The last time I nearly died

Anyone else with a chronic illness will know what it’s like to ride the merry-go-round of medical professionals; and this year I was referred to a new neurologist, who sent me for updated head MRI scans. It’s been four years since I was initially diagnosed with IIH, so an updated image would help her to understand the current situation.

Having had an MRI before, I knew the drill – super attractive smock, lie in a noisy machine. But this time, the specialists chose to use gadolinium dye to improve the images to be taken. I had signed consent for this, having no known reasons that it could be a problem.

Most of the images of my head were taken before the technician advised me that they were administering the dye (via an IV lure that had been placed before I was put in the MRI machine). Within two minutes of the dye being dispatched, I started to feel hot – I can still recall the prickling heat across my chest as I said to the technician “ah, I think something’s up”.

I had an allergic reaction to the contrast dye, which was such a strange experience to me as someone who experiences a lot of pain. I didn’t feel pain, but a rush of other symptoms that the clinical team recognised – I had a shot of adrenaline at the MRI facility and another before the paramedics shuttled me off to the Emergency Department at Auckland Hospital. I really didn’t think things were that bad – I was shaking violently from the adrenaline but not really in pain – so it was a shock to get to the ED and hear “straight to resus” as if I was on Shortland Street!

After the doctors had done their thing and I was in observation recovering, one of the radiologists brought me my belongings and told me that they had managed to get a good range of images of my head prior to my reaction, and it did look like there had been some improvement in the areas of pressure in my brain (which had led to my IIH diagnosis last time).

When I next met with my neurologist, she explained that after analysis of the images, she was lifting my diagnosis of IIH. So I don’t have IIH anymore, just like that. But because I do still have headache constantly and sometimes to a debilitating degree, I got a new label. Chronic Daily Headache with Migrainous Features. Well, that’s a mouthful to say, but most people at least understand what it means – as opposed to my previous label.

Since I don’t have IIH anymore, I also don’t have to take Acetozolamide anymore. Acetozolamide is a diuretic, used to prevent altitude sickness as well as some types of seizures and also a form of glaucoma. The theory in it’s use for IIH as I understand it, is to help prevent the buildup of spinal fluid which was putting pressure on my brain. I don’t know if it ever helped in that way for me, but it definitely caused a litany of side effects especially when I first started taking it four years ago. Pins and needles in my hands and feet, and an increase in the frequency of heart palpitations I get sometimes with anxiety. Since coming off Acetozolomide though, I have also come out of the fog of severe lethargy that was often keeping me from being able to do much more than shower in a single day.

So, while my pain is still present and sometimes ridiculously high, I have more energy and have been able to actually DO THINGS again. Well, not everything, but a lot more than I was accomplishing while on Acetozolamide. I went on holiday with my parents to Fiji and wasn’t the one to bail out part way through our little rainforest hike; I snorkelled and could dive deep and stay down, and I met a manta ray and decided I could probably SCUBA dive again – so I’m looking forward to that.

I’m still not great, though, with daily pain and some annoying triggers (some sound, light, smell can all make things worse) so I’m on a new course of trials. I’m trialling Botox, due for my second administration next week. 31 tiny injections of botox in my scalp and forehead, which helps some people with headaches like mine but not all people. Apparently patients notice improvement within the period of two treatments, which happen three months apart. I don’t know yet if it’s helping, but it’s certainly meant my killer eyebrow raising skills are compromised… I have to try really hard to frown too but apparently people still know when I’m mad!

At the moment, I’m doing more. And perhaps leaning on my painkillers a little too often in order to achieve that. There are a raft of other drugs I can still try, even after six years of trying to sort this all out, but they still know so little about headaches in general.

Doing more does mean doing work too, and a dear friend has brought me into a project which doesn’t require a huge workload from me. For me, it’s a bit of a trial on whether I can cope – physically as well as mentally and I’m hopeful it will go well. I’ll probably have to report back on that one as it happens.

For now, I’m really grateful I had an MRI that apparently nearly killed me, because since, it feels a lot lot more like I’m actually living again.

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

Relief

I hate answering “how are you?” because the answer is typically “crap”, but the bummer for the asker is a bigger bummer for me who lives it. 

Yes, others have it worse. Others share similar stories. This is just one small story of one small day.

No advice please. Do not make a single suggestion. Tweet me @antheaw or read more about my health starting here: The problem with my head, or just the #health tag.

I have used my most coveted pain relief concoction for four out of the last five days. That’s more than I usually resort to within an entire month.

Yesterday, I went without. “Without” does include the following medications which I take daily:

  • Acetazolamide
  • Citalopram Hydrobromide
  • Propanolol Hydrochloride
  • Paracetamol
  • Ibuprofen
  • Clonazepam
  • Pantoprezole

This list excludes vitamins, contraceptives, a digestive aid I sometimes need to prevent constipation, and additional occasional (i.e not everyday) medications.

Yesterday I woke around 6:30am, helped my partner in the kitchen to prepare for work before settling onto the couch. I have a a guest in the house but I didn’t dress yet. This couch session is for taking morning medication, hoping that being upright will help the fluid drain from my head and lessen the pain of the pressure built up there. #IIH

I played a little Minecraft on Xbox, got cold and too sore, returned to bed around 8:30am, and slept until midday when my guest also got up (they are on a different timezone, different body clock).

They made me poached eggs, I ate two and a slice of toast. My stomach could handle that, just, followed by some tea and a return to the couch. In the dark. It was a beautiful day outside but the glaring New Zealand sun sears my eyes and feels as though it fries my brain.

image

I researched online streaming, gaming, watched some streamers, played more Minecraft. At least within the game it feels as though I am making progress, and it takes my mind off of so many things until my pain becomes too much again.

Late afternoon, my guest went to walk in the lovely park across the road from my house. I was in too much main to go, and the idea of doing so was awful. It used to make me feel good to do that.

Alone I stretched, some yoga type moves, working with my body weight to trigger my weakened muscles. After more sleep, which is excellent pain avoidance, I showered in the hopes of feeling normal for my partner returning home from work and my friend from their walk.

This was quite an achievement, to shower and wash my hair, dress in clean clothes and get to the couch in one burst of energy and pain. Tolerable for long enough to complete that set of tasks. It’s impossible to overstate how hard a shower can be, not just for me.

By the time everyone returned to the house I was adamant I could do no more. No more. And yet.

From leftovers of two previous nights and various pantry staples I invented dinner, and made a disastrous mess of the kitchen. I didn’t need the food, and I’m finding it hard not to feel or to show resentment for having to provide a meal. My partner loves to cook and often will take over.

There was really no energy left for me to clean up. The only person I was letting down by allowing the kitchen to stay a mess overnight is me. My Mum always cleans her kitchen before bed, even after a party.

I watched TV with my guest and relaxed, I finally started to feel a bit better as often happens at night. My mind off the pain, I enjoyed her company and the show before everyone left for bed while I wanted to savour feeling ok.

If you are in pain and feel horrible 70% of the time, you want to enjoy the remaining 30% of your time as much as possible. I get too excited though, many of the things that I might like to do could set me back to feeling horrendous so, I can enjoy, but have to take it easy.

Bed again, my favourite place in the world but also the last place I would like to be sometimes. Three hours sleep until my partner wakes for work, my cat wedged against my other side, witness to my day.

Post-op

I’m writing a few posts about my health issues.

It’ll make the most sense if you read from part 1: The problem with my head. Each post has the next link below it, this is part 4.

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.


It’s my birthday! And I don’t feel nearly as awful as I’d suspected! I’m getting a tonne of messages asking how I am which is lovely, if a little hard to keep up with.

As Monday the 12th of January (operation day) was the first day operating this year for North Harbour Hospital where I had my surgery, they weren’t open when we arrived. There was one other patient waiting outside, it was very strange, and still dark at 5:45am.

When we were shown in, I was taken to my room first and given a gown to change into. I promptly put it on backwards. I had compression stockings put on (I have to keep them on for a week!) and some precursory medication given. Beta blockers, blood thinners, stuff to reduce stomach acid. People came and went and mum made herself comfortable in the recliner in the room, wrapped in a blanket.

I met the anaesthetist and while she was very nice and smiley, she was also very brisk. I’d been worried that paracetamol does nothing for me, and that I usually take tramadol and neurofen to help my migraines (though I have only had this once in about 4 months), but this was dismissed as “different pain responds to medication differently” and she was off.

Just after 8am it was time to go, and I was wheeled in my bed through the hospital to theatre. Mum’s tears as I was rolled away were probably the hardest part at this point so I had my brave face on.

The nurse and orderly handed me over, my identity and operation being performed were double checked and I was taken into the operating theatre. It wasn’t quite Shortland Street! Very bright and there was a large white board with “Whittle” on it had a long list of writing, labels for mysterious instruments.

I moved to the operating table and positioned myself in the middle. Monitor sensors were put all over me including my forehead, and the anaesthetist inserted the IV lure and injected me with something that started making me woozy. The gas came next and I was out.

As with the last time I woke from general anaesthetic I don’t remember much. I remember being wheeled back into my room and “them” saying to mum “here she is”, and then I drifted in and out of sleep. It was after midday so I’d been away for about 4 hours.

I was up out of the bed by about 2pm, sipping 30mL of water every hour. Pain was definitely present but the nurses had that under control pretty swiftly. I moved to the recliner chair and around 6pm my dad and sister came to visit. 

I have five “entry points”, about an inch long each tightly sutured, they should all heal well. One aches more than the others.

The night after the op was ok, every few hours I would wake up, page the nurse and have my wires unhooked so I could bathroom and do a few laps of the hallways. They get you “mobilising” early and often, as during surgery your body is inflated with gas and that gas needs to come out, so walking about helps get it moving. I had maybe 4-5 hours sleep and the hospital kicked back into day mode from about 6am. 

I started my 60mL of water per hour and had to down my regular medication crushed in water – it was like taking shots from a toilet bowl and I have to do that every day for the next month. Worst.

Mum arrived again around 11am hoping to take me home, I showered and had my wound dressings changed. We had to wait for a particular bodily function before I could progress, and I was pacing around my room like a pregnant woman willing the baby to move along. 

I was home by about 4pm the day after surgery, responsible for sticking to the fluids and monitoring the pain relief schedule.

The night was pretty bad, I got nauseous and diarrhoea had me up in the night, some dry retching. I phoned the nurse day 2 post op (yesterday) and she said it was all fine, all normal, just residual effects of the general anaesthetic.

During day 2 I managed to get all my fluid in, an optifast shake, some berrocca, water, and I had about a cupful of extra protein milk too and it all went well. I managed a small walk, a visit from a dear friend and to pat Local Cat. My insides seem to have stopped warring and making awful noises for now, and I almost managed to sleep the whole night last night!

I forgot what day it was when I woke this morning, but my phone was particularly busy with birthday messages so I was soon reminded. I’m up and about, feeling pretty good just not as nimble as usual.

I have a lot of fluids to drink! I’ll be on this liquid diet until two weeks post op, then puree and soft foods before slowly reintroducing (very well chewed) solid foods. I haven’t had any discomfort from taking in liquid to my new tummy yet so let’s hope the good-ness continues to last!

Yes, my head has been a bit sore too – the past two days but nothing really beyond the usual.

Will I do anything special for my birthday? Nope, but I plan to celebrate in 6 months time when I’ll be healed and hopefully doing much better!

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.