also... I found this little poster on being mentally strong I want to share

 

 

 

Be Mentally Strong 

 

1.) Don't waste time feeling sorry for yourself

2.) Dont give away your power

3.) Dont shy away from change

4.) Dont waste energy on things I cant control

5.) Dont worry about pleasing everyone

6.) Dont fear taking calculated risks

7.) Dont dwell on the past 

8.) Dont make the same mistakes over and over

9.) Dont resent other people's successes

10.) Dont give up after first failure

11.) Dont fear alone time

12.) Dont feel that the world owes you anything

13.) Dont expect immediate results

This is one of the best posts in a long time!  I know everyone is entitled to their pity party when first diagnosed but Celiac is not something to worry about or fret that you'll be dealing with this everyday for the rest of your life.  It's just food and there is plenty of great gluten-free food out there so no one should feel deprived.  This from a certified foodie. Take it from someone who has been gluten-free almost 9 years......it becomes second nature and you won't even think about it down the road.  You will go on to live a perfectly normal life like everyone else and be happy.  If I can make a recovery at the age of 46 when diagnosed, anyone can. I am now 54 and work a full time job, have a long commute and exercise regularly in the gym twice a week. Do you think no one but a Celiac feels tired from time to time?  Lots of people struggle with a chronic illness and do fine. Much of it comes from the right attitude and I know once you get through the grieving process, you'll come out good on the other side.

 

Keep  calm and carry on, people........ :)


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#11 gilligan

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Posted 03 December 2013 - 08:25 AM

Well, I don't know if this will help or not.  I'm also older than you, and when I was diagnosed in August my survival instinct kicked in, and my first thought was "it could always be worse, and thank God I can make it better".  I was on vacation when I got the call, so it was quite an adjustment in an instant.  I'm still dealing with digestive issues, so that's what's bugging me more than anything.  You have your whole life ahead of you!  You have the chance now to live a very healthy, active life now that you know what the problem is.  Don't look back!  Look forward!  You can still eat what you like (with adjustments that you'll figure out), and do what you love.  Remember, you'll be feeling good now when you do these things.  It takes planning and organization, and I'm still struggling with that.  Go on that trip with your dad, and take gluten-free beer with you.  Plan, plan, plan and live, live, live!  The best of luck to you!!


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#12 KCG91

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Posted 03 December 2013 - 09:07 AM

*scoffs multiple gingerbread men* 

Colleen, thank you for the mindfulness info. I had heard of it before but couldn't remember the details. And you're very right about exercise too - I've always been active but got my diagnosis in the same month that I completed my first marathon and then, partly because I felt miserable and partly because I was so fed up with the D while running, I let the exercise slide. Today I've run 10k then had a sports massage = happy girl. 

 

bburmeister I know what you mean about feeling left out unintentionally, especially living in a shared place with people you're close to, but not 'family' close (i.e. they don't have to put up with you unconditionally ;) ) I feel that it's especially bad as we'd been living together for 18mnths before I was diagnosed and now I have to explain the changes to them as well as dealing with it myself. I suppose it might actually be easier going into a new flat after uni and getting it straight first off. 

Everyone's right though about the positive side being better health - honestly, my main feeling towards this is gratefulness and relief that I was diagnosed only a few years after seeing signs, unlike some. I'll be back to re-read the advice on this thread over the coming months though :) - right now I'm off to investigate collapsible cooking equipment because it looks like I'll be getting cosy with self catering hostels on my hols! 


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Diagnosed with Coeliac and severe anaemia in September 2013

Gluten free 11/10/13

 

 

 


#13 notme!

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Posted 03 December 2013 - 09:13 AM

(throws self on floor)  i would LOVE a gingerbread cookie!  one that i didn't have to fingerprint or hover over for fear of ("O MY GOSH don't use that spoon!!) someone contaminating it  :(  it's been a rough week (ok, month) for me.  i have had house guests pretty steadily for about 2 months (with little breaks in between) and for about a month of that time i have been down from 2 gluten hits.  talk about these people i love coming hundreds of miles to visit me and all i want to do is sleep.  and the meals?  forget about it:  stress, stress, stress stress stress.  why do they make the person who can't eat normal things in charge of the meals??  i was like:  eat what you want, i'll eat whatever.  i don't care if it's a turkey damn sandwich for every meal; anything is better than 14 people staring at you waiting for a response.  i am so upset by this whole run of visits, i'm seriously considering going away next year by myself.  i honestly felt like such a burden - we have had this thanksgiving tradition (at our house) for 17 years and i am ready to break it.  kkkkkkkkkkk.  deep breath........

 

then some sweet soul posts this:

 

Also... I found this little poster on being mentally strong I want to share

 

 

 

Be Mentally Strong 

 

1.) Don't waste time feeling sorry for yourself

2.) Dont give away your power

3.) Dont shy away from change

4.) Dont waste energy on things I cant control

5.) Dont worry about pleasing everyone

6.) Dont fear taking calculated risks

7.) Dont dwell on the past 

8.) Dont make the same mistakes over and over

9.) Dont resent other people's successes

10.) Dont give up after first failure

11.) Dont fear alone time

12.) Dont feel that the world owes you anything

13.) Dont expect immediate results

 

and it's just what i needed.  and that cookie  :)  thanx, guys, you're all awesome :)


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#14 moosemalibu

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Posted 03 December 2013 - 09:47 AM

I would like to join this party, too. And eat gingerbread. Because gingerbread is one of the most wonderful foods to eat, especially in the holiday season. :)

 

Yesterday I got the news that my resting metabolic rate (RMR) is extremely low. It sent me over the edge. I started a full blown pity party for myself. You see, I work out, I eat for fueling my body for the most part. I spend on average 8 hours in the gym per week. I know I talk about it a lot, but it's my passion and my hobby so I'm sorry if it bugs anyone.

 

When I was diagnosed it was a relief to know that finally I had a reason for stagnant progress. But I am impatient. I know I'm impatient. I want results like yesterday. And with my RMR being 800 kcals it means I have to work even harder to get to my goals. Should I even be worried about this right now? No, not at all. But what else bothers me about this result... (gotten by Sac State by indirect calorimetry btw) is that I worry it's my thyroid. So now on top of having 3 knee surgeries, having celiac disease, now I potentially have thyroid illness. So my next plan is to get a thyroid screen. My last test was March 2012 and my TSH and FreeT4 were normal. But thyroid illness runs in my family and we all know how its linked to celiac disease.

 

So here I am. Worried again. I'm sick and tired of being sick and tired!


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#15 KCG91

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Posted 03 December 2013 - 09:50 AM

 

Yesterday I got the news that my resting metabolic rate (RMR) is extremely low. It sent me over the edge. I started a full blown pity party for myself. You see, I work out, I eat for fueling my body for the most part. I spend on average 8 hours in the gym per week. I know I talk about it a lot, but it's my passion and my hobby so I'm sorry if it bugs anyone.

 

Do not apologise for talking about your exercise! (lifting isn't it?) I like it - certain people around me seem to think that exercise 'caused' Coeliac *bangs head against wall* and then I feel that I'm being irresponsible by continuing with it. So it's great to hear someone else focusing on it to get through the changes. Out of interest, what is RMR? 


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Gluten free 11/10/13

 

 

 



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