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I'm closing in on one year of following Autoimmune Protocol and passed my one year gluten free mark almost two weeks ago. I've been extremely dedicated. Extremely careful. Short of enrolling in holistic nutrition courses, I've spent every available moment learning everything I can about healing. It's gone very well . . . until recently. I think I may be dealing with the dreaded set back.
What starts this terrible spiral? Why does autoimmunity work this way? I've worked so diligently at this mission, how did I end up here again? Honestly . . . I'm scared.
Set backs, flares, whatever you call it, it is scary. I've felt it coming on bit by bit for about a month and then late last week I couldn't ignore it anymore. It's a helpless feeling. It's like sliding slowly into a dark spot and not being able to stop the slide. Something in my body is not working properly. It's off.
Not off in the way a healthy person experiences it though. It isn't like a Saturday morning after a Friday night on the town. It isn't like an extra hard work out that leaves you sore. It's not like I've put in a few late nights at the office and now feel the extra drag. It's like winding down for no apparent reason.
My most frequent scary thoughts go like this, "Could it be the start of another autoimmune?" And if that is case, I start to want to scream at the universe, "Are you EFFING kidding me!?" I'm not always very graceful in dealing with this stuff.
"How long will this last? Am I doing enough to minimize it? Should I tell anyone?"
"Did I get glutened?" And if that is the case, I go into an internal tirade against myself about why I wasn't more careful and also apparently, all knowing, about where secret gluten could linger.
"Am I taking bad supplements or not enough supplements? Is this hormonal? And further more, is it even fair that a woman's cyclic hormones should make dealing with autoimmunity that much harder?"
"Am I not resting enough? Should I exercise more? Or did I push too hard? Am I working too hard? Am I dealing with stress poorly? Is it even possible to eliminate more stress?" And that last question is really important, 'cause seriously, did you wake up on planet Earth today? Could the place be anymore flipping stressful? Speaking of waking up, when I'm dealing with a set back, every darn morning I wake up thinking, "Is it better? Am I better today? Will feeling decent last until after breakfast? Will it come on by lunch? Will I be wrecked again by dinner?"
I traveled recently, so I think, "Maybe that was the last straw?" And if that is the case, I am overwhelmed by depression. I've traveled all over the world. Being reduced to short, simple trips and still being so wiped out by them makes me so sad. This thing that I love might be difficult from here on and it doesn't seem fair.
And the worst question of all for me, "Should I even try to see the doctor?" This thought alone actually makes me feel even more hopeless and depressed. I fear the possibility of multiple appointments and tests and being told, "Nothing is wrong. You worry too much. Let me prescribe you some anti-anxiety medication."
Set backs are different for every AIer. Mine feels like a racy, jittery inside. A floating, tingly feeling to my head that comes and goes. Trouble with sleep. Occasional moments where I just can't process information. A tight throat and sore tongue, it feels a little tough to swallow. The return of tummy pains. And I'm tired, but I feel that I must will myself through any fatigue. Truthfully, I'm afraid to stop too long. The absolute worst is the fear and anxiety. Sometimes the only thing that helps is to tell my husband I am scared and let him hold me.
Hopefully I will put the pieces of the puzzle together and get passed this set back quickly. In the mean time, I try very hard to not be scared . . . it frees up alot of time to be brave.
What's a set back like for you? Do you have special tips for dealing with one?
My heart ached when I read this post. I've only been following your blog for a few weeks but I've learned and been inspired by your posts. I deal with Hashimoto's Thyroditis. I was diagnosed two years ago and have walked the slow road to healing, but it has been a good one where I've learned a lot about myself and my priorities. When I have a setback I find it helpful to think back to when I was first diagnosed and how I felt then - crummy, hopeless, and wondering if I would ever feel like "me" again. And then I realize how far I've come and that if I've made it through other setbacks - I can make it through this one. I also think "After I've tried my best that's all I can do" and then I try to enjoy the present as much as I can with a hope that this is a cycle and it won't last forever. My thoughts are with you - you can do this!
ReplyDeleteWhen it happens to me, I cry on my husband's shoulder, but I also meditate. It's the one thing that stops the negative thought/fear spiral. I don't know about you, but my emotions can actually cause flares. I did the AI protocol as an elimination diet for 2 months, and when it was time to start reintroducing new foods, I started to brace myself for the pain that would inevitably come when I discovered one was a trigger. But get this - that fear, that bracing - CAUSED a flare BEFORE I even introduced a new food. I was pissed off, but also glad it happened, because I made it through the flare and realized I would the next time food caused it, too. It also reminded me that flares can have lots of causes, and emotions are strong! So, I say meditate, my friend. If you've never done it before, don't be intimidated. There are lots of ways to reach replace that tight anxious feeling with a peaceful one. Do it every day, or even a couple of times a day, if needed. I wrote a blog article with 10 ways to get started: http://www.phoenixhelix.com/2013/02/06/meditation-its-easier-than-you-think/
ReplyDeleteThanks for the link on Meditation.
Delete- I'm new to this blog. Also Hashimotos
P.S. Regarding the travel, try to remember that just because you can't do something now, doesn't mean forever. I have to remind myself of this, too. For me, I miss my strength and the athletic activities I used to do. I worry about forever, but then remind myself of how far I've come (like Brittany said). We're not done yet!
ReplyDeleteI read this post at just the right time (just got your link from Paleo Mom). I am going through a flare up 12 days into starting AIP. It makes me so mad. I think why oh why am I working my tail off and passing up the foods I want and get paid back with a flare up?!? One thing I've learned is that I need a day to be sad and cry. It makes me worse if I try to buck up right away and fake my happiness. My kids are very sweet and tell me how beautiful I am and they hold my hand and pray for me. I have psoriasis and after 1 year of being Paleo (4 years of gluten and dairy free) I've got some kind of skin thing going on on my face...it's hard to wake up every morning and look in the mirror, as if it wasn't bad enough before. Not only that, but I'm skinny so I have to deal with people's comments about that. I always want to yell IF YOU HAD THE DIET I HAVE YOU WOULD BE SKINNY TOO! Anyways, I pray literally all day every day when I have a flare up. It's the only way to get through the day. I don't really feel worse physically, just depressed that it's happening again. The depression makes me not want to do anything and that makes me feel like a bad mom. One thing I've learned to when I'm pleading with God to get me through and to heal me, I have to remember to thank Him for the good things too. If I think about where I started 4 years ago....oh man, I literally thought I was going to die and no doctor would take the time to figure out what was wrong with me. They gave me Zoloft and Xanax and sent me on my way. I was having such bad anxiety attacks, I ended up in the emergency room. It was everything I had in me just to make it through the day (and it took a xanax every 3 hours to get me through). I thank God that I finally found a doctor that started me on the road to progress and I'm thankful for blogs like this and communities where we can all support each other. For the most part, I live a "normal" life, I just look like a freak. Oh, and I call my mom and/or sister and just cry. :( I hope your flare goes away soon.
ReplyDeleteThank you so much to all of you for reading. Christie, hang in there! You are so sweet to wish me well in dealing w/ a set back & I wish you the same. BTW, I am a skinny lady too. I get you girl!
ReplyDeleteI have small flare ups constantly. With an infant and toddler I don't get to pamper myself much, especially since my toddler is already showing strong autoimmune symptoms, but I try to sleep more. I don't get much sleep since neither are even close to sleeping through the night (at all!) so I nap. Took two today! Won't be sleeping much tonight. Toddler has the stomach bug and infant has a cold. Both are teething! Ugh!
ReplyDeleteI'm trying to not expect to feel good regularly too. I'm working on it, but trying to remind myself it will be years before I get a good handle on things and progress is slow. It doesn't mean I will be here forever! Though I usually feel just like you wrote.
Hi, I was just wondering if you've done a comprehensive post about avoiding hidden sources of gluten, cross contamination, etc.? Maybe I haven't come across it yet. I find it so confusing and overwhelming (am I really supposed to throw out all my plastic bowls that might have scratches harboring gluten? Can my parents still cook for me if their kitchen isn't 100% gluten free? What is really required to ENSURE a gluten free meal if not made in your own kitchen? Etc.) Thank you again for all you do! Hope you are continuing to recover.
ReplyDeleteLindsey, I don't have a comprehensive post about avoiding hidden gluten or cross-contamination. Try not to feel overwhelmed though. It is totally doable. I will definitely work on a post about this topic, thanks for suggestion & keep checking back for some advice on how to do this. Thanks for reading!!
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