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.

Moving to WordPress

WordPress was a thing, ten years ago when I started my blog. But I chose Tumblr because it was easy and I liked the built-in community that came with it, a context for my content as I posted it.

I also was more prone to post just a photo, or to share some content I liked – song, video, site or someone else’s media. In more recent times though, I’ve preferred to post my own content and most of it written. I’ve disengaged with the community there as my dashboard became too busy to keep up with – in a very Twitter-like fashion.

Since the change in my content posting habits, WordPress became the more obvious platform for my blog, but I just didn’t want to go through the motions of moving. I also felt quite loyal to Tumblr through “thick and thin” shall we say, as it’s been a tumultuous time for the site since their acquisition.

I made friends through Tumblr, we had an Auckland meet-up (which arguably was just a bunch of us web-industry folk plus a few), I discovered some really great creators and bought their stuff. People even read my stuff, and talked to me about it!

Clearly, my content isn’t porn. But Tumblr’s announcement yesterday that they plan to become a “better, more positive Tumblr” basically through censorship just doesn’t ring true for me. This article from EFF, “Dear Tumblr: Banning “Adult Content” Won’t Make Your Site Better But It Will Harm Sex-Positive Communities” does an excellent job of explaining why.

Even though I no longer engage with the community on Tumblr anyway, and my own content won’t be affected, I’m particularly concerned by the erasure of positive content and particularly of Queer content. It’s early days for the policy and it’s algorithm, but the fact that rainbow content is flagged at all is sufficient to have made me uncomfortable enough to want to stand by my values and move house.

So things in my new home are ugly.

I’ve gone with hosted WordPress, torn some hair out over DNS reconfiguration, and my content import is inelegant AF (photos are within body content as opposed to “main image” content, so previews look pants, and many posts don’t have titles).

But I believe in a free, open, representative internet and a few hours of work to migrate away from a platform that doesn’t share these values is worth it.

So my domain is the same, and I’ll be posting henceforth into the void at antheawhittle.com. RIP Tumblr.

Image of this blog's homepage while it lived on the tumblr platform.
Screenshot before the move.

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

Pt 2: An open letter to Countdown Greenlane

Last week, I wrote about an incident in a supermarket, and the letter I sent management about it.

I received a response, and responded with more questions. Read on for these.

Perhaps holding businesses to account for safety, or even just encouraging them, can happen from the outside into the business too?

I suppose my point is, speak up. Follow up. Speak up some more. Especially on behalf of those who can’t do so.

Hi Anthea, 

Thank you for your feedback about the incident in store recently, yes I was made of this by my Duty Manager and have coached him on how we could handle this better in future.    We provide team with Conflict training during induction and we do refreshers at various points. Unfortunately it doesnt look like the team have used this training which is disappointing. Our duty managers should lead this during any event so I have added this to our catch up last week.

I do apologise for any inconveinence caused and if I can be of any further assistance please let me know

Regards

Paul Maxwell

Store Manager

Countdown Greenlane 9128

I’m publishing this email without express permission, though as I’m doing it in good spirit, I hope if I need to disclose publication or am “found out” it won’t be a big deal.

So, great, the incident was reported, some stuff was done about it. Some people talked a bit. I still have questions, so sent a follow up, I hope it inspires some more action but judging by the hasty email above… Perhaps not.

Hi Paul,

I’m pleased to hear from you. I’d just like to know what procedure should be for your team in this kind of situation? What should they have done?

I have friends who are victims of abuse and/or who are ill, vulnerable and fragile and I want to know how they would be looked after in this kind of situation.

I don’t “blame” anyone for this incident but it’s a really good opportunity to look at a real scenario and take notes to do better for customers and for your staff too.

Thanks for listening,
Anthea Whittle

I’m still rolling this topic around in mind, how can we make public or semi public places safer? And again, talk to me if you like. Here, on Facebook if we are friends there, or on Twitter: @antheaw 

An open letter to Countdown Greenlane

I sent this to Countdown/Progressive Enterprises via their customer support page tonight, 18th of November. I will also publish the response I receive, apparently I can expect it in three working days. I’m interested to hear from other women and customer service staff their thoughts on this incident, feel free to tweet me: @antheaw

Tēna koe,

I want to report on an incident in your Greenlane store this evening at 7pm from a customer perspective. I hope it has already been reported by staff and I would like to know follow up actions, as well as provide my own suggestions.

From the pet care aisle of the store I heard shouting coming from the checkout area at about 6:50pm, a woman screaming and shouting at a man. I assumed it was a domestic issue, and I had seen a security person at the store entrance when I arrived. I felt sure the matter would be resolved quickly.

It continued however, and was still in full swing when I arrived at the checkout area, busy with social purchases at this time on a Saturday night. A woman in her late twenties was shouting at a man of a similar age to get away from her and that he reminded her of someone who had hurt her.

I witnessed other customers standing around staring, and staff doing the same. The checkout operator was fulfilling their tasks of sales and taking payment from these two separate customers.

I garnered further details but hope to convey the most useful information to Countdown for handling such matters.

It would have been appropriate for one of the customers to have been escorted to complete their purchase at another checkout. Either of them.

In this scenario, the woman was very distressed. I approached her gently and I tried to gather if she was going to be driving (she shouldn’t have in her state) and if there was someone who I could call for her. She just wanted to get out of there and repeated that.

I had items to pay for and a personal obligation to meet immediately, otherwise I would have left my items and stayed to support her. She paid and left.

I paid for my items (receipt marked 7:02pm) and looked for the woman in the car park. I am still concerned for her wellbeing and wasn’t able to locate her. I did see a staff member from Countdown standing outside.

In this incident, I would have liked to have seen a supervisor approach her to ask if she was safe, if she could be helped.

The customers concerned did not actually know each other but the woman thought the man looked like someone who had abused her and so was triggered into this episode.

Someone should have stood between her and this person, and supported her. She should have been taken to a private space and offered support and a phone, her wellbeing needed care.

I would like to know whether there are any procedures in place for handling instances like this in your stores, what they are, and whether there is any training given to your staff to handle these situations.

The event could have been upsetting to staff on duty, and I hope they are well supported too.

Could you please advise what your policies on this are, how they are upheld, and what else has been reported on this incident please.

I do expect a personal response please.

Thank you,
Anthea Whittle