You may have noticed I'm on a project kick lately: all I want to do
is build stuff and browse the internet for more stuff to build, ha.
If you have anxiety or depression, ADHD, or any other flavor of mental
health struggle, then you probably know the power of a new obsession. It's new!
It's distracting! And it's something better to focus on than all... ::gestures
vaguely:: ... this!
Plus, in my case, it involves FUN HALLOWEEN STUFF:
Oooh, I want to make these. So cute! Plus fake candy apples are an appropriate segue to my next topic, Complaining About Food.
I've had a series of unfortunate food events the last few weeks, and
spent too many nights - including last night - pacing the house because it hurt too much to sit down. I pace and pace, often
'til 8am or later, only to collapse and sleep through most of the next day, then wake
up to migraines, anxiety, and allergy attacks. If you'd told me ten years
ago that something as harmless as cherries could destroy my physical
and mental health for 3-5 days, I'd've scoffed. SCOFFED, I say. ... Yet
here we are.
I've been eating Low FODMAP for 3 years now, so
you'd think I'd have it down, but I keep messing up, dangit. It's so
frustrating! I forget I can't have peaches and try a new jelly, or I don't
check the ketchup label for onion powder, or sometimes I'll eat something
that SHOULD be safe, but still hits me like a semi. Those are the worst; why did this tofu fried rice John's made a dozen times
suddenly puff me up like Violet Beauregarde? What did I miss? Is there
something else I can't eat now? Whyyyyyy.
Anyhoo, when I
finally come out of the pain & insomnia haze, I'm 3 days behind and utterly
exhausted. All I want to do is sleep and make cute Halloween crafts.
Exhibit A:
I can stop going to Dollar Tree any time, y'all. My craft supply hoard is completely under control. Yep, yep, yep.
Worse, I keep accidentally starting the cycle over again, and each time I feel a little more stupid. When I get that first ache and realize in a panic that I've messed up
again, and have at least 8 hours of pain and pacing ahead - but can't
take pain meds, because they cause constipation which makes everything
worse - I crumple. How do y'all with chronic pain do it? I
want to be nonchalent and stoic and write witty jokes about how life is pain and anyone who says differently is selling something, but truth is when my gut is full of
bowling balls and knives I shut down. I have a strict regiment of isolation,
pacing, Will & Grace re-runs, and rocking in place in front of a
jigsaw puzzle. John remarked the other day that I rock in place all the time now, so hey, at least I picked up a new habit that'll make people steer clear in public.
When the pain does finally stop, next I feel awful for losing all that time. Whole days, poof, gone. With nothing to show for it! And I need things to show for it, y'all. I base an unhealthy amount of my self-worth on productivity. So I swap a physical health crisis for a mental health one.
Any of this sound familiar? Because this can't be just me, right? I know some of you deal with
all this and more. So tell me, how do you cope? What do you tell
yourself, what do you do, to make it better?
Better question: What's something you treat yourself to on your worst days? Bonus points if it's Low FODMAP. :D
And to share a little more sweet with all this sour, here are a few more Halloween goodies making me smile:
"It's only a flesh wound."
OK, maybe I just found this one relatable.
Another cute craft idea if you have a diffuser:
And some amazing cut-outs for a garage I'd like to try someday:
John and I've been working on some exterior Halloween decorations that I really hope work out, though as usual we're attempting things no one's ever done before on a shoe-string budget. No Ghostbusters this year; the new movie doesn't come out 'til November, so we're saving that for 2022. Instead we're got another classic movie in our sights, one many of you know and love. Stay tuned, I hope to have some updates on that in a few weeks.
Oh! One last happy:
Muppets Haunted Mansion drops today! We're watching in the Epbot Discord tonight at 8:30EST, if you'd care to join us and peanut-gallery along.
While writing this post I found myself deleting a lot of terrible things I'd written about myself. I realized I would never say anyone else was weak or lazy for needing rest, so why was I saying it about myself? Let's promise each other we won't say anything to ourselves that we wouldn't say to a loved one this week, k? I'll try if you try. You're enough, just as you are, whether you're vegging on the couch or out saving the world. I hope to be able to say the same about myself someday, but for now, I think I'll settle for a guilt-free nap.
::squeezy hugs::
*****
P.S. Someone recommended the enzyme supplement FODZYME, which claims to let you eat most FODMAPs without pain. I found a similar product on Amazon called FODMATE that looks to have the same ingredients, plus twice the doses for roughly the same price:
Have any of you tried either of these? My biggest challenge would be knowing when to use it, since I never intentionally eat a FODMAP; it's always an accident. Though it would be nice insurance anytime I'm eating at a restaurant or someone's else's house, to take just in case.
I’ve had four surgeries between both hands in the past year due to a work injury (but because it’s work comp, I still have to be at work). I wish I had good advice for dealing with pain. I try deep breathing and focusing on something else. Sometimes it helps, sometimes it doesn’t. I’ll be praying for relief for you!
ReplyDeleteAw man, I'm sorry that you got hit with this all. Be gentle with yourself, emotionally at the very least, and I hope things smooth out like a fresh jar of peanut butter for you soon.
ReplyDeleteChronic pain is a real mindbender. On a high quality day, sit down with John and make a list of your bare minimum accomplishments for your pain day to be a Pass. Not productivity but actual tasks which can be accomplished. Sorting laundry can be done over hours, dusting window sills as you pace by, checking pantry items for expiration dates- actual tasks but no mental effort. On those awful days, pull out the list and aim for one. Once done, try for a second. Seriously, tiny tasks to check off on a list will soothe you: look what I can do on a sucky day.
ReplyDeleteBig hugs, lady.
- Barbara Anne
That is seriously good! I'm going to try this for myself, thank you!
DeleteTotally agree! Years ago I got sick and was in pain and swelled up like a puffer fish. Felt so useless and had a 5 years old to take care of, though I sure it's safe to say she took more care of me... Anyhow, long story short I came up with minimum day. Had a list of 5 things to accomplish during a bad day that would 1 - keep the house from falling apart and 2 - still let me feel productive. The 5 things were - emptying and reloading the dish washer (so I didn't have a sink of dirty dishes being accusational), running the vacuum in the livingroom, sorting the day's laundry into the sorter, making the beds, and cleaning out the litter box. If the pain was too bad or or was too hard to walk, I could stop and lay down for awhile and try again later. This took the pressure off of "wasting a day" and let me know I could still be a regular person dealing with unregular circumstances. The 5 years old could help after school if needed. Emotionally this helped immensely. It made life emotionally much better and with the pressure off, I was able to heal better.
DeleteMaureen
P.S. It was great to see you in Pittsburgh!
I'm a long-term FODMAPer so I feel your pain. The most helpful things for me have been the probiotic Align (it has to be the brand name, the generic ones don't have the same bacteria and aren't helpful, at least for me), very strong peppermint tea, and some supplements (magnesium, calcium, and vitamin D have been the most helpful). That supplement looks intriguing, I may have to try it! I've been able to add some high FODMAP foods back in over the last few years but with the general crappiness of life at the moment I've had to go back to stricter rules. Many hugs your way, I know how debilitating stomach pain can be <3
ReplyDeleteDo NOT feel bad for "losing all that time". That time is what heals you so it is totally not lost!
ReplyDeleteMy niece mentioned that enzyme stuff. I'm not FODMAP, but I am sensitive to onions and garlic (I'm nordic, it's to be expected). I don't miss garlic, because I don't like it; however, it would be really nice to be able to eat food with onions in it without worrying that I'll still be tasting on Monday the onions I ate on Saturday.
ReplyDeleteMy solution as a palliative nurse would be to treat the pain (opium and belladonna suppositories, believe it or not!) and deal with the constipation with senna bowel stimulants. You would probably have some trouble finding a doc willing to prescribe those! Gas and digestive pain is the WORST, sends folks to the ER all the time thinking they are having a heart attack. I'm assuming the fancy FODMAP pills are repackaged Beano, which is a digestive enzyme to help cope with stuff your gut is not digesting. I have found beano to be hit and miss just with mild digestive issues so would ask your specialist before trying an OTC of any kind. I would also suggest trying a heating pad if you are not already using one,it can help for gut cramping as well.You have a lot going on and I am so sorry your grumpy body is keeping you from doing stuff you enjoy. I just have to keep reminding myself that I will have good days as well as bad days and give myself permission to ride out the bad days however I can to cope. Still beat myself up because that is how we are trained in our culture - but retraining the brain is an ongoing project. You are doing great with that!!
ReplyDeleteI learned from a PT that sometimes you can confuse the pain-signaling nerves by providing alternate stimuli, either there or elsewhere on your body. The penguin massage wands (they are somewhat peanut shaped, and about as long as a pen, and use batteries; I use eneloop rechargeable batteries) work for me for abdominal pain, albeit for values of "work" that are "diminish by 5-30%" rather than eliminating it.
ReplyDeleteDistraction is another go-to for pain management; you're probably doing some of that by pacing? If you can add an audiobook or podcast or music to your pacing, that may improve your experience, or may not.
Also, in prescription drugs, anticholinergics help some people, and low-dose amitriptyline helps some people with turning down the gut's overresponse to some things. Obviously, talk with doctors to see what's right for you, etc., etc., but there are some non-constipating things out there that you can try. (although finding the doctors who know about them, rather than the New Brand-Name Constipating IBS Drugs that are being advertised to them, can be tricky, unfortunately)
In "managing the feelings that go along with losing a lot of time to a chronic illness" - know that there are a lot of people experiencing the Same Thing out there, and treat yourself like you'd treat them. Do what you can with the time that is available to you; let go of your expectations of how much time is available to you; easier said than done.
Hope you find good relief!
I just gave birth (to a 9 lb 1 oz baby!), and developed pre-eclampsia POST partum. So, then, I had to recover from having a blood pressure issue AND giving birth, and, uh... long story short, I popped a stitch. Because I don't like being "weak".
ReplyDeleteOnly, y'know, would I ever tell anyone else that NOT doing much after they *created a whole new human* that they are weak?
No.
Just myself.
I have to remember what my therapist says: "be nice to yourself".
...Still working on that.
Yep, we're the ones who can forgive, support, and encourage everyone EXCEPT ourselves. I feel ya.
DeleteI like learning something new just for the hell of it. My latest kick is working through the Japanese course on Duolingo. The owl is adorable and always tells me how awesome I am. Even if I don't have the energy/freedom from pain to accomplish what I want in a day, I can still spend 2 minutes to keep my daily streak going. And now I recognize some words when I watch anime! I don't know if your pain makes screens an impossibility, but maybe pacing & Duolingo can be a thing?
ReplyDeleteOne thing that helps me when it is a particularly bad gut day is to run an appliance that vibrates and gets warm. Dryer is the best. When the chronic fatigue is getting to me, I get out a kitchen timer, and I set myself 5 min and a small task. Sort a little pile, sweep the front entry, empty a few small trash bins into a bag to go into the outside trash, that sort of thing. When the timer goes off, I'm done, and I set a timer for the break I need. (Not the one I want to need, but the one I do need.) If the task wasn't finished, I set another 5min timer and work on it. I actually do this pretty frequently on good days too, I just set my timer for 15 or 30 min runs, and the breaks are much shorter. I can do all sorts of annoying things if I am allowed to quit after 15 min. :)
ReplyDeleteI have to second the distraction with alternative sensation idea, heat pads especially have worked for me. Most have auto off timers, but I found some of the plug in heated cat beds don't and they work great when you need hours on end of pain relief. I would often sleep on them. And I also second magnesium, it can help with anxiety (pain often triggers anxiety - fight or flight) and motility. And yes to Align also, it helped with my SIBO (small intestine bacterial overgrowth). Simethicone (like in gas ex) can help, also Betaine HCL and/or bromelin (enzyme from pineapple) to help you digest your food better/more.
ReplyDeleteYou could also try a fast acting laxative to move the pain causing stuff along faster for sooner relief. Or abdominal massage.
LOVE magnesium, I take Malate & Glycinate every day, and could stand to take more; they're just such huge pills! :p
DeleteI've *just* in the past few months started taking a laxative during a reaction - it seems so counter-intuitive when everything already hurts, but I think you're right: better to get it over with faster, ha. >.<
Magnesium is wonderful. I've been using a topical magnesium spray for headaches, restless leg, and fibromyalgia pain. I notice I hurt more when I don't use it. And I don't get the restless leg as often. So, I definitely have a magnesium deficiency. I spray it on before going to bed. Some of the reviewers say it helps their PMS symptoms. I'm going thru menopause so I haven't been able to test that out. :^}
DeleteThe Happie Coconut has a spray with and without lavender. I have a bottle of it without lavender.
https://www.etsy.com/listing/612216949/happie-coconut-magnesium-oil-spray-with
~LST
I was also going to recommend something with Simethicone, which basically is an anti-foaming agent that helps gas bubbles in your digestive tract disperse. My reaction is what is politely called 'trapped wind' in Britain, and the gas build-up causes excruciating pain like you describe, Jen! The main product we have here isn't one sold otc in the US, but Google says that Gas-X and Phazyme are a couple of brands in the US that have this. It's truly a life-saver!!!
DeleteK&H brand pads worked for me and the cats love them when I'm not hogging them. 😂😂
ReplyDeleteThe self-recrimination might be even more painful than the pain. I know I shouldn't blame myself, because I'm human and everyone makes mistakes, but when I give in to some food temptation--or worse, just forget my limitations--and mess up my guts, I truly hate myself for it. As much work as I've done with self-compassion, it flies out the window anyway.
ReplyDeleteI'm learning it's a slow journey. Maybe we don't see our progress - and maybe we'll always fall back on our self-hate in hard times - but I bet the more we talk about it, the better we'll get.
DeletePrayer. Especially sung. The Kyrie gets a workout.
ReplyDeleteFor a treat, a real mint julep under my sittin' tree. Which might not do for you so well. A favorite nommy treat is bacon-wrapped cantelope.
When I was half blind with the pain, and lost it, it was okay to think "I acted badly today (lazy, weak, ill-tempered, you name it)". But I am forgiven, and today, I am going to be diligent, and brave, and kind. And I will ask for help from those who love me (including God) and I will help those I can, if I can.
So *today*, I am not any of the bad parts of myself, that come out when body and mind are taking damage. I may be again tomorrow, rotten luck.
But that's just us humans being human.
And you've always looked extraordinary to me. I admire the way you shine through the dark places.
How do those of us with chronic pain deal with it? We have no choice!
ReplyDeleteSeriously, for me at least, I do the bare minimum when my pain is bad. That can be just getting out of bed to sit on the sofa and watch TV. That could be just sitting up in bed when the pain is really really bad!
And the hardest part is always (ALWAYS) not ‘beating myself’ up over what I *haven’t* done.
Be good to you. You will thank yourself later.
Amen to that.
DeleteHugs. I hear you when you say you have no choice, but you're still here, and you're spreading encouragement & love to others instead of (well-earned) complaints and anger. I'd say that's a choice, and a beautiful, inspiring one.
DeleteI'm so sorry you're going through all that. I have Anxiety Disorder bad enough to be on disability. I was triggered this week by PayPal taking money in error and making my rent late and more. (My bank schooled them, so all is good now.) I needed to be working OT to make up for the financial pain but couldn't because my anxiety went through the roof. I finally just took to my bed with yarn, a crochet hook and my pets. Normally, this would be the worst thing, but it was exactly what I needed for a day or two. I felt so guilty at first, but then realized: how was I to pick back up and move on without regrouping however I could? So, no guilt for me. Just a couple days of lowering my anxiety gently. I know this isn't pain - which sucks so much - but it is something I fight with feeling guilty about. Don't ever feel guilty for what feels like laziness, but is actually self care and a sign of self love - and respect! Treat yourself like you love and respect yourself and never feel guilty for taking care of yourself however you need to. You're all you've got, dearie!
ReplyDeleteI love this, for me and for you. Thanks, Mary. <3
DeleteYou may be triggered by histamine. I sounds like you are working with a great functional medicine doc. Histamine hyperreactivity is a sneaky thing that I've been seeing more and more of in my practice. Luckily it is short term for most of my patients (more of a histamine-overload vs. a true intolerance. This is a good overview. You will see why the food triggers can be maddeningly unpredictable. For my patients. the food restrictions have always been short term. If this is what's happening, it doesn't mean you will always be struggling with this.
ReplyDeletehttps://www.histamineintolerance.org.uk/about/the-food-diary/the-food-list/
Message me if you want to ask any questions. I've been here since early cakewrecks. You're humor has helped me through hard days. I'd love to support you in return.
Whoops. Thought I posted with my name.
ReplyDeleteOMG. Seriously, good at medicine. bad at rech. I'm brennamurphynd on Facebook.
ReplyDeleteMe again. Fodzyme has good research behind it. I'd recommend you buy a bottle of that (or snag a sample if you can) and use it to see if fodmap enzymes help you. If they do, you can then try the less expensive option to see of that product pulls it's weight as well as fodzyme.
ReplyDeleteMy daughter is on a FODMAPs diet and also has eosinophilia. She had a really rough spring & summer, as certain times of the year seem to cause everything to flare.
ReplyDeleteThese are the things that help her the most:
- Proton Pump Inhibitor - Prevacid specifically
- Zofran
- GasX - this has actually helped the most of everything when she's having acute pain. It has been a game changer. She uses the chewable peppermint.
And regarding the enzyme, I think it might work, but I totally forgot to ask her GI about them at her last appointment.
She has found that eating dextrose (e.g. smarties) will counteract small amounts of fructose if she has them at the same time.
That's fascinating, times of the year make it worse?? And you're blowing my mind with the dextrose/fructose thing, this is some high level FOD-math, ha.
DeleteI do take GasX during reactions: of course by then it's mostly too late, but I think it still helps a bit. I'm fortunate that my reflux has almost completely disappeared, but we keep ramatidine(sp?) on hand just in case.
My issues are more related to gastritis (acid in the stomach) that I can mostly manage by limiting high acid foods and a daily famotidine pill (Pepcid). But I noticed my major flare up happened at the start of Fall this year and last year. Some additional reading and talking to my doc seemed to suggest a connection to seasonal allergies. Who knew??
DeleteOthers have mentioned heat pads - this one has been a game changer for me for intense period/gastro/lower back pain: https://www.etsy.com/listing/203043626/xl-microwave-blanket-bed-rice-warmer
ReplyDeleteThe size makes a huge difference (no pun intended...) since it's big enough to cover your whole tummy and wrap around a bit, and I think the weighted-ness of it also helps when the pain is keeping me awake. I've been toying with the idea of sewing ties to it so I could wear it like an apron...
I should try heat more, I haven't been able to say if it helps or not, but it's certainly distracting & can feel nice. I have a weighted heating pad that's meant to wrap around your shoulders, and it fits around my waist the way it sounds like yours does. Good idea to add some ties!
DeleteJust because you've been living with a diagnosis for a few years doesn't mean you get everything about it. And it's completely normal to slip in your caution, because ya know, it's bloody HARD to keep your guard up about food all the time.
ReplyDeleteI got diagnosed with celiac on December 8, 2011. The first couple years, I was learning and figuring out how to cope, and then, yep, I hit that plateau where I thought I had it under control and was coping and if I just did all the same things I had been doing, I'd be totally fine. I was not. Depression hit hard, and I got angry at other people because how dare they be able to eat what they want, and got angry at myself because how dare I lose control and slip up.
What you describe, it's not uncommon. It's a normal, VALID reaction to living with a chronic issue. And it SUCKS, in ways a lot of people don't get. What helped me get through that plateau was paring down my diet to food and brands (especially brands) that I knew I hadn't had a problem with. Yeah, it was boring and blah for a while, but it helped reset my gut and my brain, to get myself back on solid-ish ground. Eventually it'll become second nature, and you'll find yourself automatically checking labels or becoming numb to what you can't have. Until then, hit that reset button when you need it. (hug)
Thanks, C.N., you get it. <3 We're back to eating John's famous "Safety Soup" and chicken & rice for a while, and let me tell ya, just these couple days without pain have been a God-send. I'm still exhausted, but having no pain makes me wanna dance. Briefly. Before taking another nap. :p
DeleteI've heard that there are no stupid questions, so... Have you ever tried Ayurvedic/ herbal remedies? I can eat just about anything. As long as there are no artificial sweeteners in it. Just the smallest amount and all hell break loose. (With the rumbling and the feeling of knives cutting up your gut.) The only thing that will calm my stomach is a decoction from star anise. I put at least three of them in a cup of hot water and let it sit for at least five minutes before drinking it. I even chew on the softened parts of the "star".(If you want to know more about Ayurveda I'd recommend joyfulbelly.com)
ReplyDeleteI haven't, no, though I do swear by ginger for belly woes: I eat it straight. Back before I realized milk was causing my reflux, candied ginger was the ONLY thing that helped with the pain, more than all the over-the-counter antacids combined. I'll have to check out star anise!
DeleteFirst, always remember that time spent healing your mind/body/spirit is NEVER time wasted.
ReplyDeleteMy very bad IBS episodes stopped when I got my vitamin D level up to normal. The "nutcracker spasms" in my esophagus that sent me to the ER several times stopped once my GI doc put me on a low dose of Amitriptylene.
When Mom broke her butt (a sacral ala fracture from sitting too much after a stroke), she found that sniffing lavender essential oil helped turn off the pain sensation in her brain. Even if it was a placebo effect, it worked. Hope some of this helps. Take care, hon.
I saw an add for Jovi pads lately, and I'm thinking of giving them a try. Maybe they would help? The reviews are promising. https://meetjovi.com/?gclid=Cj0KCQjwnoqLBhD4ARIsAL5JedJFlH8KNNJ3I_DczjXKw5sJcJ_sbxnyuyW89Uky3rKjUGlzSGzXbnQaAuGeEALw_wcB
ReplyDeleteHmm. Looks highly sus to me, but I've also been wrong about alternative treatments before!
DeleteWait a minute, Muppets Haunted WHAT? Why was I not told that this was a thing? I think I need to watch that!
ReplyDeleteMy therapist mentioned something called acceptance and commitment therapy for those with chronic pain. Might be worth checking out.
ReplyDeleteRecommendations:
ReplyDeleteTrying to some meditative techniques. I enjoy the Oak app. It won't make the pain go away but maybe it can help you kind of "zone out" or go to a "relaxing-ish" place. Your therapist might also be able to recommend some ways to go about it. I've also found tapping for anxiety to be really helpful - which I learned from my therapist. That's also something I've found - its hard and counterintuitive to relax when you're in pain but sometimes I find that I'm bracing against the pain which is its own kind of pain and sort of making me feel worse. So like trying to relax and just feel and breath into the main pain. My therapist also gave me a handout on G.R.A.P.E.S which are categories of things to make note of each day and when I include it in my journalism it definitely helps remind me of the good things and makes me feel better.
I'm sure you're working with your doctor but it might be good to let them know how much you are struggling - sometimes its easy to assume all the options have been covered so you just have to deal with it and also how we can sometimes be critical of doctors but they can actually know things sometimes. Also, maybe they can prescribe something for your sleep so that way you can get to bed - i usually find sleeping is a good go to when I don't feel good both for healing and also to knock out so I can't feel anything.
And can John (in a nice way of course) maybe remind you with something like "Jen, have you been nice to your self today?"
All in all, that sounds really rough Jen and I'm thinking of you.
I love reading your blog for all the crafts and the joy and the fact that you are very honest about your struggles. You said something in this one that I am fighting with right now and something that I am going to work harder on. "Let's promise each other we won't say anything to ourselves that we wouldn't say to a loved one this week, k?" I promise to remember that I am enough just as I am. Thank you for the reminder.
ReplyDeleteI have gotten so much stomach pain relief from adding kefir to my daily consumption. I worked my way up from a couple of ounces adding more a little at a time until I found a good balance at 12 ounces a day.
ReplyDeleteI just did a quick couple of surface googles (lactose & low fodmap with kefir) and it looks like something that could be beneficial to at least look into. The grains can be ordered, and then you feed them the milk & they produce the kefir. We make it daily from grains and 2% milk.
It's a living thing so if it looks like something that could help research kefir itself before diving in.
I truly feel you on the food issues. The only way I can be in not complete misery is by doing low carb + low FODMAP (I initially used the Fast Tract Diet app to figure out what's likely to cause problems, but now I just know). Everything that used to make me instantly happy when I ate it--cherries, corn on the cob, sweet potatoes--is a no go for me. Fast Tract is good b/c it incorporates portion size--so sometimes you can have a taste of something nice, just not a lot--although it doesn't take into account that some of us react worse to FODMAPs than others. I do take Betaine HCl because I definitely also have trouble digesting meat without help, and I also had to cut out nuts almost completely. That has really helped, though.
ReplyDeleteCan I tell you what's been saving my sanity lately? This recipe: https://elanaspantry.com/creamsicles/ It's so little orange juice per popsicle that I can handle it, and if stevia doesn't bother you (it doesn't bother me), they're really magical. Sometimes all that gets me through the night is looking forward to my popsicle the next day!