Fix my tummy, fix my head.

I’m writing a few posts about my health issues. I explain this all over and over again to friends and acquaintances, and with some big recent developments I want to start sharing the info online.

Primarily, it’s to inform people I’m lucky enough to have care about me, I’m not trying to reach a wider audience but obviously this stuff ain’t a secret. If you haven’t read it yet, please read part 1: The problem with my head.

If you wish to talk to me about what I write, please do so via twitter: @antheaw, or on Facebook if we’re friends there.

For as long as I can remember I’ve had a problem with my weight. Stemming from adolescent insecurity about a changing body and sprouting out through the rest of my life, it’s become something I live with.

Suddenly, it’s become something that concerns my health and my ability to live a full and normal life – but not for the reasons people normally associate with weight loss such as diabetes etc etc.

(Seriously, if you haven’t read part 1 yet, you really should just nip over and do that here: The problem with my head, then come back. Everything will make more sense.)

It’s funny, weight is such a hard thing to speak frankly about. We’re cultured to be ashamed of any size but the currently acceptable “normal” as if it’s some great secret that isn’t plainly visible when you so much as look at a person.

Since learning more about body positivity in recent years* I’ve become so much more comfortable in myself and in relating to others too, which includes being able to speak more freely and unashamedly about what it means to be overweight, how it affects me and others, and the fact that it’s not all bad! I no longer assume that all fat people are unhappy, are lazy, are disgusting – what horrible associations.

This makes it a hell of a lot easier to say, you know what, I’m not a completely hideous fat person. I’m a fat person, and I have many awesome qualities about me and some of those do include parts of my body.

Being ok with being fat from an aesthetic perspective is why I’ve been so offended in the past when drastic measures to “fix” myself and lose weight have been suggested. Sure, I have worked at a number of ways to lose weight in order to be more fit and better able to enjoy things in life, people of all sizes face those challenges.

Gastric bypass surgery was suggested some time ago, and I was skeptical but did some reading. I learned that it’s fairly drastic surgery that basically re-routes your digestive system and eliminates part of your stomach, it’s virtually irreversible and patients will rely on vitamin supplements and only tiny meals for life. What a horrible notion! I was so offended that I was encouraged to so drastically change my otherwise healthy body for the mere vanity of losing weight and “looking better”. With healthy test measures, there was just no reason for it.

And so I continued my life long pattern of losing some weight, feeling good, regaining it with interest and not feeling so good. I eventually came to the realisation that I didn’t want to put effort into losing weight any more as every time I tried and worked at it, I ended up larger and worse off than when I had started.

I have tried a lot of things. I’ve tried Weight Watchers (twice), I’ve forced myself to rise at 5:30am every weekday and get my butt to the gym for months while I watched what I put in my mouth very carefully. I stopped caring what a scale told me and tried to focus on how I felt.

When problems with my head were so mysterious I wondered if foods had an impact and systematically cut out caffeine, refined sugar, processed foods, meat, dairy, all animal products, gluten… I resolved to “lifestyle changes”! That were “forever”! And sure, some things made me lighter, but always, always I gained weight again, and always more than I had lost.

When my neurologist told me that I needed to lose weight to try and resolve the hypertension in my head, I didn’t hate him. He advised me to see a nutritionist but instead I thought long and hard and quietly. I thought about having gastric bypass surgery for the sake of having a life again.

I reached out to a new acquaintance who had recently posted her story of weight loss surgery bravely online, and asked her some questions. I pondered and searched online and read a lot before speaking to my family and some very close friends.

Now that I was living a half-life, crippled by migraines, and now that I had hope of help with that, the surgery wasn’t such a ridiculous idea. I spoke to my GP who wondered why he hadn’t suggested it himself. I spoke to my neurologist who lauded it the “best idea”. After reassuring me that I was unlikely to suffer any ill effect to my eyes from my condition (YES!), the opthamologist told me that bariatric surgery was an excellent long term option, and that these days they know much more about it and that patients do very well.

Lots of highly qualified people reassuring me that in my case, this (still scary) step is a good one, really helped.

After breaking the news to my parents, I was lucky enough to have their full support. My mum came to Auckland to join me at the information seminar held by the private surgeons’ office about the different types of surgery and their effects. I had decided to go ahead and have surgery on my tummy to (hopefully) fix my head.

Progress towards surgery next time, thanks for reading x

Further reading:

Part 3: Let’s do this thing

The problem with my head.

I plan to write a few posts about my health issues.

I explain this stuff over and over again to friends and acquaintances, and with some big recent developments I want to start sharing the info online.

Primarily, it’s to inform people I’m lucky enough to have care about me, I’m not trying to reach a wider audience but obviously this stuff ain’t a secret.

If you wish to talk to me about it, please do so via twitter: @antheaw, or on Facebook if we’re friends there.

Since late 2012 I have had a hurty head.

Migraines where I have to hide in my dark bedroom, often with sunglasses on in order to look at my phone or computer on their darkest setting for some entertainment. Migraines where the sound of our microwave shutting sends an explosion of pain through my cranium.

I have had up to two weeks at a time suffering from a migraine or extremely bad headache, where in the “headache” stage I can actually get up and function semi-normally while coping with the pain whereas full blown migraine just writes me off and curling up in bed is the only answer.

This is pretty disruptive to life! I have spent a lot. A LOT. of time and money with doctors, trying to find relief for my symptoms, reasons for them and treatments. The only relief I have ever found is double the usual dose of ibuprofen (the same stuff that’s in Neurofen) and Tramadol combined. One type of drug alone does not work at all, but both together bring some relief. 

I have spent a lot of money on seeing a Neurologist, whose examinations showed everything to be ok, and who prescribed different medications.

I had a great job, at the company formerly known as The Radio Network, now the Radio department of NZME. I would have many days off, many days coming late to the office as I spent bad mornings in bed waiting for painkillers to work. I would look and feel pretty rubbish but work hard to still get all my tasks completed. Some days I could work from home, with my curtains drawn and sunglasses on and phone calls conducted at their lowest volume as the sound coming from the speaker echoed pain through my head.

Fun things were given up, like concert tickets and trips away and nights out with my friends. I started hesitating to make any commitments as I had no way of predicting wether I would be well enough to fulfill them and I hated to let people down, felt like a flake and a failure when I had to send another “Hey sorry, I can’t make it, I’m not well.” text to a friend.

On the 20th of this month, it’ll be a year since I quit my job to focus on getting better. Through trying to treat the issues with my head, the depression I have struggled with for most of my life was also diagnosed and treatment for that begun. Without a diagnosis for what was causing the pain in my head however, there was still no real treatment plan.

I started working freelance, taking on a handful of hours work each month which meant only a few meetings and most of my work done from home and when I was capable of doing it. It was a massive relief to no longer feel I was expected to show face in an office every day for a set amount of time, even though my employers had been excellent about my situation.

Around August, I had a really terrible migraine which started one evening and sent me to bed early. This happens often. In the morning, when it was worse, I reached for my painkiller cocktail only to have it rejected by my body and thrown back up into the bin. This is terrifying, when the only relief you know fails for you, what can you do?

I was unable to get out of bed, but I sleep with my phone under my pillow so WAS able to call my sister, in tears, and eventually get out that I needed her to come and help to take me to the doctor. She made an appointment with my GP, dressed me and it took a very very long time to get out to the car and down to the doctor’s office.

Laying in the dark nurses office I was prepared for some sort of injectable relief, I don’t even know what it was, but my sister’s rubbing of my arm became more insistent as the nurse revealed the administering needle. “This patting is for me, not for you, that needle is fucking huge!” she told me. I didn’t care, I just hoped it would help. In fact, the way they grilled me about wether I had an addictive nature, and warned me that I may be a bit “funny” after the injection, I hoped it would give me some kind of high. It didn’t, it helped the pain enough that I was able to walk out to the car by myself and to spend the rest of the day in bed without feeling as though my head was being torn apart from the inside. Go figure.

After this episode and feeling so terrified, I pushed my GP to get an MRI scan, which my Neurologist ordered. Those things are also not cheap. My appointment was made fairly quickly and I lay in the noisy box keeping very still for what seemed like an age. I was pretty disappointed it was nothing like the MRI scanner I had seen in a TV show, which Walter Bishop used on Fringe.

I was sent a CD with some software on it and images readable by this software which show the scan of my brain. I had to dig out an old Windows computer to be able to look at it, but had no idea what I was seeing. My brain, sure, but was there anything wrong with it?

My neurologist explained that I didn’t have anything seriously and immediately wrong shown in the images but that the pressure in my head seemed elevated, and the next step was a lumbar puncture. Also known as a spinal tap, it’s a needle inserted into the spinal cord to test the pressure of fluid there and to extract fluid for testing. It’s a bit like having an epidural but they take liquid out not put it in. And I didn’t come out with a baby afterward. 

That procedure showed the pressure in my fluid was indeed elevated, though the fluid itself is normal and healthy. And so I was given the weirdest diagnosis that went something along the lines of “there is a condition that is diagnosed in the absence of any other explanation for your symptoms, when an MRI and a Lumbar Puncture indicate that spinal fluid pressure is high”. The condition is called idiopathic intracranial hypertension, and I was told it’s like having a brain tumour without actually having a brain tumour. In years past it was assumed to be a tumour until science advanced. 

The raised pressure also raises pressure in certain vessels and veins in the brain and head, including sheaths around the optic nerves which could effectively choke them. There is a risk to losing eyesight from the condition, and I really quite value my eyesight! Scary times.

So I had a label! It’s a somewhat rare label, and my neurologist explained that while the cause is unknown, the condition seems to affect mostly women in my age bracket and mostly women who are overweight, though not exclusively women, not all women who are overweight.

After two years of searching for what might be wrong with me, I did not mind being told this at all. It was a lot different to the experience I hear of often, where an overweight person visits a doctor and immediately is told to lose weight – even when the reason for visiting is unrelated or the patient shows no signs of ill health caused by their weight. 

So while losing weight isn’t guaranteed to fix the condition with my head, it wouldn’t hurt (and as I see it, would benefit in other ways too). My neurologist also surprised me by acknowledging that losing weight is the hardest thing to do and to maintain.

About that comes next.

(Part 2: Fix my tummy, fix my head)