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sandsurfgirl

Not Doing Well Emotionally

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I'm feeling better physically. I do have a cold right now, and I'm fatigued. Waiting on thyroid and vitamin, iron levels etc. to see if one of those is the culprit.

But, I am struggling emotionally. I know it's a grieving process, but it's very hard at times. The sadness over all the stuff I've lost in life because of celiac is overwhelming at times.

The uncertainty of the future, not knowing how much healing I will get and if I will ever feel "normal" and healthy is overwhelming too.

I want to do this, that and the other, but when I make plans I just don't know what I'll feel like that day, so I can't count on anything.

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Hi Sandsurfgirl,

I myself am on an emotional roller coaster. I worry about so many things and not knowing if tomorrow I will be crying over the most minimal thing or if I will be in pain and not want to get up doesn't help. I feel I have lost alot of the spontaneity in my life. And when I do, do something spontaneous it always involves my eating gluten and being sick the next couple of days.Yeah, not the best but I'm working on it. Celiac entails so many different symptoms that it overwhelms me at times. We are all on this ride together so just hang on. That's what I tell myself as of two days ago. It's working so far when I no longer believe it I 'll look for something new to get me through. Don't let go.-Jenny

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Thanks Jenny.

Sometimes it's hard to know when it's the fatigue making me not want to do things and when it's depression, ya know?

It's been 11 weeks now and I feel like why am I not just full of energy and doing great? Even though I know that it can take longer than that. I've had this my whole life undiagnosed, so I have to remember that healing will take time.

{sigh} I want to live life, really live it. Go bike riding again and get out of the house on the weekend, not just lay around all day for 2 days. I've been missing church constantly because I don't feel well enough to go, like today.

My husband and I are trying to get a good schedule going because he gets home late and our kids have been up super late which is making us crazy. I had a melt down when we sat down to figure it out because so much rests on my shoulders with him being gone until 7 p.m. or later and I can't know from day to day if I'll feel well enough to do everything I need to do to keep the kids on track, get dinner ready on time, etc. I want to have a good schedule and rhythm to our day, but sometimes in the morning I just feel like crap and all my "planning" goes out the window.

In the afternoon when my 2 year old is napping and my 5 year old is having some quiet time, I want to get all sorts of stuff done, but generally I am just too darn tired so I nap too, and then the whole afternoon night schedule gets out of whack.

It makes me not even want to try to plan because then I constantly fail and well... it makes me feel like a failure as a mother and wife and as a person.

Heather

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I've missed doing lots of things I would otherwise have been doing over the years too. Mostly due to not felling well, being tired, out of it, grouchy and on and on with the like. Actually my first 2 years gluten-free I felt much better but still had plenty of problems. It wasn't until this year I started feeling really well and have some energy, after cutting out soy. I am even putting on a little weight, so I guess there is something working better in my gut.

My advice is to hang in there and be patient with yourself, and give it time. Maybe find some less strenuous activities to fill your time. I like reading the bible and praying about it too. Our lives have changed but they haven't ended. We still got some kicking around to do!

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I hear you! Living with an auto-immune illness can be tough emotionally. I think the unpredictability is worse than any of the pain and discomfort because it makes planning things tough. I've had RA most of my life (and likely celiac too) and the unpredictability of it can still put me in the dumps now and then. In a nutshell - it sucks. I deal with it pretty well 98% of the time but that other 2% just rips me up. There will be good days and bad days. What I have found is that I tend to enjoy and appreciate the good days when I have them and not let the bad days bother me too much. I tell myself they'll pass, it will be better tomorrow (or the next day, or next week). Like right now for example. My mind wants to go go go and my body wants to stay put. Some days they're just not in sync! I work full time so the weekends I need to rest and get my errands and housework done. 2 days just never seems enough to accomplish both. I will tell you though that after 8 months of being gluten-free/sf I have experienced a boost in energy. It's not constant but it's there. When it strikes I take advantage of it. Hang in there, it does get better!

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I was on a big roller coaster emotionally when I first went gluten free. It didn't help that I frequently glutened myself. It seems like gluten has a strong impact on the emotions. I spent a lot of time feeling like life with this condition was just too difficult and I might as well end it all. Now I recognize that it wasn't that life is so hard with this condition, it was that my brain was fried by gluten. Now it takes a pretty strong glutening to get me suicidal, and even then I can tell myself that it is just the gluten and will go away soon. Take my word for it and tell yourself that too. When your brain heals it will all go away and life will seem so much better.

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I've missed doing lots of things I would otherwise have been doing over the years too. Mostly due to not felling well, being tired, out of it, grouchy and on and on with the like. Actually my first 2 years gluten-free I felt much better but still had plenty of problems. It wasn't until this year I started feeling really well and have some energy, after cutting out soy. I am even putting on a little weight, so I guess there is something working better in my gut.

My advice is to hang in there and be patient with yourself, and give it time. Maybe find some less strenuous activities to fill your time. I like reading the bible and praying about it too. Our lives have changed but they haven't ended. We still got some kicking around to do!

I haven't been praying enough about it either, which then makes me feel like a failure. But I know that's dumb because God doesn't see me that way.

I'm going to make a list of prayers and tape them on the bathroom mirror so I don't forget. I get caught up in my pity party, or I've been escaping by reading novels, watching movies or going online, which is helpful, but not when it gets in the way of doing things that are going to help me past this.

I am so grateful for all of you who can understand and you "get it." It's nice to come here and be able to just say "Hey I'm broken right now" and have people who come alongside and say "Yeah me too." or "I was broken and it does get better."

I have a very supportive husband, but I know it's hard on him to have to hold us all up right now. I told him yesterday that he needs to think of me as the damsel in distress. I'm in that tower and I need to be rescued. Usually I'm the fighter, the warrior, but not right now. He's up the challenge, but he's tired too.

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Heather,

You need to give yourself a break. Let the house get dirty and let the kids eat PB&J if that's what it takes for you to get some rest and recover. I finally feel like myself again, but it's been 8 months. When your body says rest, just rest. You'll get your old self back, I promise :D But don't put too much pressure on yourself right now. Remember you were sick for 40 years. It might take more than a couple of months to sort everything out. Call me anytime if you need to vent:)

Janie

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I was really tired after first being dx'd. My ferritin level was below normal and I found out I was hypothyroid. So you are on the right track getting tested to see what the problem is. I slept a lot. It is emotionally draining too. Spontaneity (sp can't find spellcheck) was especially difficult in the beginning and for me it still is to some degree. If you are going somewhere that includes lunch time or dinner, you have to take the time to research where you can eat if you need to. Now, since I found out about Udi's bread, I sometimes will just make a sandwich. Before Udi's, I could not find one bread that I liked and was worth the calories.

You are right that it is a grieving process. I have a friend that went to a grief counselor after being dx'd. We associate food with so many good/happy times in our life. How could we not grieve that. But, just in the 2 years since I've been dx'd, it seems like there are so many more choices out there. Even with restaurants.

It takes a while for some of us to feel well, but hang in there. I saw small increments of improvement at a time and feel so much better than I did.

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When my kids were little & nothing got done in the house: My job was to tire the kids out & make sure they were alive at the end of the day. Period. Everything else done was a bonus. If Hub comes home & the kids are ready for bed (& alive) - mission accomplished. If we had grocery shopped & done a load of laundry - Bonus. Maybe look at it that way. Stuff still gets done, just not like Martha Stewart would do it. Hang in there.

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But, I am struggling emotionally. I know it's a grieving process, but it's very hard at times. The sadness over all the stuff I've lost in life because of celiac is overwhelming at times.

I think I understand how you feel. In my case, I'm still looking for a firm diagnosis, but if it's Celiac, FMS, IBD, or some combination, there is no question I have lost much of the joy of living for what should have been the most functional 30 some years of my existence because of ill health. It seems so unfair ("Life isn't fair", yeah, I know), everywhere you look, you see people, the majority of whom, just based on statistics, are capable of having nice healthy lives. Instead so many of them are walking around (or riding little carts), grossly overweight, cramming their faces with junk food and cigarettes, all washed down with a 5 gallon pail of carbonated chemicals. Yet their stomachs feel just fine. And in my case, I also have to deal with the upheaval of having been abandoned by the woman I thought was going to "be here forever", as she constantly reassured me she would, right up to the moment she left because of my health. I don't know if it's some emotional manifestation of "gluten withdrawal", or just a rational response to a pretty lousy set of circumstances, but it is very hard to take at times.

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When my kids were little & nothing got done in the house: My job was to tire the kids out & make sure they were alive at the end of the day. Period. Everything else done was a bonus. If Hub comes home & the kids are ready for bed (& alive) - mission accomplished. If we had grocery shopped & done a load of laundry - Bonus. Maybe look at it that way. Stuff still gets done, just not like Martha Stewart would do it. Hang in there.

I think I need to make that my motto. Tire the kids out and keep them alive. :lol:

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I think I need to make that my motto. Tire the kids out and keep them alive. :lol:

Maybe we could print it on t shirts. Take them to your Mothers of young children group instead of food.

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It didn't take 11 weeks for you to get as sick as your were prediagnosis and it will take some time to heal fully also. Do take it easy on yourself, do what you can do and let the rest go or hire a junior high school girl to come in for an hour or two a day to take care of some of it if you don't have freinds or family that have any time to help. It takes time so don't be to hard on yourself if your not superMom quite yet. Things will get better, the kids will survive a house that is a bit messier than you might like and playing quiet games or reading with them when your not quite up to speed yet will sit longer with them than a spotless house anyway. Use their nap time to relax and nap yourself if you need to. The body does it's best repair work when we are asleep so if you need an excuse to do so there it is.

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I think it's pretty amazing how our priorities have to change when we get diagnosed with this disease. I'm not sure about you, but I'm a control freak. I totally understand your frustrations about wanting to get everything done, but sometimes your body or your brain just isn't up for it. Its a new and different art form, learning to take care of yourself. And it's not always easy. But with time, it gets a bit easier to accept the bumps and say to yourself, I can do these few things, and I am going to have to let these few things go. But once you can get the hang of prioritizing, you will feel so much more sane, and be able to feel a bit more back on track and able to deal with life and general. Someone said earlier that you have to give yourself a break, and I second that 100%. Another thing that I found tricky but really helpful is to just be able to ask for help sometimes. You can't do everything all the time. There are probably friends and family watching you struggle, but not knowing what to do since nobody can undo our disease. Often times they will jump at the chance to do something to make your life a bit easier.

I hope you are feeling better.... :)

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It took almost a year for me to get my energy back to do the things I wanted. Now I'm able to exercise, ride my bike with the kids, play with the kids and dog, all while not having extreme fatigue and shortness of breath. How is your iron? My lingering fatigue was from my chronic low ferritin. I have raised it up some to where I'm not having symptoms, but it still is not optimal. It has made a huge difference.

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Heather,

You need to give yourself a break. Let the house get dirty and let the kids eat PB&J if that's what it takes for you to get some rest and recover. I finally feel like myself again, but it's been 8 months. When your body says rest, just rest. You'll get your old self back, I promise :D But don't put too much pressure on yourself right now. Remember you were sick for 40 years. It might take more than a couple of months to sort everything out. Call me anytime if you need to vent:)

Janie

Heather,

I agree with Janie, you are putting way too much pressure on yourself. Right now what is important is your healing and not being super mom. That day will come back. I don't have kiddos in the house anymore but do feel bad that I don't have more energy for my grandkids.

Back when my first grandchild was born 6 1/2 years ago, I went on a diet to lose weight and actually felt a bit more (not a lot) energetic. Now I figured out I felt better because I cut down on gluten and not because I weighed less. After I got to the weight I wanted, I started eating more gluten. The severe fatigue hit again but I never put two and two together. I pretty well missed out on playing with the next three grandkids when they were babies. Just had a new granddaughter born a week ago and am praying that my energy will return so I can be more active with her and the older grandkids.

If all you can do is read, watch movies and search the net, do just that. I feel strongly that you will have your energy back in no time.

Hang in there.

Jackay

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It took almost a year for me to get my energy back to do the things I wanted. Now I'm able to exercise, ride my bike with the kids, play with the kids and dog, all while not having extreme fatigue and shortness of breath. How is your iron? My lingering fatigue was from my chronic low ferritin. I have raised it up some to where I'm not having symptoms, but it still is not optimal. It has made a huge difference.

Low iron has been a big problem for me off & on for years. Now that my iron is up to almost the low end of normal, I feel so much more energy. Get some sublingual B12 that helps, too & it won't hurt you as we pee out the excess. Sublingual doesn't interfer with other vitamins in your stomach & is well absorbed.

Now that I have more energy: The kids are still alive & usually tired by the end of the day. I suppose I will have to repaint the walls I've been putting off.

Also, if you keep a good sense of humor: let the 5 year old "do his own laundry". Started at 4 with my boys. You sit & direct - he sorts, throws in wash, then in dryer, "folds" socks & underwear, towels, etc. Its well worth the effort because by 10 they can be responsible for their own laundry.

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I had the terrible adjustment of going from being a human doing to becoming a human being. Before my diagnosis there were days where all I could do was to sit and stare the ceiling, or the TV or the computer screen because I could barely move anymore. For someone who was so invested in what I did as opposed to who I was, this was the absolute low point of my life. I wanted to get up and do things again. Here I am a little past a year into gluten-free and I just got back from driving to Minneapolis for a major audition... something I thought I would never do again.... only it was different this time. There was a sense of calm in the whole process...

From the poetry of Christopher Smart:

For I will consider my Cat Jeoffry.

For he is the servant of the Living God, Duly and daily serving him.

For at the first glance of the glory of God in the East He worships in his way.

For this is done by wreathing his body Seven times round with elegant quickness.

For he knows that God is his saviour.

For God has blessed him In the variety of his movements.

For there is nothing sweeter Than his peace when at rest.

For I am possessed of a cat, Surpassing in beauty, From whom I take occasion

To bless Almighty God.

It is simply being what it is supposed to be...have you ever heard a cat apologize for laying right down in a sunbeam and taking a nap. Its glory is in not caring at all what others may expect of it..

OK.. so maybe I'm off my rocker a bit but two years ago I would have been so concerned with not appearing to be doing enough. Now, I listen to what my body needs to heal and if anyone doesn't understand, that is no longer my problem. Not saying that it doesn't still create some conflict but I notice that it is no longer me that gets upset in that circumstance. Being there for your children will be an ever increasing possibility as you take care of yourself (yes, perhaps becoming a bit selfish in a way) thus healing and increasing the possibility of being there for them for many years. Two years ago I wasn't sure I was going to be around to see my daughter graduate, or my youngest son. Tomorrow is no guarantee for any of us but I do know that I now have much more hope that I may yet see and experience many more days in the life of my family.

Peace to you and strength for you as you heal.

CS

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It took me two years to get on track after 36 years of not being on track with anything at all. All you can do is get plenty of rest and only do what absolutely needs to be done. The rest can wait.

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I think it helps to think what would you tell a friend who came to you with the same complaint. Would you tell her to suck it up loser? :lol: No, you'd tell her to take extra care of herself and forget about doing everything. I think you should take your own good advice.

You'll feel better. Prayer IS key for me!

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Sorry you are feeling low...but glad you are reaching out for some good energy from the group.

If you aren't already doing it, you can start clearing your life of tolerations ad take back the time and energy you need to manage your life.

Tolerations are small and seemingly unimportant things that take our energy and attention. These things are so small, that instead of fixing them, we just tolerate them. But these small things add up to quite a bit of wasted time and effort on a daily basis. Sometimes you can give yourself back an extra 5-10 hours a week just by fixing and getting rid of those tolerations. An example: your shoe lace broke on your running shoes, and instead of getting new ones, you just spend an extra 45 seconds fiddling with that shoe lace every time you put on the shoe. Other common tolerations: cluttered food cupboards where it is impossible to find anything, cluttered clothing closets, a kitchen drawer that sticks, burnt out lightbulb, small rugs that get underfoot, fridge door cluttered with old condiment jars and bottles, not having enough cuttlery or good knives for various tasks (and sharpeners), using a too small cutting board, too many remotes in the livingroom, not having a self-cleaning oven, needing a second dedicated gluten-free toaster oven so you don't have to spend time wrapping your food in tin foil, too many colored sheets and towels in the house requiring several seperate loads of laundry (toss them all and switch everything to white), dragging bottled water in the house instead of having a reverse osmosis system, keeping high maintenance pets (like rabbits, gerbils, big aquariums),

Tolerations clutter up your life and make you frazzled. They exist in the home, in the kitchen, in the car, in the office, everywhere. You can google the term to find out how to start clearing them out. The first thing to do is make a list and keep it handy for about a week. Everytime you encounter a toleration, write it down. At the end of the week, start prioritizing them, and resolve to get rid of them for good.

Hope that helps a wee bit!

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I know what you're going through, and in fact you posted in support of me not too long ago.

My problems are now finally clearing up, and for the emotional part you need to just let it run its course. Don't stay strong (as in tighten up or suppress), don't lash out, and only watch your frustrations. They really can't do anything. You already know that you are exhausted and you know it's futile to make yourself even more exhausted by complaining about being exhausted, and then complaining about complaining.

Also, I renounced the church long ago so if I come off as a jerk I don't mean it. But don't let god interfere with this. You are trying to recover and there is no point in being upset that you can't pray at this time. Why would HE be mad? If he's doing anything he's probably cheering you on and seeing your course of suffering as a prayer in itself.

Lastly the only recommendations I can make are coconut water and exercise. Coconut water is VERY high in electrolytes and can actually be used in human blood transfusions when there is none available. This stuff always helps when I'm feeling woozy and with not enough blood. Exercise should be mandatory even if you think it's impossible. Yet I've found that unless I'm constantly dozing, or actually ill with something, that neglecting exercise has a snowball effect where energy keeps going away more and more. Even if it's something easy like a slow 30 minute drudge around the neighborhood at least you did something. Failing that, you can at least do some yogic pranyamas to get more oxygen into your body. Humans seem to have to relearn how do digest calories properly so as to give energy. At least in my experience, because when sitting around for too many days food seems to do nothing but make me feel heavy and not even coffee by the liter will perk me up.

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Hi surfgirl. I have a story I think may help you cope with the dragging recovery. Some time ago a friend of mine sent me this story, and she has her own long history of health problems. She beat breast cancer with a double mastectomy 20 years ago, and now has MS. I can't copy paste, so here's a link to the spoon story: http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

Now when we try to get together, if either of us is ill or out of spoons, that's all we have to say and we understand. My mother too. If any one of us just says, "Sorry, I'm out of spoons." Then we all get it and that's really an awesome thing.

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Wow Bunny! That was very powerful.

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