Pieces of Me – Living with an invisible illness (or two) Update

Pieces of Me - Finding Peace Living with an invisible illness Agent Mystery Case

Pieces of Me - Finding Peace Living with an invisible illness Agent Mystery Case

 

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.

 

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“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.”

 

 

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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?!

 

High Tea Review

 

Anyone was keen to join me?

 

Now enough of the health issues and on to having fun, fun, fun….

 

Mystery Case signature

 

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 sponsorship inspiration.

 

Linking up with I Must Confess for the Blog Exchange ‘Blog like there’s nobody reading‘ challenge.

About Mystery Case 381 Articles
Managing Editor of Agent Mystery Case. Follow Raychael aka Mystery Case on her mystery adventures 'casing' people, products and places to bring you her worth casing favourites.