Living With Graves Disease

health & wellness Jan 07, 2015

Imagine having all the energy in the world. Imagine having everything you always wanted. Your own home, an investment home too, a husband, an emerging career, a cat, a car with no finance attached and a couple of good, close friends. Imagine being able to work 3 jobs, sometimes all in one day and still have energy when you get home to pursue hobbies. Imagine being able to eat whatever and however much you liked, without gaining a single kilo. Imagine crashing and burning like a failed rocket launch at a rapid speed and completely and purposefully smashing your life to pieces. This is the story of my Graves Disease.

Things were pretty darn good in my life. I had accomplished a lot in my early 20s including getting married, buying two homes, completing a university degree and adopting the most adorable cat in the world. I had an abundance of energy that never seemed to run out. I literally worked 3 jobs on top of uni and continued to work at least 2 when I began teaching in 2005. I loved to work. I loved the money and the freedom that came with it.

In 2007, my husband and I bought our dream house and sold our original home. It was a dream come true. We were so excited to be moving into our “forever home” and eagerly packed up our things and put them in storage at my grandmother’s house. We temporarily moved in with my father in law and I could probably pin point this as the first time I had felt a little different. I was consistently sleeping for up to 10-12 hours a night and my weight had plummeted from 59kg down to 51kg. I didn’t realise at the time how thin I had become. I was also working full time at this stage, as well as juggling a job in direct sales so it seemed natural to me that I would be fairly exhausted. I would literally get home, eat dinner, have a shower and go to bed.

Once we moved into the new house, I was just as busy as I always had been and loving it. But moving and settling into the house didn’t go as smoothly as I thought. I was becoming more and more aware of something that had been happening for a while, right under my nose but without realising what it really was. I was being name called, put down, ridiculed, the butt of jokes and the recipient of body language that was so very subtle but so very hurtful. Oh my God, was I just being sensitive? Or had this been happening the whole time? Seriously? I would retreat and hide and cry in the shower so that no one could hear me. Then face it all again and again - worse when we were around his friends.

My heart would race like i’d run a marathon and my breathing would pick up until I was panting. Then it would skip beats, almost like it had paused just for a second and my whole body would jolt. I was holding fluid in my feet and legs that was so absolutely gross that I was disgusted in myself.

Of course I should have known that I was in an emotionally abusive relationship. I’m an educated woman. But when you’re right in the thick of it, and you have no physical outward battle scars to get your attention, it’s almost impossible to know for sure. It's like being in a fog. But I was so miserable. I would react with a hundred emotions all at once when something felt unjust or unfair. I was suddenly having a very strong and emotive voice.

I could love, fight back with my words, cry, scream and laugh all within one 5 minute argument.

Then suddenly, my body wouldn’t cope and my heart would start beating at what felt like a million miles an hour. Heart beating, sweat pouring, breath panting and having irrational thoughts. Was I reacting to being hurt? Or was something really wrong with me?

This didn’t just happen at home though. At work, I’d always been quite a resilient person and got along well with all the teachers and students, but there were changes there too. Some of the staff would look at me strangely, or were they? Did they think I was doing a bad job? Oh God, they think I’m a terrible teacher. I’m annoying them. The kids are whispering and it must be about me. With each little piece of anxiety and panic, came my fast heart beat, sweating, nausea from worry, then often diarrhoea or vomiting as a result; and panting breath, like I’d run a race.

Then suddenly, one day after some not very nice text messages from my husband and a few looks from others at school that I’m sure weren’t good, I locked myself in the storeroom of the classroom, lathered in sweat, breathing furiously and ripping my clothes off at a rapid rate. I was being constricted and they were closing in on me. I was trapped in my own body and I couldn’t breathe.

At that moment, the strangest thing happened. My mum turned up at school, in the middle of the day, unannounced. She had never come to my work before. I was a complete mess. Apparently, the bloods I’d had taken a week or so back at the doctor’s had indicated that my thyroid was overactive and that my heart was under a lot of strain as a side effect from it. I was experiencing a thyrotoxic crisis or a ‘thyroid storm’ which is pretty much as bad as it could get and extremely dangerous. She had come with medication for my heart and she made me swallow them straight away. Without medical intervention at this critical point, I was in danger of having heart failure, at 23.

The weeks that followed were some of the hardest and darkest of my life. I had been formally diagnosed with Graves Disease; an autoimmune disease where my own immune system had begun attacking my thyroid gland, causing it to produce too much thyroxine, which is a hormone.

As I began my treatment (much to the disgust of my husband, because surely there was nothing really wrong with me – it was all in my head) my symptoms continued to come in waves, unbelievable hormonal highs that would pump me up and cause my heart to beat fast and irregularly; in excess of 120 beats per minute - resting. It would make me sweat and intolerant to any heat. I couldn’t sleep and my hands would shake with an old lady like tremor that I couldn’t stop, despite willing myself to do so.

The anxiety that I continued to develop would make me feel so sick I’d have diarrhoea. All of these things made me very moody and irritable all. the. time.  

Once these symptoms passed I would become bone-chillingly cold and need to rug up and I’d shake. My heart would beat irregularly, but never below 100 beats per minute. These lows would leave me so exhausted I’d need to sleep and rest for up to 15 hours at a time. I became vacant and empty and I preferred to be alone most of the time.

My heart tablets were causing me to see all sorts of disturbing things at night, like people who had died, kneeling down beside my bed and watching me sleep. Or dead people walking past the end of my bed and out the door into the hallway.

Surprisingly, they didn’t frighten me. I just honestly thought I was losing my mind. I was taken off the heart medication straight away and my doctor confirmed that a small percentage of patients experienced hallucinations while taking that drug.

The thing that surprised me the most, was my inability to feel or show any emotion. After a few weeks of treatment, I wasn’t able to cry, feel upset or anxious in any way. I was able to see everything around me without cloud or fog. Just raw and in black and white.

I left my husband some months later. It was hard. But it was right. My heart hadn't been in it for a long time. The process of losing my house and belongings hurt worse than anything else. It was a long process.

My treatment for Graves Disease lasted 18 months in total and as the months progressed, so did I. During this time I was gaining weight (a little too much actually), feeling less anxious and I fell in love with the most amazing man I’ve ever known. Of course, there were still the odd bouts of symptoms, but nothing that lasted long enough to be too intense. Having Tim’s love, patience and support is what really pulled me through.

Yes, I still suffer from some mild symptoms every now and then but I have regular checks. With the exception of a short-lived case of post partum thyroditis after the birth of Amelia, which settled on it’s own after a couple of weeks; I am living in remission of Graves Disease. It has been quite the journey.

I hope it’s over.