I have a fantastic guest post from Marie-Louise Pawsey from Australia! She is a lifestyle and dating coach from Down Under. All her social links for you to follow her brilliant blog are included below!
Marie-Louise also has Graves Disease, like me – here she tells her story of how she got diagnosed and what life is like now.
So here it is – Graves Disease: Australian Style!
Ten years ago, I was a newlywed. I’d met the man of my dreams a couple of years before, and we were fortunate to be living in Melbourne’s CBD in an apartment, unlike most of my friends and family.
During our first year or so, I’d had some issues with my eyes. I couldn’t explain it properly but they were sore, and I had vision issues. All my life my parents had gotten their eyes checked regularly; both wore glasses and my mum had had cataracts. So, I’d been getting my eyes checked every year since I was a teenager and I knew something wasn’t right. We weren’t living near my usual optometrist, so, I made an appointment with an optometrist nearby.
I was pretty much told that there was nothing wrong, but I knew there was, so I went to a second clinic, and was told a very different story but it still didn’t seem to really account for the issues I was having. Ugh!! So, I figured, I’d get a tie breaker, and went to a third. There, I was told that I needed glasses and they’d be prism lenses. I’d never heard of such a thing, but as I’d now had three very different stories, I did a fairly dumb thing, and I ignored them all. I battled on and just went about my business, planning my wedding, and my future. It’s amazing what you can put up with if you put your mind to it.
Six months later, we’d just moved into our new house. Within weeks I knew something was wrong. All the weight I’d been trying to lose in the leadup to our wedding was suddenly falling off, and I couldn’t figure out why. We’d moved from a one bedroom apartment to a three bedroom house, but I didn’t think that the extra walking around as I unpacked could have made such an impact. I didn’t even have much time to exercise since I’d given up the gym which had been in our apartment building, and now I had to commute 45min each way for work. So how was I shedding weight?
I started taking notice of everything. My appetite changed, I couldn’t sleep, but had heaps of energy, my heart race seemed to be that of a thoroughbred even as I woke in the morning, and I couldn’t concentrate on anything. And my eyes seemed to be getting worse all of a sudden.
So, I made an appointment with the GP I’d gone to for years- now that we were back in the area in which I’d grown up.
He’s amazing. I told him my symptoms and he immediately sent me to have blood tests to have my thyroid checked.
Within a week I was at an appointment with one of Melbourne’s leading Endocrinologists and the diagnosis was clear: I had Graves Disease.
When we’d moved, I’d taken a week off work to unpack, and during that time, I’d dropped in my old gym boss who had, on the spot, offered me part time work as a personal trainer. It was fine for a little while, but my diagnosis meant that I couldn’t demonstrate exercises I wanted my clients to do, or workout alongside them. So I had to adjust by demonstrating once, and then issuing instructions to them verbally. I also had to explain to them what was going on with me, which was scary and revealing, as I didn’t fully understand it yet.
I found I could eat anything I wanted and not gain weight, but I didn’t have much of an appetite. My husband had to beg and plead for me to eat, and sometimes he’d resort to spoon feeding me. Looking back, I’m sure that there were times when I was determined to put the surprise weight loss to good use and capitalise on it. Other times I gorged on chips and chocolate, revelling in the idea of not gaining weight. I was all over the place, mentally and emotionally.
But as the 15 tablets a day (14 x neomercazole and 1 beta blocker) kicked in, that all changed, and all the weight I’d lost came back with a vengeance. Alas, the snacking habit was a hard one to break, and it’s still one I battle now.
I also experienced trembling legs, increased bowel functions (spontaneously at times), anxiety, intolerance to heat (and I was diagnosed in summer so that explained why I complained more than others did!), erratic sleeping patterns and a myriad of eye problems that effected my work, driving and leisure time.
I’d gone to my original optometrist about my eyes and he’d recommended an ophthalmologist who diagnosed Thyroid Eye Disease. That explained a lot! The problem was that it meant that I’d need special glasses, (prism lenses, can you believe it?) and until they could get them, I wasn’t allowed to drive. I was the sole driver in the family, so that threw our whole routine out. We could no longer visit friends and family on the weekends if it meant driving and our shopping had to be done locally. All of this was a massive adjustment for us, and it caused a great deal of cabin fever for a couple who was used to going to the country every few weeks and being able to do normal day to day activities without restraint.
Not driving was a really good idea too, because despite being back in my old neighbourhood, I suddenly had memory problems. I found, and still find, that I could drive to the same place two days in a row, from the same starting point, and I’d get lost on the second day. I can envisage where I have to get to, and I know where I am, but can’t figure out a way to go, and even if I do figure it out, I’m uncertain about it. Google maps has become a very handy tool for me, but road works and detours completely throw me.
That’s okay now, but back then, I worked at night and drove across town to work. Fortunately, my boss was willing to adjust my hours, so I worked 4 longer nights a week, and was able to get there by train. This meant walking to and from the station, and anywhere else, which added a little more exercise into my routine.
I’d increased my exercise output, but was constrained to walking because I wasn’t allowed to get my heart rate up. I was never really able to convey the fear I felt about having a heart attack. I wore a watch with a pulse monitor and checked it repeatedly, but even when I wasn’t wearing it (in bed, in the shower) I could tell when it was high because my heart would race and then seem to stop. Ten years later, I still have those palpitations and when they become too regular, I go and get checked again.
I began walking 2-4 hours a day. It was one thing that helped me feel as though I had some control over the disease. I really put a lot of effort in, and changed my diet after seeking the help of a nutritionist.
I viewed some of these lifestyle changes as adventures. Certainly, going to work for 4 days was a nice change, and my increased energy meant that I didn’t struggle to work those 12 hours in a day. Seeing the world through a train window gave me new insight into those around me. But those things, I could take or leave.
Inside, however I was changed forever. I determined that I wouldn’t see myself as a victim, but went about making the necessary changes, and following instructions from my doctors.
Along with my endocrinologist, I had my optometrist, ophthalmologist, nutritionist, GP, and later I added a fertility specialising gynecologist. I did the rounds regularly, and it was an emotional and costly venture. The endo appointments need to be paid in full on the day, but are then reimbursed in part by Medicare. The appointment cost around $120 and I’d get about $70 of that back, if I recall. But that meant going to a Medicare (in the early days) office to lodge and claim. Those offices aren’t everywhere, so I’d tend to build up a few claims and do them all at once. So this meant that I was out of pocket all the appointment money until I could get to an office.
In Australia, not all tests are covered by Medicare, and it also depends on which doctor you go to, as to whether your appointment is bulk billed or not. Bulk billed means it’s free for the patient, but other places charge, usually $30-$60. When you factor in appointment costs, on top of medication costs, my extremely expensive glasses, money spent on healthy food, public transport when I was using it etc, all added up and my new life was costing me a small fortune.
One such instruction that my endo issued was that we had to put our baby making on hold. We’d planned to move into our house, live there for a year or so to get used to married life, and then start having babies.
We were told that that plan was on hold until I was told otherwise. That was heartbreaking for me. I wasn’t someone who’d yearned for babies all my life, but now that I’d found my husband, I was keen for them.
Except that was a decision which was taken out of my hands.
For three years, I took my medications, walked and walked, ate, and managed my illness as well as I could, and finally, I received the news I wanted to hear: I was in remission.
I didn’t realise at the time, but I’ve been experiencing anxiety for a long time now. I’ve always been organised but wouldn’t have said I was a control freak, but now, if plans change too greatly, the effect on me is immense.
Over the years, I’ve realised that the disease has flipped my life completely, and if I could control anything- when the disease controlled me- it gave me a sense of balance. But there really is no balance. The disease is in control, and in some ways, the sooner I realised that the better. It wasn’t going to adjust to me, so I had to adjust to it.
But along the way, it robbed me of so much, and that’s something I struggle to accept, even today.
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