Tag: illness

How Colour Therapy gave me M.E

It’s been five years since I was so sick physically and mentally that I resigned my full time job. I have a neurologist’s diagnosis of Idiopathic Intracranial Hypertension; but if anything, despite all the best efforts that my support network and I have put into getting “better” I keep having setbacks and overall decline.

Medical intervention surgically, with medications plus heeding the diet and lifestyle recommendations seem to help, some seem to hinder. There comes a point where you wonder if an experience is a symptom or a side effect.

Without dwelling on my symptoms, I am best frenemies with my bed. 

I spend most of my time here, and when I have a low enough pain score I spend the energy I have tending to life – housework, errands for medication and groceries and such. I’m really damn thrilled when I can manage to go out and do things – like go overseas for a family member’s wedding or over a few suburbs for a Christmas party.

I’m on the “Jobseekers” benefit with a sickness deferral, and have been since the first quarter of this year. I have screeds of medication, doctors, tests, results and information to keep track of, and I’m losing my mind.

I’ve talked about Brain Fog before, but now daily I forget so many things – what’s on the shopping list, when (or if) I took my medication, what words I want to speak when forming a sentence. I end up stumbling and mumbling over words to strangers and embarrassing myself.

My sister needed me to collect her from work yesterday, immediately as she works with kids and wasn’t well. While I was capable of doing that, I had forgotten where her work was – again. She reminded me. I forgot while getting ready to leave the house what I was leaving the house for. She is lucky that I made it there (after another reminder of the address) at all!

There are strategies I use that all forgetful people would use, write everything down (on my phone, lest I forget the paper), tell someone else, make an association. I get my medication measured for me in a dispensary pack where I take a little sachet of pills morning and night, they have dates on them.

I’m really sad about memories, like memories of experiences with my partner, who I’ve been with not yet a year.  He recounts memories to me and sometimes all I can manage is “that sounds like something I’d do”, while casting about in the fog for any scrap of a trace of the actual experience. I’m sad I don’t have those things to revisit when I am not well, but also that I can’t share in reminiscing with him, but who else too? My other family and friends? I desperately don’t want to forget them, you.

When your mind blanks repeatedly throughout your day, it gets frightening.

Will this get worse? It is getting worse. If I can’t remember how I manage my appointments and my medication and my tests and things, who would be able to do so? I can still drive, go to appointments and things alone. But what if my ability lessens further? It’s hard to think about.

Medical treatment is slow. Not just because of “The System”, but because I can’t follow up and make appointments for myself sometimes for weeks – I’m too sick, too tired, trying to take part in the business of living. I might feel good at 3am and ready to follow everything up, but that’s not when medical establishments want to know me. I slow it down, as everything is slowed down for me now.

Alongside the medical approach, is the alternative approach. Those dreaded “have you tried…” pieces of advice, meant with the greatest love but often received with the meekest resigned sadness.

Colour Therapy involves being “dowsed” by a practitioner who runs through a catalogue of colours associated with malaise – illness, infection but not injury. They pick out the colours associated with what they feel affects you, and you are then exposed to the light frequency emitted by those colours as therapy. I’m not here to explain colour therapy though, just it’s impact on me.

With no more information than the sight of me on an early summer day, when my pain was low and my energy and mood high, and that I have “headaches”, the practitioner pulled out 19 major initial areas I needed treatment.

With each colour she pulled came a label and the areas affected in the body or the symptoms I experienced. I don’t have the laundry list and I don’t want to focus on my symptoms but the dowsing was Spot. On. I have no idea how, based on the little information she had, she was able to pinpoint the specific things that are issues for me.

After three days, including two nights, the more senior practitioner checked my progress, and delivered their diagnosis. Myalgic Encephalomyelitis (ME).

The fact sheet was handed over with sympathy and care, but I know ME. In fact, my medical doctors have vaguely started down the path of ME/CFS (Chronic Fatigue Syndrome) as a possible diagnosis for me.

I am a scientific believer but value care of the spirit too; I typically would stick to traditional medical practice, particularly for a diagnosis. But after much thought I’ve decided to accept the diagnosis of ME/CFS, and pursue a medical diagnosis too.

In deciding to accept this label, I particularly acknowledge how this particular condition is very very hard to diagnose. However, the symptoms I live with everyday are described in almost comforting familiarity by ME. More so than even my medical diagnosis of IIH – where I don’t actually experience some of the symptoms, and I definitely don’t respond to treatments like lumbar puncture to reduce CSF pressure on my brain.

So now, I have a new path on the same journey and for me it feels like a positive one though it’s scary. Pursuing a medical diagnosis of ME/CFS will probably include a loooooot of tests.

It also means sharing with those around me my experience and my needs for support or just needs in accommodation as an ill person, which I already have been doing for some time. The biggest change is really an internal one, but with the effects on my brain – including cognitive impairment, I’m really scared about what is to come for me.

If you noticed I put “better” in quotation marks earlier, it’s because I’ve also accepted that there is no such thing as a full recovery from this, I won’t get “better” like you would from a common cold or a scratch.

I will get better in that I’ll be better understood, better equipped, and hopefully better able to continue living a fulfilling life and contributing to the world with my existence. There is hope, even while I watch my peers achieve goals I previously had for myself, I can look forward to new ones that suit me and my abilities better.

How you can help me

I’ve been asked “how can I help?” and honestly, if you’re not already someone I call on then the best way to help if you can, is with money.

I hate to say it. We don’t say it. I don’t want to say it, but I say it as much for me as for any other person limited in their earning capacity.

I don’t expect people to give me money, I have financial support through WINZ that goes to some extent and the privilege of supportive family and friends. I hate to be at this point because I can’t express my thanks, appreciation and generosity as I used to, with gifts of food or other thoughtful tokens. I could go on.

You can commission me to write – even tell me you’ll pay me to write another blog post right here, about anything you like; or for anywhere that fits within my ethics and kaupapa. I am hoping to get more paid writing opportunities like my recent piece for Radio New Zealand, so sharing my writing also helps!

Please contact me if you want to commission me, I want to earn some money.

Thanks so much for reading and your support!

Links:

Find out more about Myalgic Encephalomyelitis: https://rarediseases.org/rare-diseases/myalgic-encephalomyelitis/

About my diagnosis for IIH, “The Problem With My Head” http://antheawhittle.com/post/104958680107/the-problem-with-my-head

Let’s do this thing.

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 start with part 1: The problem with my head. There’s also a second piece: Fix my tummy, fix 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.

On the 5th of November my mother drove to Auckland to come along to a seminar with me about “weight loss surgery”.

I use the quote marks as I find the term somewhat misleading, the surgery doesn’t guarantee weight loss, and it’s not like other surgeries where you have an operation, recover and are largely done, fixed.

Nope, it’s part of a whole big life-changing piece of work. That work includes the inescapable focus on diet and exercise that go hand in hand toward healthy weight loss.

So why have the surgery if it’s not a fix? Because it helps. It helps by restricting the capacity of the stomach to tolerate food, and the particular surgery I am having for some people seems to “switch off” their hunger and desire for food, making it easier to make healthier choices in nourishing themselves. I’m not a doctor, I’m not going to explain it, that part has been done before. I just want it to be clear that:

This operation will not make me thin.

Changing my life around diet and exercise will. Dealing with some (still very scary) issues I have mentally, will.

I know, right? Raw deal. I really wished it was so simple as having an operation and having the issue magically solved, and being fine and well and brilliant and being able to fit into “normal” sized clothes. 

I knew all this before going along to a stuffy clinic on a Wednesday evening, for that first face to face experience of the clinic after basically memorising (and professionally criticising!) the practice’s website.

What was probably supposed to be a somewhat welcoming and encouraging presentation made my eyes roll at cliché “tips” about incidental exercise and how many calories lurk in the humble gingernut.

Fortunately, two things were fact: I’d already talked myself into the idea. And secondly, the presentation ended with a short talk from a post-op patient who shared some of his experiences and the reality of the process, and how quickly through hard work his life had completely changed.

Thank the stars for some reality, honesty and genuine passion.

Further honesty was found in the handout book we received, the price. For the roux en y gastric bypass with silastic ring as performed by this practice, we were looking at $20,300 plus pre-op consultations. It’s a big number but if there’s anything you spend a big number on it’s your health, I just choose to write it here as I get asked often “how much”.

Three weeks later, on the 26th of November I had my first consultation with the surgeon, the key outtake of which was “how’s January 12th?”. I think I managed to blink in response.

This was my first appointment, and surely there were more hoops to leap through than this? “I see no reason to wait” said the qualified professional in the room. “Well I guess you’re giving me a new tummy for my birthday then” I said (my birthday is on the 15th, it’s going to be awful).

Suddenly this idea was a real thing that was happening to me, in six weeks. Six WEEKS! The YouTube Americans had all gone on about months of preamble, and here I had six weeks.

In terms of other pre-op preparation, I met with the practice nutritionist, who was lovely and personable and understood my head pain and that it’s not so easy to exercise when doing so feels like suicide. She also shared that they have had other patients with Idiopathic Intracranial Hypertension who have improved after surgery (yay!!!).

I was put on a strict diet right away, based on the Optifast very low calorie diet – meal replacement shakes, soups or bars and two serves of certain veges per day. Basically nothing else, no fruit, no carbs, no additional protein. I started on the 12th of December (one month before surgery), and I lost 4kg (8.82lbs) in the first week. The first days were hell.

I also met with the psychologist who was basically checking I was sound of mind to proceed, and watching for how the process might affect me mentally. I think she did really well and on reflection, I think I’ll book in to see her again and start digging at some mental Stuff.

Lastly, I returned to the practice before Christmas to read and sign the consent form. That was a rather expensive ten minutes.

After tying up a little work stuff in Auckland, I scurried off home to Coromandel for my Christmas “break”. I had Optifast shakes for breakfast, lunch and dinner. I ate some normal food but wasn’t ridiculous about it. Not as ridiculous as usual. I ate hāngi on Christmas day and had dessert and enjoyed it. My sister’s visiting Irish friend ate my share of the potatoes (and then some).

Some days I had a small meal like what everyone else was having instead of my shakes. I’ve definitely not been strict on the diet but I’m down over 8kg (17.6lbs) pre surgery which for Christmas time feels reasonable.

I didn’t do very much during my time at home in Papa Aroha, I listened to a lot of podcast episodes about bariatric surgery, interviews with patients and the like. It has really helped me to prepare, the whole idea is much more normalised to me now and some of the stories are really thought provoking.

It’s quite scary to see how much I relate to many stories too, where people are behaving ridiculously and treating themselves terribly and I have a bell of familiarity ringing in my mind.

I’m back in Auckland now, and I know that I will be the first patient for my surgeon this year. I must be admitted to hospital on Monday morning at 5:30am. The surgery is currently scheduled for 8:30am and should take a few hours.

What I really wanted to say in this post is thank you! If you’ve bothered to read this much you really deserve my thanks for a start, you cared enough to keep reading or you’re watching with a horrified fascination – but no doubt you learned something.

Thank you to the friends and family who comment when I post these “little” pieces of writing to Facebook or Twitter. Thank you for sending me “I’ve been thinking of you, how are you going?” text messages. Thank you for telling me you like my writing! For messaging me telling me you think I am positive or strong or beautiful or confident or any of the other lovely things you’ve said.

Thank you for telling me you know someone who did really well after similar surgery. Thank you for offering to help or to listen because you’ve been through it yourself. Thank you for offering to fetch me stuff! Thanks for messaging from the other side of the world letting me know you’re pleased to have caught up with what’s going on. For sending me cards and best wishes and being there to respond when I have things to Say.

Please don’t stop!

See you on the other side x

Part four: Post op.

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)