I must confess, it’s been another week of struggling and light bulb moments health wise but I want to point out that this isn’t a whinge fest or a pity party just me sharing a little snippet of this side of me together with a new focus for the blog.
I’m not normally one to share this side of things publicly and prefer to keep the majority of my health posts under lock and key via a sealed section on the blog where the community is closed, supportive and understanding because I appreciate this side of me isn’t for everybody.
Pieces of Me – Living with an invisible illness (or two)
I’ve been inspired by Nikki Parkinson from Styling You who shares the same thyroid condition as me who recently posted an update on her health with some light at the end of the tunnel options that might be worth exploring for the thyroid side of my health equation.
It was Nikki’s comments “My condition isn’t life-threatening, it’s life-limiting but I know that the greatest lesson it’s taught me is that I know my body better than anyone else” and “I’m a mum, a wife and a business owner. I’ve just had to get on with this thing they call life.” that resonated with me the most.
Unlike Nikki, my diagnosis is fairly new as is my treatment plan. It’s a constant work in progress and I also have another condition causing havoc with my health which impacts how I approach just about everything at the moment but that doesn’t stop me getting on with things. Far from it. I just need to be more inventive in my approach.
It’s hard to explain just what I’m going through, so most of the time I just don’t go there but I stumbled on a letter courtesy of Thyroid Sexy‘s Facebook page which articulates just what I’m dealing with as far as the thyroid goes.
Something that is, according to my specialist, the least of my worries which is possibly why I tend to keep things under wraps, not even sharing this side of things even with family (unless things are really bad and I’m needing help) for fear of looking and sounding like a hypochondriac. Why, I only need to fill in my medical history form with a new specialist for that.
I’m sharing the letter in full below and while the entire letter resonates with me, I’ve highlighted the parts that resonate the most.
“Hi. My name is Hashimoto’s. I’m an invisible autoimmune disease that attacks your thyroid gland causing you to become hypothyroid. I am now velcroed to you for life.
Others around you can’t see me or hear me, but YOUR body feels me. I can attack you anywhere and any way I please. I can cause severe pain or, if I’m in a good mood, I can just cause you to ache all over.
Remember when you and energy ran around together and had fun? I took energy from you, and gave you exhaustion. Try to have fun now.
I can take good sleep from you and in its place, give you brain fog and lack of concentration. I can make you want to sleep 24/7, and I can also cause insomnia.
I can make you tremble internally or make you feel cold or hot when everyone else feels normal.
I can also give you swollen hands and feet, swollen face and eyelids, swollen everything.
I can make you feel very anxious or very depressed, too. I can also cause other mental health problems.
I can make your hair fall out, become dry and brittle, cause acne, cause dry skin, the sky is the limit with me.
I can make you gain weight and no matter what you eat or how much you exercise, I can keep that weight on you. I can also make you lose weight. I don’t discriminate.
Some of my other autoimmune disease friends often join me, giving you even more to deal with.
If you have something planned, or are looking forward to a great day, I can take that away from you. You didn’t ask for me.
I chose you for various reasons:
That virus or viruses you had that you never really recovered from, or that car accident, or maybe it was the years of abuse and trauma (I thrive on stress.) You may have a family history of me. Whatever the cause, I’m here to stay.
I hear you’re going to see a doctor to try and get rid of me. That makes me laugh. Just try. You will have to go to many, many doctors until you find one who can help you effectively.
You will be put on the wrong medication for you, pain pills, sleeping pills, energy pills, told you are suffering from anxiety or depression, given anti-anxiety pills and antidepressants.
There are so many other ways I can make you sick and miserable, the list is endless – that high cholesterol, gall bladder issue, blood pressure issue, blood sugar issue, heart issue among others? That’s probably me.
Can’t get pregnant, or have had a miscarriage? That’s probably me too.
Teeth and gum problems? TMJ? Hives? Yep, probably me.I told you the list was endless.
You’ll be told to think positively, you’ll be poked, prodded, and MOST OF ALL, not taken seriously when you try to explain to the endless number of doctors you’ve seen, just how debilitating I am and how sick you really feel. In all probability you will get a referral from these ‘understanding’ (clueless) doctors, to see a psychiatrist.
Your family, friends and co-workers will all listen to you until they just get tired of hearing about how I make you feel, and just how debilitating I am. Some of them will say things like “Oh, you are just having a bad day” or “Well, remember, you can’t do the things you use to do 20 YEARS ago”, not hearing that you said 20 DAYS ago.
They’ll also say things like, “if you just get up and move, get outside and do things, you’ll feel better.” They won’t understand that I take away the ‘gas’ that powers your body and mind to ENABLE you to do those things.
Some will start talking behind your back, they’ll call you a hypochondriac, while you slowly feel that you are losing your dignity trying to make them understand, especially if you are in the middle of a conversation with a “normal” person, and can’t remember what you were going to say next.
You’ll be told things like, “Oh, my grandmother had that, and she’s fine on her medication” when you desperately want to explain that I don’t impose myself upon everyone in the exact same way, and just because that grandmother is fine on the medication SHE’S taking, doesn’t mean it will work for you.
The only place you will get the kind of support and understanding in dealing with me is with other people that have me. They are really the only ones who can truly understand.
I am Hashimoto’s Disease.”
While I’m grateful that after almost two years of
throwing money down the drain testing and suffering we finally have a confirmed diagnosis and treatment plan for this side of things, it’s very much a one day at a time approach. I’m forever trying to find ways to manage and approach life within my limitations. Some weeks are better than others BUT I’m far from being a complete write off and Nikki from Styling You and her approach to her health is a constant inspiration in this regard.
BUT like I’ve said before, the thyroid issues really are the least of my health worries. It’s the other side of things that given the right circumstances ie. me not doing all the right things, that has the potential for things to become not just life-limiting but life-threatening which has me determined to be the healthiest version of me that I can possibly be.
It’s probably one of the biggest reasons why I will be looking to change focus on the blog. You could say ‘out with the old and in with the new’ but for some of it, it’s more a case of revisiting some of the old and making new again.
Rest assured the health side of things isn’t making a big public comeback. This side of things will remain, for the most part, under lock and key. I really don’t want to be accused of whinging and having you all running for the hills now.
With my business diploma kicking off this week, I’m looking at the blog and my schedule in general with new eyes. Tired and weary eyes, that just want to get back to having a whole lot of fun here on the blog together with building on the momentum and community already establishing itself through the Blog Exchange initiative.
With this in mind, I’m thinking of re-introducing my guest blogger high tea reviews. Because.. high tea. Right?!
Anyone was keen to join me?
Now enough of the health issues and on to having fun, fun, fun….
Please remember, this isn’t a pity party. With that in mind, how about you share with me how you celebrated your last birthday? I’m turning 45 this year (shh don’t tell anyone) and I was thinking something special might be in order and I’m looking for
Linking up with I Must Confess for the Blog Exchange ‘Blog like there’s nobody reading‘ challenge.
If I go to high tea, I’ll let you know – but I love the idea night idea! And I’m sure your friends aren’t thinking it’s in your head. They’re your friends, remember!!??!!
Actually, you would be surprised. I actually had a friend question my illness. I suppose like everyone else, I only let people see me when things are manageable and the war paint aka makeup tends to mask things.
Then you need better friends….
I love high tea – I would have it for breakfast, lunch and supper. I think sharing about your health is important, because you’re just keeping it real. I neither think you’re whining nor will I be running for the hills. On the contrary, I’ll be sticking around, because this has nothing to do with being ill, but everything about your quest for wellness and a better quality of life. More to the point, not only will these posts helpful to you but I bet they’re going to be of great benefit to your readers, because those who don’t know about Hashimoto’s etc will be better informed, and those in a similar situation will feel better supported.
Thanks Sammie. I love high tea too. Looking forward to catching up with you over high tea in Sydney later in the year. I can’t wait. You will have to suggest a couple of venues in the meantime, so I can put some feelers out.
Yes, drop me an email to remind me and I’ll put my thinking cap on!
Thanks for being so honest Raych, that must have been difficult. I’ve worked with people who suffer from chronic pain/illness, and the amount of medical professionals and friends/family that disregarded their symptoms and made them feel silly and attention-seeking was astounding. I’m glad you finally have a diagnosis, and sending all my positive vibes your way xx
Thanks Jess. I do worry that by sharing people will think I’m attention seeking but that’s not my intention at all.
I think your intention comes through well…and anyone who think it is attention seeking needs some empathy training (and a swift kick up the backside)
I believe that blogging about our health, particularly chronic conditions is important as it makes others feels less alone, as Nikki’s post helped you to feel less alone and more hopeful. I know that blogging about depression and domestic violence has helped many of my readers feel connected and hopeful. I hope you get Hashimotos under control and can keep getting on with life.
Thanks Dorothy, I completely agree.. although this side of things is rather removed from what I want to be blogging about or what my current audience come to expect.
The Hashimoto’s disease really is just a small part of what is going on but it all adds up.
Sending you hugs in support that you find some peace and treatment plans work well for you to be your best self.
I love a high tea. A high tea has to be one of my most favourite things to do.
Take care and look after you. Hugs. V x
I’m hoping to put a high tea catch up on the agenda for my mystery tour to Sydney which is looking like it might happen mid October. Hopefully you can join me.
Like I said before I sincerely hope you’re able to find something that works for you despite all that letter says. You always seem to be pushing yourself to do more. I don’t mean to sound patronising but please look after yourself as well. Thanks for sharing and starting the group. xo
Thanks, I think pushing myself to do more is part of who I am and I’m definitely getting better at stepping back and picking and choosing my battles and saying no more often than I would like. No wasn’t a word in my vocabulary prior to this, so it’s been a good lesson to learn.
Raychael – did you know I have hashimoto’s too? It was diagnosed after I had all my kids. Symptoms were eventually managed ok (though I was never at normal energy levels) but things have gone haywire of late. I too also have another condition now which has made things much worse. I have decided that the first thing I must do to help myself is get lots of weight off me (both conditions have caused rapid weight gain over the last 6 months or so). Getting weight off me is not easy. I had tried everything and could not lose any – so I did some research and I’ve found a way. I’ve lost 7.1 kg’s since I got back from Tasmania. How I’m doing it is not easy but it is working. Contact me privately and I can tell you more if you’re interested. In the meantime, try and take it easy a bit coz stress just makes everything worse *sigh*! BTW – I don’t understand why anyone would run for the hills when someone blogs about health because that’s life and real and I’m sure there are many who can relate! Nikki has also been an inspiration to me with her health updates. She’s really got things together hasn’t she – she is looking fantastic!! 😉
I’d like to say welcome to the club but it’s not a great club to be in. Getting weight off is not easy for me either. It usually is but the latest meds and the second condition had me pilling on 10 kilos over a year and I was only having green smoothies for breakfast, lunch and dinner (nothing else) because I lost the ability to actually eat without choking.
Sadly, a couple have run for the hills after my last health share but then again, they weren’t here for the health side of things and I get that.
Will definitely touch base. I’m super keen to hear what is and isn’t working for you.
Bad timing. I have moved! In Melbourne and before that, Sydney, I knew all the places to go and have High Tea, but never got there. Now I am in a country town, I am not sure anyone does High Tea! I might just put one on myself, or make a trip to the city. Looking forward to seeing where you go, health wise, and blog wise. Hope it is all that you wish for and more.
Thanks Kate. We use to live in Crows Nest but we’ve had 22 moves and now in Perth. I was only just in Melbourne for the Voices 2015 masterclass as well as a blogging Melbourne mystery tour the previous month. I do have a blogging trip to Sydney on the cards and hopefully will organise a high tea while I’m there.
Thanks for sharing something so personal to you Raych! We don’t pity you but are hear to listen whenever you need to write about it. It takes courage to openly talk about health issues — physical and mental. I sincerely hope your conditions are manageable soon and you are able to live your life the best possible way. Sending you a whole lot of good vibes!
I suppose I could make it all the way to Perth for high tea…I’ve been wanting to visit WA for ages in any case! 🙂 Sounds like cool plans for the blog too. Take care of yourself xx
If you do plan a trip to Perth than a high tea catch up is definitely in order.
Appreciate you sharing this intensely personal post and learning more about a condition I know nothing about. I hope the diagnosis and treatment plan is effective and you can manage the symptoms in a way that allows you to get more out of life.
I seriously can’t remember what I did for my birthday last year . . . I think we did our regular fortnightly dinner at my father in law’s place . . . nothing special.
Thanks Beth. I’m always in two minds about this side of things but as I challenged everyone in blog exchange to blog like there was nobody reading, it was only fair that I also took on the challenge.
I admire your courage to share your personal trials Raychelle. It’s not easy. I also admire your strength in pushing on and living life with constant ‘adjustments’. I find you inspiring. Xx
Thanks Sandra. I haven’t felt very inspiring lately but I’m more determined than ever to just get on with things, well as much as I can.
I hate the invisible illness thing as well. I have three autoimmune diseases which is kinda annoying.
As for my birthday… I think my mum overnighted and we went to brekkie and I cooked myself a nice dinner.
Three, gosh I’m struggling with two, although one is autoimmune and the other is suspected motor neuron. It’s a wonder you can function at all. Hibernation looks inviting but it doesn’t help matters in the long run.
I know for me and the autoimmune side of things, finding the right diet and sticking to it, helps immensely. I’ve been experimenting with a variation of the leaky gut diet.
Another invisible illness of depression is one so many get sick of hearing too. Your post was inspiring.. You’re inspiring… Big kisses
Thanks Natalie, I’m not feeling particularly inspiring but somethings are better out than in.
You are now on a path to wellness and learning… Yay! As you know birthdays are super important to me, this year I had lunch with a group of friends, afternoon yea with friends then dinner and a movie with the family.
I can’t actually recall a birthday celebration apart from my 5th. Time to do something about that.
Hashimotos is brutal. And to think that’s not the worst of what you are dealing with…
I would LOVE to share high tea with you if we could organise to be in the same state at the same time!
Yes, high tea is on the cards. I’m trying to organise a blogging mystery tour to Sydney mid October. Hoping that things fall into place and we can meet up.
I love an honest blog post. I don’t think telling your story is a pity party and it certainly doesn’t sound that way. I would be pretty pissed off with many of those symptoms and soooooo frustrated by how much it impacts your life. It sounds hopeful now you have a diagnosis and hopefully a plan of action for the road ahead. All the best. Bron x Ps- I love the idea of high tea…maybe the next time you do a forty hour sleep deprived visit to Melbourne? Haha.
Next trip to Melbourne will be a leisurely one, so it’s a definitely yes to catching up over high tea. Would love to meet you.
Oh thank you! Likewise. Can’t wait to meet in person. xo
Great post. I’m another fan of sharing, because often we get the best advice from each other! I also have hashimoto’s on top of a host of other health problems, including the ones you’ve mentioned. I do wonder which is the major one that causes all the other problems, many of which are auto-immune. Of course there is depression in the mix too. When my thyroid problems were first picked up about 14 years ago I was put on thyroxine for several years – but now because of the hashimoto’s the levels are up and down and my doctor prefers not to medicate me because otherwise my body is always trying to correct itself, which screws my body up even more. So we just keep an eye on it and I try to take care of myself. I also love the idea of a high-tea … might have to be a virtual one for me though!
We really should start a Hashimoto’s disease club. It’s great that you are not being overly medicated now.
You’ve got me thinking about a virtual high tea party. I wonder if something like that is doable? I huge around the country high tea linked up over skype.
I have had half a mind to question my depression/anxiety condition. I have been thinking the worst with thyroid and hormone conditions. Upping my depression meds has helped. I hope there is something that can make your conditions more manageable. Talking about it does help a whole heap of other people than just yourself, obviously in Nikki’s case, and yours too. I was not aware of your condition, and this just makes you more amazing as a person with what you have to deal with xx
Thanks Alicia, hope your get your depression and anxiety meds working for you and not against you. Perhaps try a different doctor and have a review.
This is such an interesting read Raych. Firstly, I am so sorry to hear you are going through this, but I am happy to hear you are taking your power back and pushing through it. My cousin has Hashimoto’s Disease and you’ve just helped me to understand it that little bit more. I totally understand that you don’t want to give it energy. My blog post today about my “depressive tendencies” is also a post about not wanting to give it energy in my blog space. But sometimes we’ve got to do it to (a) be authentically us and (b) to help empower others who are also living with health challenges. Thanks for sharing!
It will consume you, if you let it and do your head in, in the process. I’m a control freak from way back, so it’s the lack of control that I have over this and my body in general that kicks me in the guts the most.
Somethings are better out than in.
What a great post, it really explains what it’s like to live with Hashimoto’s for those of us who are clueless. And, I celebrated my last birthday with a high tea with my friends but it sounds like you already do that on a regular basis!
Actually, I’m only just eating real food, after 12 months of green smoothies. So while I’m putting high tea back on the agenda for reviews and catch ups, they will be few and far between and saved for special occasions. I honestly have no idea what I want to do for my birthday, I just want it to be special, for once.
Thank you for sharing. I have actually not heard of this condition before, so it was really informative.
I don’t like celebrating my birthday, but am excited for my daughters 5th birthday in October, we will be taking our first family ‘mini-break’ to sydney 🙂 xx
I usually don’t like celebrating my birthday either. Not sure why, but determined to actually mix things up this year.
I was aware of your thyroid problems … no fun raych! … but hoping the wholefood regime helps, even though each case is different! at least it is a starting point where by you can be in control!
all the best with your course too and new blogging formula!
much love m:)X
It certainly makes life interesting. Thanks for the love.
I was at a conference on the weekend and one of the speakers was talking about her long term battles with Hashimoto’s. I hadn’t a clue what it was besides the name before then so with this post it must be my time to learn.
Your high tea sounds fabulous and I am sure you will get lots of Perth bloggers jumping at the chance.
I was diagnosed 6 months and apart from being told what tablets I needed to be taking there really wasn’t much else thrown at me as far as information on the disease. It’s been a big learning curve and that letter really does sum things up.