Sunday, January 16, 2011

It's not over til it's over

It's time to write again. Tonight I went out to a social event with some people I've known for a while and others who were new to me. It brought up stuff, thyroid and illness related stuff.

I haven't written here about my thyroid much lately; I'm not too sure why, maybe I'm sick of talking about it? Maybe I think I should stop talking about it, let it go and focus on other more positive things. The problem with that is that it's not over, it's not over 'til it's over. The journey of what it is to be unwell is continuing. I am now experiencing symptoms of an underactive thyroid due to my medication for the overactivity. I am having 3 weekly blood tests to keep an eye on things, hopefully soon I will be off medication and my thyroid will function 'normally'. People think that being physically sick is the only problem with illness. That's a myth, there is so much more to deal with than one would imagine.

When you've been sidelined for 9 months of your life, made a forced resignation from your job, spent 2-3 months at your parents place (300km from your life,friends & partner), lost 15kg (and put 4 back on), lost fitness and muscle strength and struggled to maintain self-confidence at times- well your life looks and feels really differently to anything you have ever known.

Once you've been so unwell that you dread hairwashing day because it's too long to have to stand for in the shower, your perspective changes. When you've been so unwell that driving yourself around the corner to the Dr's is a new and exciting achievement- your view of your life and what it's all about changes. When you have lay in bed day after day, week after week wondering why you can't get out of it without feeling horrifically lightheaded, anxious and exhausted-your reasons for wanting to live and to be healthy, they change.

I haven't come across alot of people who can say that they identify with my experience; but I know that chronic and debilitating illness has affected many. It's quite likely that because I'm in my 20's I have far fewer people in my life who have been chronically ill.

So when I meet someone who I don't know or don't know really well and they ask what I do for work, at the moment I have to tell them 'I do nothing'. It is a strange and unexpected answer to most. Therefore I follow up with an attempt at explaining briefly why I don't have a job right now. I often tell them what I used to do, to satisfy their curiosity about the 'type' of person I might be. We all know that asking someone's profession or line of work helps us to think that we know them better, somehow.

I must admit that I really hate telling people that I do 'nothing' and following up with the story of illness. I never wanted to be the person who had that story. But I do and that's not going to change, even as my circumstances change, I will always have the story.

I hate sympathy and telling sad stories, I like to talk about other stuff. My story usually elicits some confusion and sometimes sympathy, depending on how I tell it. When I say I had an overactive thyroid, most people don't really know what that means. I can choose to give a basic overview or go into the particular effects it had on me and my life. When I do this I begin to feel like I'm eliciting sympathy (or not making sense) and it's around this point where I wish the story wasn't true...and most definitely wasn't mine to tell. One of the most frustrating things though, to be really honest, is that people just don't 'get it'. How could you really understand unless you'd been there and seen it first hand or experienced it?

Being so seriously ill was truly my own personal experience of hell, I reffered to being in my own personal hell for many many months. It was the worst time of my life, the hardest time. I don't want to get all optimistic right now, cos I am over that for today, but it was also the hugest learning curve of my life and I am really grateful for that- there have been many blessings in the disguise of illness. Unfortunately I feel unbalanced because I so often share the positives and I feel like I am not being honest to myself when I focus on the light rather than allow the shadow some air time. People like to say 'be positive' and they also like positivity in general; well I am! But sometimes you can be way too positive and everyone thinks you're more well than you seem. I always do my best to come across as well as I can, to be as positive as I can, to be as happy as I can. 99% of the time this works for me and I prefer this approach; but it needn't be at the detriment of not acknowledging the crap or not fully allowing those close to me to see what my true experience of this illness is.

If you've had a similar experience to me please do leave a comment. Also, if you have never had such an experience, your thoughts are much appreciated- I won't hold good health against you :-)

On a brighter note, you might enjoy my new web-site Inner Beam.


  1. BEYOND agreeable! I posted yesterday, almost same thing, just condensed! Im AZchic on thyroid board. Im just so sick and tired of saying im sick and tired. Hard to explain how crazy it sounds when i say im just to tired to lift my hand up to drive!! As of now, im on Methi. and i go to doc in 2 weeks, i know i am hypo. and i am going to just beg for a lighter dosage! as a complete athlete, almost a trainer, i lost it all 5 months ago! working so hard on achieving my goals just to watch it go! I understand the whole "do i tell the story again" do people think im just stretching the truth?? I wish i could talk to someone everyday to someone and with theirs an mine progress. I am wicked scared of RAI and Surgery! So tired of questioning WHY ME over and over in my head... i gained 12 lbs in less then a month! i am not so worried about the weight, but more the muscle that i so eagerly earned. But, the only reply i get from others is,, oh you could afford to gain a little weight!!! you still look small! how would they like it if i told them "i know you lost income on your job, but you stil earn enough to support yourself" I earned all that hard work, which was potentionally going to be my job--a a 42 year old, i was invited to try for bikini competitions, which not sure i would of done, but none the less. Im not bragging, im simply just hurt that life just changes so quickly! I am thankful im alive, but sometimes when i go into my "graves coma" as id like to call it, i wonder if i will ever be better. i actually plan on the times i take my meds, if i have plans durning the day, i hesitate and take pills a bit later.. fear of falling asleep!
    Is that all that you have done, is ATD? or did you do RAI or anything else?

  2. What a wonderful blog post. Thank you for writing it, I could relate completely to just about everything you shared.

    I have Hashimotos (autoimmune thyroid disease) and have also recently had to give up my job because of it. In my case I'd been working for 20 years and my work has always been quite a big part of how I identified myself.

    I was out the other night, first evening out in months as it happens, at the London Blog Club (very cool event organised by soome very cool people, I was very chuffed to be invited) and I found myself having the sort of conversation you describe with two guys at the bar. They asked me what I do and I found myself telling them I was on a career break and then feeling the need to explain and then starting to feel a bit awkward to be talking thyroid symptoms with strangers (who happenned to be very good looking, cool boys so extra embarrassment factor for me!) then feeling the need to explain how I'm spending my time now, obviously it was relevant to talk about the blog as that was why we were all there but it's such a personal topic to blog about, my thryoid, that it felt a bit odd to be discussing it with people I don't know and who are not thyroid people and then I was trying to put this positive spin on the whole situation and almost trying to justify what I was doing with my time when I don't have a job "oh I'm doing some stuff for this thyroid charity and oh this and that, blah, blah..." they were really sweet about it and saying how great it was that I was responding so positively to a difficult life experience and I found myself saying "yes I'm trying to treat it as an opportunity and be open to it, it's all good and doesn't need to be the end of the world" and then we were all a bit tongue tied. "The end of the world" I can't believe I said that!

    But then it's all still so new and in one way it is the end of my world as I knew it. for so long having a cool career has been a big part of how I've defined myself and now I'm on a totally new path. It is genuinely exciting, I embrace change, I'm loving not working, I'm not so ill that I can't do anything at all and my adorable husband is supporting me. I'm doing some really interesting and nice stuff with my time off, when I've got the energy to, but I'm also slightly scared shitless by the whole business as well.

    It's so nice to be able to connect with others experiencing similar stuff. Your blog is ace. I look forward to reading more and would be honoured if you would check mine out sometime too:

  3. Hi Julie and Hope thanks for your comments, so great to have you share here. Julie I actually wrote a fairly lengthy response here, but now I can't see it, so I guess it didn't work- I'm sorry about that.

    My hyperthyroidism was actually caused by drinking bonsoy (see There were very unsafe levels of iodine in the product and many people in Aus have become unwell as a result. My treatment has been to take neomercazole (up to 12 tablets). I have just come off them as I have been hypo for around 6 weeks now (yuck).
    I can highly reccomend you check out for info on how she healed her autoimmune thyroid disorder (has had both hypo and hyper). Reading about her journey has helped me alot.
    Hope I so hear you on 'the positive spin'; as it comes out of your mouth you hear it and want it to stop, but it doesn' you plaster on the smile and do the hopeful thing. Well isn't our story depressing enough without us adding to that with frowns, tears or pessimistic thoughts? ...and how inappropriate would that be at a BAR etc.
    I have checked out your blog Hope and enjoyed it, I shall return to read more thoroughly in future.
    Wishing you both much courage to do whatever it is you need to do to support yourselves on all levels and nurture your self for healing. Please do stay in touch here, let us know how things go and what changes occur!


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