Since I’ve been back my thyroid has been wreaking it’s annoying old havoc. While I was away it was so much calmer, perhaps one day a week of pain. For the past week, it’s been four days of pain, which is how it was before I left. I’m still trying to work out what triggers it. In the meantime, I cope, I modulate, I recalibrate and I try to see it all as a necessary gift.

Photo by Brian Oldham

I just had a bad few days of it over the weekend. So I thought I would share just how a typical thyroid day transpires for me, while it’s fresh. And how I cope with the various symptoms. Not to garner pity*, but to comfort those out there with chronic illness who grapple with the loneliness of it all. Mostly, I find, when you have chronic, unexplainable, unfixable illness, all you want is to know you’re not alone and that your symptoms are real and understandable and worthy of recognition, if only via some stranger’s blog post.

* although, if I’m honest, I’m often seeking “leeway” from the world.

But also – and I say this often – I reckon what I learn from having auto-immune disease is applicable to anyone wanting to lead a better, more well life. A life closer to the core. More real. More conscious. When you have an auto-immune disease you are that much more sensitive to the bad shit we do to ourselves and that we’re forced to put up with – the smells, the additives… the noise. We are the canaries down the mineshaft. Want to know what’s bad for you? What’s doing you damage? Ask an AI sufferer! They feel it with their every pore in real time where others often do not.

So. My Sunday.

* Wake early. 5am. Despite being unable to walk properly the night before from weariness, I have not slept. I wear earplugs and an eyemask, but my hypersensitivity on thyroid days means I wake to the slightest stimuli. The smell of the perfume of someone walking past my open window will do it. Perfume…the stuff should be banned. As a canary down the mineshaft, can I tell you, the stuff is poison.

* My feet and lips burn. They’re swollen and bloodflow is restricted. It’s inflammation and lymphatic blockage. My left
eye twitches. These are usual symptoms on thyroidy days. From my neck down, my right side plays up. From the neck up, my left side plays up.

* Realisation #1: Lack of sleep is the biggest trigger for thryoidy pain. It’s that simple. Anything less than 7.5 hours now will send things haywire. A cruel reality when thryoidy days beget insomnia.

* I feel tender and I don’t want people. Near me. In my thoughts. The hub-bub of humanity hurts. I describe thyroid days as: “Imagine your worst hangover and times it by three.” You know when the very idea of the phone ringing and having to deal with someone or some issue hurts to the core? It’s like that.

* Remedy #1: move. In the morning.  I’ve realised lying down doesn’t work, as tempting as it can be. Moving does. Walking, stretching or swimming….very slowly but for an hour at least. Enough to get the lymphs open and flowing. It truly works. Overseas, I hiked on thyroidy days, for up to four hours. The symptoms faded over the day. But I do it in the morning. By the afternoon I’m cactus.

* Realisation #2: being cold is a big trigger for thyroidy days. So is wind. It’s like it takes too much to keep warm. And to deal with the fluster of the bluster. On hot, dry, still days I feel best. Which goes back to the role of vata in all this.

* I go to power yoga …a gentle alignment class. I focus on my breath just to cope. In. Out. I can feel toxins release in and around my knees and hips. It’s not painful; it’s like a syringe of hot, acidic coffee is being injected into my joints. Oddly relieving. Better out than in.

* Remedy #2: sweat. Hot yoga or a sauna. Preferably infrared – read here for why infrared is good for auto-immune disease. Again, sweat gets lymphs moving. But heat also takes the strain off my body. It was windy on Sunday…a yoga class was the best place for me to be.

* Realisation #3: Thyroidy days get me present. By which I mean, due to the fact you can only focus on coping one second at a time, one step at a time, one conversation at a time, I get down and dirty in the moment. I abandon plans, abandon forward-thinking. I’m just coping, like walking across a desert without water. Which I’ve done before. So I know the analogy is fitting.

* I attempt one chore: I go to a mall to redeem a gift voucher. And am approached by no less than five people who read my blog and want to chat and be lovely. Four of the five recognise me from my green shorts. I’m acutely aware I look like hell. Puffy face, small eyes, swollen lips. Delicate. I put every, single, iota of energy into conversing and looking cheerful and grateful. In hindsight I’m glad I look like hell and a lesser version of the glossy me on the cover of my books and the health messages I sell. It’s good aerobics for my ego.

* I seek calories and stimulation. I make no apologies for this. On thyroid days I seek caffeine and chocolate and fat and carbs. All of it. I refuse to punish myself for this. I let it unfold until the feeling subsides and drink coffee and eat 50g of 85% dark chocolate. And nuts. Fat is good for thyroid days, stimuli not so much. But so be it. Coffee gets me through a few more hours. I’ll recalibrate this caffeine hankering another day.

* I crash. I can’t move. I can’t get up to go to the toilet. I hate and resent everything and life is ugly and noisy. I can hear the electricity meter next door ticking. In go my earplugs and on goes my eyemask and I just lie in the dark for an hour. Coping. That’s all.

* Remedy #3: a Thai massage. I’ve tried all the styles. Thai is best. It’s no-fuss and it works to trigger points. And it’s about getting the lymphs moving and the joints mobilsed. It rarely fails to work. It’s an expense I just accept now. I don’t buy nail polish or get blow-dries. I get Thai massages for $40 for 30 minutes. I get the masseurs to focus on my calves and hips.  I walk 20 minutes to the massage, up the hill, in the dark. This works, too.

* I eat vegetables with oil. Fennel, zucchini, peas and bok choi. Lots of oil. This works, too.

* I take a laxative. Yes. My thyroid renders me incredibly stuck and toxic. It’s not ideal, but the priority is to get things out. Better out than in.

* I take aspirin. Yes. It’s a Molotov cocktail of drugs going on here. But aspirin brings down inflammation and helps me sleep in one hit. I sleep. Four hours…

And so it begins again. Modulating. Slowly. One remedy at a time.

Are you coping with chronic illness? How so?

 

 

 

 

Have your say, leave a comment.

  • Elysia Rowney

    Having one of those thyroidy days… or should i say weeks.
    I am currently at 4.5 months postpartum with my second son, the first born 18 months ago. I was diagnosed with hashi’s @ 4 months postpartum with my first son. I felt horrible. I have felt horrible since. It has been a little over a year since being introduced to hashi’s and i hate it. I actually forget what it feels like to feel good.
    Currently i have shortness of breath, headaches and just down right fatigued. eh. Meanwhile, with two little boys under the age of two to attend to. It sucks. I need energy. I need to feel comfortable breathing so I can get through the day without having to stop every minute to fight for a deep unrestricted breath.
    AI sucks. I could not wish for this upon anyone. It really takes your life from you…. There has not been 1 day over this past year that I have not thought of hashi’s.

  • Shae

    Hi Sarah,
    I have Hashimotos too. Today is a half crappy day, the sun is out and i’m thinking of swimming at the beach. I own a café and only make beautiful food, I don’t drink coffee.. and in no way am I suggesting you stop. but I’d like to share with you my view. It’s the worst thing to spike the adrenals when its one of ‘those’ days. Instead I will load up on anti-oxidants (this includes raw cacao, which is what you may be craving). I find acai, goji berries, chia seeds, maca, green drinks, herbal tea (especially rooibos), coconut water and cashew mylk smoothies rock my world and awaken my true senses. Instead of the ugly world views. Turmeric and black pepper for pains, and hugs make a huge impact on human love.
    The Natural Compounding Pharmacy in Brisbane is amazing, they make all natural products and give great advice.
    Peace & best wishes to you on your journey. Thank you for being wonderful 🙂

  • Janelle

    CFS – 40min walk yesterday. Within an hour I was aching. It’ll take me at least two days rest to ‘recover’. With ‘chronic fatigue’ you might think sleep would come easily… Not so… I’m tossing & turning between 11 & 4am… So very hard to get up the next day.

    When I was working (redundancy last Aug) I got more exhausted each day & needed to rest all weekend to have any hope of getting through the next week. Often I nearly nodded off driving home, or sometimes getting home but not remembering which route I took. After ‘busy’ weekends, I rarely made it to work every day (the following week).

    I’m now caught between needing work (to pay bills as I’m a single person without any other support) and/or filing for bankruptcy. Pretty stressful…stress is another trigger. I wish aspirin was enough for my pain… Have tried physio, accupuncture, osteopath… Results are hit & miss (unfortunately) & just getting to/from the appointments can defeat the purpose. My dogs get me out (I’m their chaperone on Therapy visits to aged care facilities). It is great ‘for the soul’ but I’m only just managing the three (or so) hours 3x a week.

  • Rachel

    So good to read this, I’m newly diagnosed with hashimotos and thus my hyperthyroidism does cause havoc more often and not. Glad to see that somedays I am not alone in the feelings and workings of it. Mine has given me heart problems and I’m medicated for that but lately still unable to calm my body down enough to sleep well or I wake up in panics and bad dreams. Not too many understand that “hungover” feeling just from the condition. Thankyou for your insight and tips of what works for you

    Rachel

  • Miki

    thanks for the article Sarah. very hepful. I was diagnosed with hypothyroidism in October last year (2013) everything you described sounds like me! I was on oroxine for about 3 months but I was ecperiencing dull pain in my thighs and groin area so I stopped taking it. What do you take to keep yours under control? any tips would be great!
    thanks

  • I’m having one of these days today so turned to this post for comfort. My thyroid has been pretty good recently – haven’t had a flare-up like this for months, but I’ve been very busy the last week and busy is something my thyroid can’t cope with. So for today I’ve cancelled all my plans and am spending the day quietly at home, just getting through. Am trying not feel guilty for all the chores I’d planned to do that I’m not doing, but need to get some energy together so I can go to work tomorrow.

  • Amy

    How refreshing to read this. I was diagnosed with hashimotos in my second pregnancy 4 years ago and have had two more babies since then. The second pregnancy was so hard. The exhaustion and weakness was so extreme. You read the facts and symptoms (so many) of hashimotos, but they never cover what it REALLY feels like. I’ve never read anything about feeling thyroidy and the doctors don’t even seem to believe it flares. For me I struggle with mental fogginess, not being able to hang the washing out because my arms feel weak, waking up with achey hands and feet, feeling like there’s a frog in my throat and not handling a bump or touch on the neck, if I get a little bit cold I tense up and shiver uncontrollably… The list goes on. I have finally gone gluten free, cut back sugar and processed foods. I am still on a low dose of thyroxine. I am feeling pretty good. My cycles are finally regular, my hair has stopped falling out, I don’t have to rest much through the day, I actually have energy. So good.

  • alevi7

    So wonderful to read this and not feel alone in my AI issues. I have Hashimoto’s and Fibromyalgia. I am on day 3 of quitting sugar and feeling very inspired and hopeful. A few days ago I was alerted to the potential benefits of LDN (Low Dose Naltroxene) for Autoimmunity. I’m thinking of giving it a try. Sarah and others – have any of you tried it? I’d love to get some feedback on your experiences.

  • Tajehra Ayala

    I love this. Makes me feel like I’m not alone. Thank you for sharing. And helping me put all my symptoms into words.

  • madethatway

    Warning: long rant.

    After 9 years now of living with a hyperactive/thyrotoxic thyroid condition and surviving countless thyroid storms, I’m here to tell you that it’s not the killer that drug companies (and their legal drug pushers – the quacks) would have us believe it is via their little scare campaigns and tactics.

    In fact, the only people I know who died where this disease was concerned (there were 5) were those who stupidly believed doctors were gods and drug companies were the epitome of ‘care factor’ (even typing that makes me want to puke – disease notwithstanding) and followed the toxic medical ‘treatments’ all the way to their graves.

    Like you, I have really, really, REALLY crappy days; I cough, I vomit, I shake like a human jackhammer, my heart sometimes pounds so fast that it feels like I’m going to black out (so far, that only occurs if I’ve allowed too much dairy to creep into my diet), frequently can’t leave the house because I’m chained to the bathroom, and often survive 4 consecutive nights without sleep – usually 2 – and not by choice.

    I’ve lived alone out bush because more often than not, I can’t stand the company of other humans for a variety of irrational reasons, their voices, their stench, their holier-than-thou personae, their mindless gossip, or their constant jabber about utterly inane rubbish (which is why I can’t and don’t watch tv) – and the only thing that brings any blessed relief from humanity’s bullshit, is animals.

    Anti-social and proud – at least, for now.

    From personal experience, I know that one CAN survive this disease without traditional medical poisons, but blowing sunshine up your own arse by pretending it doesn’t exist, doesn’t help.

    Hypnosis did nothing. Louise Hay type chanting did nothing. Willing it away did nothing. The paleo diet did nothing. A raw food/juice diet did nothing. An all veggie/no dairy diet did nothing. Ignoring it did nothing.

    In fact, dried herbs (including cayenne pepper) brewed into teas are, so far, the only things that have helped take some of the edge off some of the worst symptoms. Nothing else.

    Unnecessarily expensive acupuncture and assorted ‘Naturopaths’ (wannabe allopathic quacks, all of them) with their airy-fairy mumbo-jumbo were a total joke (to me), as are their own brands of ridiculously expensive bottles of ‘fake-ness’.

    Gee, do I sound a little cranky?

    Welp – being screwed seven different ways to Sunday by so-called ‘professionals’ all wanting to hook you into a cycle of hemorrhaging money to pay for their expensive lifestyles, expensive houses, cars, annual o/s holidays and private schools for their spoiled little brats, all in the name of ‘helping you get well again’, when they know full well they can’t and that their ‘treatments’ are less than useless, kind of has that effect upon you after the first few years….

    If I’ve learned anything, it’s that the sooner you start thinking for yourself, the sooner you divorce the medical and naturopathic world, the sooner you become willing to remove yourself from herd mentality and search for solutions that work for you (and not the fads of ‘the herd’), the better and easier this disease will be to live with, until such time as your body decides it no longer needs the disease to get your attention anymore.

    Just an interesting bit of info: Graves Disease is so named after the man who discovered it – Dr Robert James Graves (27 March 1796 – 20 March 1853). Even more interesting is how many in today’s utterly useless medical profession have never heard of him.

    Graves also discovered that there were 3 causes for the disease:

    1. Extreme stress
    2 Hereditary
    3. Severe illness

    Yet few quacks today are even aware of that, preferring to tell people that no one knows what causes the disease, and will give you The Blank Look Of The Incredibly Stupid if you correct them with the facts.

    End rant.

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  • Mina

    All of your stories sound so familiar to me. It helps to have read them and to know I’m not alone. I’m now wondering if my childhood was giving me a clue that I would end up with hypothyroidism as an adult. The “perfume should be banned” comment is just one of many clues. As are the comments about skin reactions to basic things like a ham sandwich and other food items that are laden with chemicals.

    On another note, hanging out the washing followed by a sit down, as someone pointed out, seems so unbelievable to family members. (I don’t bring it up with anyone else – my own mum mocks me about it and thinks I use it as an excuse not to help her around her own house).

    As for specialists, I find it hard to believe that “good treatment” means going for a yearly visit after blood tests and just being told that my levels are normal while on medication and that, “I think you shouldn’t be experiencing side effects while on medication.”….That “I think” just killed over ten years of university study…

  • Gemanb

    I think the hardest thing about having a thyroid problem is being able to accept yourself with a thyroid problem. Reminding yourself constantly that you are not being lazy, you are sick. I always have this problem of being mad with myself for not being able to do things or for needing caffeine & chocolate to get me through the day. The hardest thing for me is accepting myself & my limitations. It’s nice to know that I’m not alone though, it helps to read things like this to see that there are others out there struggling with this same affliction. Thanks for writing this, it really helps.

  • dianapasco

    I appreciate what you shared. And you are right. It feels good to know one is not alone and symptoms are not all in one’s head, validation and recognition. It’s difficult living with hypothyroidism and fibromyalgia, among other things. I constantly feel horrible over not being at my 100%. Constantly get criticized for forgetting things and labeled as lazy and a fluke. Once upon a time I would see things once and never forget. Now I constantly forget even my conversations at mid sentence and my mind just goes blank. I’m in constant pain, depressed and tired and made to feel guilty and misunderstood. It’s just nice, though it’s not a nice thing to have, that there are others going through things like me.

  • whitepointer

    This feels like me. So sick of years and years of no one listening that I have a thyroid problem (under) even though my Mum had hers out at 56, same age as I nearly am and all her sisters having problems. I got thyroidistis 15 years ago and have never been the same since even though my thyroid tests came back within :normal” range. I have just discovered that 2.5 is right on the line of underactive thyroid and apparently they changed this reading recently to this otherwise I would be hypothyroid and I found out the optimal thyroid level these doctors want a person at is 2.00 and they adjust the meds to that. Im fucked off big time. How many years have I been going down there to these doctors and they fob me off with this reading, “its normal” even when I have put on 30 kilos in 15 years and I am normally a size 8. I have every symptom. Pissed off. Im going to demand some thyroxine tablets because this is not living. All I do is go to the physchiatrist and up my medicatiosn for depression. Im still depressed…so go figure. Just had to vent. Im gonna demand to see an endocrinologist.

  • kelly weaver

    Currently getting over a strep uti..which triggered my thyroid..I’ve been down for two weeks.. took one synthroid pill and I think I can tell a difference. I say “I think”..because I’m scared it’s just my mind playing tricks on me.. ive been that sick. Two hospital visits.. not to mention Dr visits. My pcp was on vacation and I’m sensitive to everything ..so finding the right antibiotics took it’s toll. I’m not the kinda person that likes missing class ..I chose to enroll ..so ultimately I choose to be there.. through all of my illnesses.. visceral hypersensitivity with a history of gastroparesis.. Graves disease turned hashimotos thyroiditis.. ive missed several days .. I felt like complete crap .. no need for exaggeration..it was full throttle no feel good. I couldn’t get off the couch..which I can’t stand in if I’m deathly ill.. I guess my point is .. even with having thyroid problems all my life ..I’ve NEVER felt as bad as I have these last two weeks and my Dr says it’s probably because the thyroid/infection/antibiotics combo triggered my thyroid to attack..I dunno ..I’m still looking for answers cause I just didn’t understand what she was saying.. she didn’t elaborate..and plus I’ve had major brain fog and confusion.. even with two degrees it all makes sense but doesn’t make sense ..if any of that even makes sense.. I felt like I’d played in traffic ..I’m still not 100% back to good ..but I feel like 35% better after taking one pill.. (I started synthroid yesterday)..25mg..
    I’m not needing a pity party.. I just feel lost with yet another gd disease..and my body as much as I love her ..reminds me of the whiny kid in class ..I am sensitive to EVERYTHING.. ive had so so so many reactions to medications..most required hospitalization.. is this really forever.. ugggg

  • Raj

    all you white devils should f off yoga is not for you devils you don’t even know what true yoga is.quit missappropriating our indian religious practice it is not for you colonial crooks!

  • Dr Josh Lamaro

    you may be surprised to know that sugar is required for thyroid hormone production, as well as feeding glycogen replenishment for the conversion of t4 to t3 in the liver.
    we must move away from the dogma that sugar is bad and address the reasons certain people do not deal well with it (ie dysfunction at the mitochondrial level)

  • Mary Q

    I have struggled with my thyroid for years now and was just asking myself what I am doing wrong to be so puffy and hideous all the time! I’m happy and sad all at once to hear that I’m not the only one. I wonder how you have good days? I am on armour thyroid, and I end up taking a ridiculously long nap every morning and than hate myself for doing it. I do not ear gluten, meat or dairy. I just feel like I’m out of control and I don’t know what to do. I have hit a stand still in my weight and I want so bad to get it off. I run and weight train and do various other cardio and still my weight doesn’t budge. I know I must be doing something wrong! Help!

  • Christine Mary Lorraine Burns

    Excellent article 💜

  • DDis4u

    .It is wildly fascinating how accurate your descriptions are. I have not found anyone that was able to understand the pain of everyday life. And yet, you are mastering some of them. I imagine these have been a struggle and I’ve contemplated keeping a journal of things that work, and don’t. I’m currently going through a rather big thyroid excursion. Nothing seems to help, and exhaustion is my enemy. I adopted my granddaughter at birth so many of your techniques are great, but probably impossible for me at times. I cope most days, but some are worse than others. Being single with the bills piling up aren’t helping; which causes added stress, which in turn adds to the thyroid/AI issues. My second round of tests and my ANA’s are still 1280, increased white/decreased red, thyroid is triple its size, its getting harder to swallow with no pain, occasional coarse sandpaper feelings in the throat… I saved your info on the Infrared Sauna, I loved the info you had in there. I am going to attempt this one as soon as possible… I will be following your info, and maybe once I start my journal I too will be able to give some positive input like you have done.
    Wishing only well thoughts for you and anyone else that has AI issues or A.I.D.

  • Sarah S

    I ended this today. Been having a thyroidy year. I had a hysterectomy 2 years ago and I haven’t been able to level out yet.