I'm on warm milk and laxatives. Cherry-flavored antacids.
March 11, 2014 5:50 AM   Subscribe

I've had health issues my entire life. I'm approaching my mid twenties and it's time to accept the fact that I'll likely never be 100% healthy. How do I do this?

Note: It will be awhile before I can see my therapist; I'm catching up on my payments.

I have exhaustion/insomnia/nausea issues that make it difficult to live a "normal" day to day life. I tend to descend into a state of exhaustion/weakness that gradually decreases my functioning until I do almost nothing except sleep.

Nausea/stomach pain is a daily thing for me; I'm pain free so infrequently that when it's not hurting I get anxious about when it's going to start again.

I've been to numerous doctors who can't figure out the nausea thing - antacids and other forms of self-medication are my best friends. The exhaustion situation appears more hopeful, and I'm working on consistency with addressing that.

I want to get my shit together in 2014. I can't cope with the fact that this probably means accepting that I'll never have a "normal" life, and may not be able to have a "normal" job either, depending on how this attempt at managing it works. I honestly cried while typing this; I don't want being a sickly person to be my reality.

When I wake up in the morning and need to take 8 vitamins, which hurt my stomach (or take them with food, which will also hurt my stomach) for a chance at having energy, and am able to bond with my 70 year old Step Dad and 81 year old Grandmother over which antacids are best, I feel like an elderly person instead of a 23 year old woman. Then at night I become a zombie who's too tired to function but can't sleep.

Let's not mention the process of figuring out which meds work, which doses, and what side effects are caused by what meds and is my mood swing today because of this med or this med's interaction with this other med or withdrawing from that med or do I genuinely have a reason to feel this way or...

Well, you have the picture.

I want to accept that this is my reality, and be able to love my body, myself and my life anyway.
posted by Autumn to Health & Fitness (21 answers total) 9 users marked this as a favorite
Best answer: This is NOT your reality. You are sick and OTC meds are masking the problem, not helping.

You need to get to a doctor, a specialist or a team of specialists and have every test known to man to get to the bottom of this.

If you've been to a GP, you need to push for a specialist and a specific diagnosis!

What exactly has been ruled out? Thyroid (my first guess), Ulcer, Celiac Disease, RA?

Have you done an elimination diet? Were there any foods in particular that affected you?

This is not anyone's normal. If you had a diagnosis, then I'd say, "okay, work with that." But you don't. Don't accept this as normal or your reality until you have had it proven to you that it IS normal for you.

Now make an appointment with a gastro-enterologist and Godspeed!
posted by Ruthless Bunny at 6:01 AM on March 11, 2014 [34 favorites]

I agree with ruthless bunny 100%. A self diagnosis is no diagnosis. Stop taking the vitamins. Those are causing nausea. Forget your gp and find a GI guy asap to start doing some serious tests. Try to limit or stop altogether the antacids and other OTC tummy remedies those are the worst kind of issue masking self fulfilling prophecy.

Good luck!
posted by chasles at 6:10 AM on March 11, 2014 [4 favorites]

If you are female, chances are you've gotten the "it's psychological" blow-off. Don't accept this. It sucks having to be your own advocate, but this is a case where you have to be your own advocate and squeaky wheel.

Tell a gastroenterologist (if you can see one without a PCP gatekeeper) or your primary care doc (if you need to go through them first) what you've told us. You're in constant, debilitating pain. You run out of energy. You go through periods where you're so exhausted you sleep all the time. (BTW, I know people will tell you to "change doctors" if your PCP is not up to snuff, and you can try to do that, but I know that if there's a shortage of PCPs it's not an easy thing to find a good doc who is taking new patients.) Write down a detailed list of your symptoms and tell your doctor what you have told us. Doctors tend to respond better to a specific detailing of symptoms rather than "I hurt" or "I don't feel well." Push as hard as you can for a physical diagnosis. If you have a family member or close friend who is willing to go with you to the doctor's and advocate for you, that might help as well. You are suffering, damn it, and you will camp out in the doctor's office, if necessary, in order to get that suffering alleviated!

My dad suffered with ulcers and "a delicate stomach" for years, back in the era when stomach problems were thought to be psychological and caused by stress. Everything he ate made his tummy ache. It turned out to be a stomach bacteria causing the ulcers and digestive issues, and a course of antibiotics and Prilosec cured him and made his quality of life so much better. (Though he never became an adventurous eater!)
posted by Rosie M. Banks at 6:26 AM on March 11, 2014 [9 favorites]

Well, first off, I'd personally try to come at this from a point of (a) This sucks, it really really sucks, but (b) I'm not going to give up.

You need role models. I like The Frogman. He has been dealt a really shitty hand, health-wise, but he still makes people laugh. He writes about his health issues and how difficult they can be to cope with. He also posts pictures of kittens, funny GIFs, and other things that can help you forget how shitty you're feeling.

I'm also going to agree with the folks who are suggesting trying more things, though.

Sometimes science needs a while to catch up with the diagnosis. Sometimes you need just the right test at just the right time. It sucks, it really does, I'm not going to lie. But I wouldn't accept this as your reality forever.

Some suggestions, from someone who's had some of these symptoms. You may have tried some of these already, I'm sure. But keep trying. You don't know what will work until it does.

-Thyroid test FOR SURE.
-More doctors. Be very specific about your symptoms and how they are affecting your life. If they don't find the diagnosis, don't assume there isn't one -- keep following up.
-Peppermint oil can help with nausea without lowering stomach pH.
-Probiotics. Try MANY kinds, some may work and some may not. Include some live probiotics in there (kombacha, live culture yoghurt, etc.)
-Working with someone qualified (nutritionist or allergist) to do an elimination diet.
-Keeping a food and symptoms diary.
-Light exercise. Walking, low-exertion yoga.
-Reading funny things, watching funny TV shows. If you're getting anxious about when the stomach pain is going to come back, distract yourself!
-Anxiety/depression meds, if you aren't on them already (they have shown efficacy in IBS at levels below those that are typically used for anxiety/depression).
-Improved sleep hygiene. This is a whole thing of itself.
-I find pills make me much more nauseous in the morning -- move them to lunchtime, maybe, or any other time when you're eating already.
posted by pie ninja at 6:29 AM on March 11, 2014 [2 favorites]

Okay, the advice above is great and I hope you take it. But to address your actual question of coming to terms with consistently feeling unwell, I have two thoughts:

(1) What is your support system like? Do you have good friend(s)? Are you close with your family? I ask because I think everyone needs a strong support system, and that goes double for someone will health issues. If you don't feel close to anyone else, I would try to focus on forging strong relationships. (I know - easier said than done. Perhaps something to focus on in therapy once you can go back.)

(2) Do you have hobbies? Is there something, anything that makes you feel good/happy? I know your medical issues probably limit your options, but even something like going to the movies, reading short stories, or sitting in the park can help. If you already know that This Thing is, do more of it - schedule time for it. If you don't have a Thing like that yet, seek it out. I know it's not easy, but it is important.
posted by schroedingersgirl at 6:32 AM on March 11, 2014 [2 favorites]

Also, this may not be your jam, but I always feel better when I'm getting some natural sunlight and fresh air. Are your blinds/curtains open during the day? Do you open the windows when the weather permits? It's a small thing, but it always puts me in a better mood. Dark spaces without natural light bum me out.
posted by schroedingersgirl at 6:34 AM on March 11, 2014 [3 favorites]

Hi, I'm sorry, this sucks. I know, I've been there. Chronic unending nausea leading to loss of apetite leading to weight loss, fatigue, depression and on and on in a downward spiral. I've been there for sure and it sucks. I did what the above said and talked to my doctor and then GI specialists and ear, nose, and throat guys (yeah, I had throat issues as well due to years of reflux damage). I got onto some medications for my various stomach ailments and depression (interestingly some work on both). OTC meds can help some with the pain, but you need real treatment from a doctor. They may put you on a regimen that includes some OTC. Anyway, there is hope, there is treatment, hang in there.
posted by The 10th Regiment of Foot at 6:37 AM on March 11, 2014 [2 favorites]

I have something called a Chiari Malformation. It impacts my daily life in that I cannot run, jump, lift heavy things, tilt my head up, or even laugh or cough too hard without getting a headache. I've been symptomatic since I was 12. I used to get terrible, debilitating headaches every day, multiple times a day, but thankfully I eventually found drugs that help control those symptoms. I used to fall over if I closed my eyes while standing. The drugs help that. I still have balance problems (fell down the stairs of my apartment last week, oh yeah) but they're nowhere near as bad. My hands have tremors. I used to want to be a surgeon but surgeons need to use their hands pretty capably, and I realized when I was 20 and having hand tremors and pain that that could never be me. Sometimes my fingers and toes go numb. Sometimes my cheeks go numb, which is a totally weird sensation. This is all "normal" for me, and it's much, much better now that I'm on the right drugs, but it's still present. The drugs that enable me to actually have a livable life give me brain fog and make me pee constantly, but it's better than falling over when I shampoo, so hey. One day I might (probably) have to get brain surgery that, in addition to maybe not fixing the problem and maybe even making it worse, will leave an 8 inch scar down the back of my neck. Yaaaaay for me.


Ruthless Bunny is absolutely a hundred million billion % right about this not being the rest of your life for you necessarily. You need to find a specialist. You may always be a sick person, you may always have chronic pain, but you have GOT to keep trying. Your personal normal may never be perfect, but it can be better. You have to be proactive.

The one silver lining to all this is that I know I'll never have the same mental hurdles as my peers when I get "old". I'm 28 now, so a lot of my friends are hitting that spot in their lives where their metabolism slows down and they realize they don't bounce back from injuries like they used to, or they have to do things like worry about their cholesterol. But me? I've been sick more than half of my life. I don't have any of that sense of losing what I once had because I've never had it. Like, oh, you can't play a game of pick-up basketball like you used to? Oh, your tired now after just a few minutes of running? Join the club. I know that's not the most cheerful thing in the world, but not having that existential sense of despair when something doesn't go right for me IS something I've noticed. I think it's that I've learned to roll with the punches better than folks who have had an easier go of it than me.

But anyway, seriously, that thing that Ruthless Bunny said about not giving up hope and finding a specialist to help you with your health issues. That is forreals. I can't even imagine going back to my life before I found my specialist and got on the good drugs. You have to keep trying.

Good luck.
posted by phunniemee at 7:19 AM on March 11, 2014 [8 favorites]

When I wake up in the morning and need to take 8 vitamins

Unless you have been specifically told to do this by a physician, it is almost certainly part of the problem, not part of the solution. Unless you have a particular diagnosis of a particular condition which requires supplementation of specific vitamins, they aren't doing you a lick of good.

This does not sound like a therapy problem. This sounds like a medical problem. Go to the doctor. If the first one doesn't get you anywhere, go to another one.
posted by valkyryn at 7:43 AM on March 11, 2014 [13 favorites]

Yes, please stop taking those "8 vitamins" every morning and re-engage with medical care. You shouldn't have to feel this way!

It sounds like you may be suffering from depression, among other issues. Why not see if you can get that addressed, as a first step? Go see your PCP -- find a new one, perhaps a board-certified internist, if you haven't made much progress with your current doc. Be well and good luck!
posted by killdevil at 8:07 AM on March 11, 2014 [1 favorite]

Get allergy testing. Or if you can't afford it, at the very least do an elimination diet as suggested above. Your symptoms sound like me before I found out I'm allergic to most of what I was eating.
posted by MexicanYenta at 8:16 AM on March 11, 2014

10th Regiment of Foot noted that they saw an ear, nose and throat (ENT) doc. Add ENT to your list of specialists to see. Chronic sinus problems can cause unrelenting fatigue, and chronic postnasal drip can cause stomach upset and vomiting. Get all your systems checked out! Thyroid, sinuses, stomach, everything!

Vitamins: if you are taking them on an empty stomach, that might be triggering the vomiting and upset stomach. If I take vitamins on an empty stomach, I get nauseated and throw up. Take your vitamins with food. (It doesn't have to be a big hearty meal, just a meal or at least a snack.)
posted by Rosie M. Banks at 8:24 AM on March 11, 2014 [1 favorite]

I should add that my years of trying to ignore stomach issues was actually the cause of my terrible sinus problems which exacerbated the fatigue issues and made me feel, yep, sick to my stomach. I luckily found good doctors who treated the digestive system problems first and then worked backwards to repair the other issues that were largely caused by trying to ignore and self medicate the digestive problems including throat surgery. After a lifetime of being chronically underweight, constant allergy issues, physical weakness and exhaustion, lack of sleep, and depression (oh, yeah, throw in braces and teenage hormones and you can guess that high school was a really great time for me) mostly through medication alone I live a pretty normal life and eat/sleep like a normal human. For me I was constantly starving and simultaneously feeling like I was full to the point of barfing after three bites from a cracker. Occasionally I'd binge eat and push through the nausea. In college I self medicated my way through life (munchies were a good thing) but that certainly didn't help the allergy, sleep, or depression issues and by the time I graduated my esophagus, trachea, and larnyx were wrecked. After a few years I couldn't keep my teaching job because I could no longer speak lwithout severe pain. Sleep became increasingly difficult. Eating became more and more of a chore, which I made up for by taking vitamins, which caused more stomach pain, and so on and so on until I finally said enough and went to a doctor about my throat pain and her spending time enough to listen and ask questions saved my life.
posted by The 10th Regiment of Foot at 8:44 AM on March 11, 2014 [1 favorite]

I absolutely agree with everyone who has said that this doesn't necessarily have to be your reality. See specialists, specifically a gastroenterologist, an endocrinologist, and an ENT. If they don't find anything, go to another specialist until you get an answer. I say this because I was exactly like you and it took me 16+ years of being the person with the sensitive stomach who was always sick and always exhausted before I figured out what my issues were. Now I feel great and can't remember the last time I was nauseous or had heartburn and I have energy to spare. I won't hash out the entirety of my issues & diagnosis, but feel free to MeMail me if you want details.

That said, while you are seeking out specialists and working on getting better, try to take a moment each day to focus on loving yourself. Health problems, especially being in constant pain and discomfort, are really exhausting and can take a serious toll on your mental well-being. Do something nice for yourself every day, whether it be taking a walk in a park that you love, reading a chapter in that book you've been meaning to finish, indulging in a guilty pleasure TV show, whatever. You can get through this, and you can feel better.
posted by bedhead at 9:16 AM on March 11, 2014

You should definitely take the advice of everyone above who is saying you need to continue to pursue all available medical avenues. If one doctor brushes you off, find someone else. Try out different specialists. Be an advocate for yourself. (And yeah, maybe lay off the vitamins unless you've been specifically directed to take them by a medical professional.)

Now, even if you get a diagnosis and a better treatment plan, you may still be left with some limitations that you'll have to learn to live with. I recommend reading up about radical acceptance. The basic idea behind it is that suffering is caused by the refusal to accept painful circumstances, so we can reduce our suffering by accepting--rather than fighting--our reality, especially in situations that are out of our control.

Radical acceptance is taught as a part of the distress tolerance curriculum in Dialectical Behavior Therapy. It sounds like you're not in a position to pursue group therapy at the moment, but once you get into a better financial situation, you might look into joining a DBT group. It was originally developed for patients with borderline personality disorder, but it's now applied much more broadly.

Lastly, this isn't everyone's cup of tea, but you might try making a list of things you are grateful for (friends, family, etc), including what you're still capable of doing even with your physical limitations. If you do try this, I recommend doing it on one of your "better" days. If you're already in a really bad place, forcing yourself to practice gratitude can just feel like adding insult to injury.

Good luck!
posted by litera scripta manet at 9:35 AM on March 11, 2014 [1 favorite]

Walk, every day, at least a little bit, and try to do a little bit more every day. One thing about energy is that it can turn into a huge feedback loop--you stop doing stuff because you're exhausted and pretty soon you have the energy for even less. But if you walk half a block, then a block, then around the block, it all seems incredibly silly at first but over time your body starts learning how to exert itself again. Brisk cardio (like, enough to get winded, not necessarily any particular speed) is also really, really good for depression and anxiety. And it can promote better digestion. So, in essence, you do one hard thing, but it makes everything else easier. It takes patience because it won't make you feel better right away, but it's worth it. What I've told myself a lot--well, if I'm hurting and worn out now, already, it's not like more sitting is going to make me feel better, so I might as well move. I've been able to work up to jogging, but you don't have to, just try to do a little more than you are now, and then a little more, and so on.
posted by Sequence at 9:50 AM on March 11, 2014 [1 favorite]

I was severely debilitated with Chronic Fatigue Syndrome for about four years (though it took about 2 years for the diagnosis), so some random thoughts about being sick:
  • nth all the advice to keep pushing on the medical side. But also recognize that this is hard work, especially when you are sick. In a way it's your job, so try to do it smart, and give yourself breaks when you need it.
  • If you have someone you trust, take them with you to all your dr's appointments. I didn't start doing this until I had a very unpleasant interaction with a very unprofessional doctor. Initially I did it out of fear, but even after I found my excellent, supportive, helpful and wonderful doctor who I trust completely, my husband continued to come with me because a) he could improve the accuracy of my description of symptoms/changes/etc., b) he could help me remember details of what the Dr. said that I may have missed and c) it was good for me to have someone else's take on the more subtle aspects of the interaction (implications of optimism, or caution, long shot, etc.). I fully intend to bring a "friend" to any future serious or non-straightforward dr's appointments I may need in my life. It made a huge difference.
  • Try keeping track of treatments and your major symptoms, because in my experience memory is incredibly unreliable for identifying some correlations. Especially when you are sick and sleep deprived. This can be very daunting, but some form of tracking can help tremendously in evaluating efficacy of a medicine, elimination diet, supplement, or any change. Try and create a tracking method that appeals to you and that is maintainable. I went uber excel geeky with a spreadsheet to track a detailed list of my activities, characteristics of my sleep, pedometer reading, specific symptoms, etc. etc. But that's because I LIKE data. Most of the details were not that useful in the end. What was most useful was a general number representing my functionality each day, a number representing the severity of symptoms combined with specifics of what the interventions I was trying. This could be captured with just two data points plus tracking what you are trying. And if it appeals, a little journal narrative for each day might be useful on occasion. There are also apps that can help make some of the data collection easier.
  • Try, as much as possible, to isolate changes in your treatment. Rather that adding a new med, changing your diet and trying a new supplement all at the same time. Space these out so you have a better chance of identifying the actual effect of each individually. This can help reduce your overall number of treatments because you'll have a better idea of what is actually working and what doesn't.
  • But sometimes things work in synergy, so you know, just be aware. Sorry I know this is a crappy thing to say : (
  • Sometimes it's good to start from as close to a clean slate as possible. Maybe stop all "treatments" for a few weeks, before starting to add individual treatments.
  • Keep looking for the source of the cause of your symptoms, but don't underestimate the value of sometimes treating the symptoms themselves. For example, it may be possible that prescription sleep medication could help with your insomnia which could help with your overall level of functioning. This could give you more energy and mental stamina to keep searching for the root cause of your issues. This is where approaching treatments from an experimental mindset (trying to isolate variables) and keeping some kind of log is important, because you also need to be fairly confident that treating a symptom doesn't exacerbate other (possibly) more primary symptoms.
  • Be kind to yourself. This sucks. Seriously. You are doing a damn hard job, so give yourself credit for that and do nice things for yourself (like bedhead said)
I want to accept that this is my reality, and be able to love my body, myself and my life anyway.

This is a wonderful goal I think, because right now, in this moment, this is your reality. That is not to say it always will be, but I think working to accept your present state can free up energy to devote to trying to change it. I'm not sure that makes sense. I found the buddhist ideas of suffering and non-attachment (I think these are the right terms but it's honestly been a long time since I did any reading on it that I'm not sure), really helped me in finding a sometimes peaceful stalemate with my disease.

And the more you can avoid black and white thinking about your future ("I will never have/be able to/etc."), the better. You don't know what the future holds. You may need to plan for non-preferred options in the near term, but there's IMO no benefit, and only negatives, to anticipating long-term doom. What's the expression? Don't borrow trouble.

And some specific readings that may be helpful:
  • Spoon Theory blog entry by a lupus patient which does a great job of explaining the day to day transactional reality of dealing with a chronic illness, and the resulting limited ability to function.
  • Loving what is If you can get past the cheesiness (at least I needed to), I found this a good intro to some of the underlying buddhist ideas that really helped me. It's NOT framed in terms of buddhism, but as a self help process, but I think that's at the core (and the author's husband is a pretty well known buddhist author). I originally read this when going through a divorce, but found the underlying ideas helpful when I was sick as well.
  • How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers I didn't actually read all of this. Honestly her disability hit too close to home for me (same illness as I had, slightly more progressed) and I found it difficult. But I like the idea, and I liked the authors voice, so maybe it'll be helpful.
Good luck. Memail me if you want to talk or commisserate.
posted by pennypiper at 11:07 AM on March 11, 2014 [4 favorites]

Regarding the financials, it sounds to me that your symptoms are so severe that you may qualify for disability coverage, regardless of no diagnosis. (IANYL.)

There is more information from the Social Security Administration here.
posted by miss tea at 12:04 PM on March 11, 2014

Hello, you are me from ten years ago, in many respects. Maybe some of the things I've learnt in the intervening ten years may help:

1) Don't give up. There is help, genuine, medical-not-woo help and you can find it, but you have truly advocate for yourself and keep keep pushing themedical establishment until you get right specialists, right tests, right medicines. Forget gps, you need specialists.

2) Accept your current limitations. This is a big one, with many different dimensions. Though I'm pretty much okay most days in most ways now, for a long time I wasn't. Thinking about what I couldn't do but wanted to was very depressing, I needed to learn to take some things off the menu - in my case literally and figuratively - so I could focus on what I could do (which was still a fair bit). Doing this meant I wasn't constantly pushing myself and failing and feeling bad. It meant that I accepted when I needed to ask for help, or just say no without feeling bad. And it meant that I was taking care of myself and so not so run down, sore, tired etc. And it meant I wasn't so hard on myself.

Stop taking the vitamins, re engage with the medical profession, you will get better, promise.
posted by smoke at 3:28 PM on March 11, 2014 [2 favorites]

I think you have a medical problem that hasn't been diagnosed yet and you're using the vitamins to self-medicate because it's the one thing you can do by yourself when the doctor has failed you. I understand, but the vitamins are merely masking whatever the main problem is at this point and they're not masking it well enough that you can just take the vitamins and let it go at that. So ... you need to stop the vitamins entirely and then see a medical doctor - a specialist in gastroenterology or a good internist. You need tests - a lot of tests - but the tests won't give accurate answers if you're full of vitamins.

The stomach problems can be due to stress and worry and/or too many vitamins on an empty stomach - or you could have an ulcer or other serious business - or GERD, which is only a matter of learning the tricks to dealing with it and taking the right meds.

I also think you're depressed and you need to be under treatment for that. The question comes up, of course, whether you're depressed because you feel so rotten or you feel so rotten because you're depressed. That's what the doctors have to figure out. I'd recommend you not rule out depression and its helplessness and hopelessness, but don't accept the depression as your only problem until you've had a thorough medical workup.

As for the therapist, keep making your payments, of course, but get the physical workup done post haste - you can go back to the therapist once you have some answers and are under treatment, if needed, for your stomach and pain problems. Just don't put off the medical workup until you get your therapist paid off.

The idea of accepting your "sickly" condition at your age, with no real diagnosis/identification of what the "sickly" really is, is just wrong. You musn't waste years of your life fretting about something that might be - find out what IS and fret about that.

Keep us updated, please - the people here care.
posted by aryma at 7:20 PM on March 11, 2014

Response by poster: As late as thank-yous go, I wanted to thank you all for encouraging me not to give up. I never knew how much I needed to hear the words, "This is NOT your reality." I've been to a doctor an d have started the barrage of tests again: but I feel a lot more in control doing it with the hope that things CAN be better.
posted by Autumn at 11:57 PM on April 2, 2014 [2 favorites]

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