Health Update

This year hasn’t been great for me so far. I’ve had near-daily headaches that I assumed were due to a flare up of my Idiopathic Intracranial Hyptertension, but a recent Lumbar Puncture showed that my pressure was normal. So, possibly these are yet another stress-induced issue: migraines. I’ve been “treating” the headaches with paracetamol & ibuprofen – which brings them from an 8/10 on the pain scale to a 5/10 – because opioids can increase intracranial pressure. However, I’m only allowed to medicate for 3 days a week, so that’s been fun!

In November, I had an allergic reaction to an unknown trigger, and in addition to facial swelling, a bright red itchy rash covered my face, neck, chest, belly and legs. I’d had a similar reaction in the year previous, so assumed it was some seasonal allergen. Ended up taking a couple of weeks worth of Prednisone, which cleared the rash but left me with a nasty case of folliculitis (aka random spots of acne in odd places all over my body) that I then had to take antibiotics to treat. Because my body doesn’t like to do anything right, I then had recurrences of the hives & itching!

My GP has diagnosed stress induced urticaria (and to be fair, being a chronically ill person in the middle of a pandemic is fairly stress-inducing), and her dermatology referral was declined because apparently they’re not taking appointments due to Covid. Nice. So I am still insanely itchy and covered in rashes. It’s not helping my mood, as you can imagine.

The pandemic has set my anxiety & agoraphobia back to “shitty”, after I’d made quite a lot of progress in 2018 & ’19. I don’t want to catch Covid – I’m triple vaxxed & wear double masks when out (which is only when absolutely necessary). I don’t know how my body will handle it, as I have many co-morbidities that would complicate a recovery. Last time I got the ‘flu, even though I was vaccinated, I also developed pneumonia. It sucked, and so I’m not taking Covid lightly.

Anyway, I’m ready to trade in my body and upload my consciousness to the internet whenever Big Tech is ready!

Journalling for Mental Wellbeing

Originally posted at The Catastrophe Club.

If you’ve ever talked to a health professional about your anxiety, they probably mentioned journalling. That’s because there have been a number of studies that demonstrate how useful regular journalling is for managing stress, anxiety, and depression – and it’s something that anyone can do, which doesn’t cost a lot of money or take up a lot of time.

How you journal depends entirely on your needs and preferences!

Want to focus on the positive? Try gratitude journalling – every day before you go to bed, write down three things that have happened that day for which you are thankful. Sometimes, this can be the big stuff (the war is over! I got married! Brooklyn Nine-Nine was renewed!) and sometimes it’s the little things (I woke up feeling peaceful, I found my lucky pencil, the way my cat stretches and yawns is cute). The idea is that we spend enough time and energy worrying about all the bad stuff (apparently something like 80% of automatic thoughts are negative!) so by investing time in noticing and being thankful for the good stuff, we build up our resilience and regain some control over our reactions.

Not a words person? Try colouring! You can buy colouring-in books and journals, simply print pages off the internet, or create your own drawings – then sit down and focus all your attention on the act of creating art. This is mindfulness in practice: engaging the senses of your body, focusing on the moment, making time. If anxiety is worry about the future or past events, then mindfulness is a solution that brings you to the present, meaning your brain has less ability to give anxiety space.

Can’t stop worrying about a particular incident? Try a Cognitive Behavioural Therapy trick – the thought record. Write down the context of the worry: what happened, where, when, with whom? Describe how you felt, and on a scale of 1-100%, how strong those feelings were. Think about facts that support how you’re thinking about that incident – remember, facts are externally verifiable evidence, NOT judgements or personal interpretations. What things might contradict the thoughts you’re having? How could you think about this incident in a different, more balanced way? Finally, rate your mood again to see whether this exercise helped. You can find a basic Thought Record Template here (PDF).

Do you lie awake at night, thinking about all the things you have to do? That sort of rumination builds anxiety up, making it more and more difficult to get to sleep! One of the best tips for dealing with it is to keep a notebook by your bed, and make lists of the things you’re worrying about. Tell yourself that once it’s written down, it’s dealt with for now. The next day, you can work through the list at your leisure. If you’re a stationery addict, there’s a huge range of day planners available to make this easy and enjoyable.

One new type of planner is the bullet journal. These have been around for several years now, and are terrific for people who are prone to writing to-do lists on every scrap of paper they have, as well as people who like beautiful stationery, arts & crafts. Bullet journalling is exactly what it sounds like – instead of writing diary-style entries, you make bullet point lists and can use symbols, grids, diagrams and all sorts of creative ways to track items. There’s a huge fanbase around bullet journalling, so if you become obsessed, there are plenty of like-minded people to share and create with. Try searching #bulletjournal on Instagram!

Okay, I hear you say, it’s 2018! Who still uses pens and paper?? Well, I have good news – there are more journalling apps for your devices than you could ever imagine. A really simple, mental health focused one is “What’s Up?” – available on both Android and iOS. Along with tools for managing your calm, coping strategies for managing your thoughts, and information on a range of mental health issues, What’s Up also has a diary section to help you log your day, habits, and more. If you’d like to try digital colouring-in, take a look at Colorfy for Android and iPhone. Both of these apps are free, but there are also paid apps with more in-depth options, if you decide that the digital life is for you!

If you’re keen to give journalling a try but don’t know where to begin, try these writing prompts:

  • What made you feel joy today? What made you feel sad? What made you angry? What other emotions did you notice?
  • If you had to write a letter to someone in particular, what would you say to that person?
  • Describe what your anxiety would look like if it was an external object. What does it sound like? Smell like? Taste like? If you touched it, what would it feel like?
  • What advice would you give your past self?
  • What is your favourite memory? How does it make you feel?
  • If you could paint a picture of your dream life, what would that picture look like?
  • Do you have a hero? How would they deal with the life problems that you’re experiencing?
  • If something bad happened today, write about how you’d encourage a friend if they had gone through it instead of you. What would you tell them about themselves? How would you build them up?
  • Make a list of the people you can contact when you’re feeling down.
  • Make a list of things you can do to distract yourself when you’re feeling overwhelmed.
  • What inspired you today? Write down a quote or a story that gives you hope.

Final thought – don’t censor yourself. This is your personal journal – spelling and grammar are not important. How other people will perceive you is not important. Let your emotion flow out onto the page. Promise yourself that for at least this journalling time, you will practice self-compassion and self-kindness. Remember: you are stronger and more capable than you realise.

Recommended Products

Tiny Buddha’s Gratitude Journal by Lori Deschene

Tiny Buddha’s Worry Journal by Lori Deschene

Self Care Journal by Rachelle Abrellar

Me, Myself and I: A Bullet Journal Notebook with Dot Grid Pages – Perfect for To-Do Lists, Dotted Journaling, Diary, and More

Knock Knock’s I’m So Freaking Freaked Out Journal

How to Be Happy (Or at Least Less Sad): A Creative Workbook by Lee Crutchley

Transactional analysis, the P-A-C model, and my Self

Innocence. Vulnerability. Freedom. Curiosity. Fun.

These are the childlike qualities that I want to revive in my life. My inner child wants to be seen, heard, cherished. My inner child needs support, acceptance, love. My inner child needs my inner parent, and my adult self hasn’t been valuing either of those parts enough.

So here is what I’m going to do to cherish my child-self:

  • Be open and honest, and share from my core
  • Embrace my need for beauty in my surroundings, and indulge that need
  • Try new things, take risks, look for adventure
  • Find things that make me laugh
  • Create things that make others laugh
  • Listen to and encourage my intuition
  • Live in the moment, and give myself time to really feel joy
  • Be physically and socially active every day

And here is what I’m going to do to encourage my parent-self:

  • Practice self-compassion
  • Nurture others
  • Set healthy boundaries
  • Make plans for future happiness
  • Be of service to my community

The Parent-Adult-Child model: the basics

Treating IIH

Okay, so I have previously complained about my IIH headaches and the fact that they can’t really be treated with most forms of pain relief medication, but I didn’t really explain that in any depth.

There’s some evidence that opioids like codeine can raise intracranial pressure, and I can testify to that. I’ve tried both immediate release and prolonged release versions, and neither were helpful. Last time my headache reached 7/10 level pain, I went to the emergency department at the hospital, and they tried me on codeine… an hour later, my headache was worse, more like 8 or 9 outta 10! So yeah, flag that.

Paracetamol and ibuprofen, when layered correctly, can take the edge off, but as you’re not supposed to take them continuously, having non-stop headaches for over a month has these less efficient.

So here’s my methods of coping:

  • I take 25mg of Topamax three times daily. It makes me sleepy, which is fine because when I’m unconscious, there’s no pain. 😉
  • I sleep on a ramp of pillows, so that my head is elevated. This helps prevent my ICP from rising and making the headache worse.
  • I use ice packs, including a gel eye mask that hubby searched multiple pharmacies for, to cool everything down whenever I have a chance to sit.
  • Every 3 days, I take a pain break and use Panadol & Nurofen to get some relief. I also have some harder stuff for when the pain is 8/10 but I’m very wary of opioid addiction, so I avoid it if at all possible.
  • I practice breath-focused meditation, which is fantastic for surviving chronic pain.
  • I’ve made a herbal-infused massage oil that either I or hubby can massage into my temples, forehead or neck & shoulders to ease tension and some pain.
  • Kitty snuggles. It’s amazing how much better you feel with a purring kitty cat on your lap.

IIH – Irritatingly Impairing Headaches

Okay, I admit, that’s not really what IIH stands for. In actual fact, it’s Idiopathic Intracranial Hypertension, a.k.a. Pseudotumor Cerebri and it means that there’s too much cerebral spinal fluid in the subarachnoid space in the brain, causing high pressure that results in all sorts of fun symptoms.

For me, it’s currently showing itself as non-stop headaches that rate on a pain scale from 4/10 all the way up to 8.5/10, and are immune to or made worse by most forms of pain relief medication.

0-10 scale of pain severity

With the head pain comes nausea, pulsatile tinnitus, and increasing difficulty with vision as the pressure gets more intense. It’s… less than ideal.

I was initially diagnosed in 2013, after a visit to the optometrist ended with a referral to the ophthalmology clinic. I’d been having headaches for a while, but put it down to needing a new glasses prescription. Turns out my optic nerve was swollen, which is one of the symptoms of IIH (as well as a bunch of other stuff which had to be ruled out, yay). After spending an entire day at the eye clinic, I was referred to the neurologist, who prescribed me a medication called Diamox while he put me on the wait list for a lumbar puncture. I was also recommended to lose weight, as one of the suspected triggers for IIH is sudden weight increase and/or obesity. The Diamox, otherwise known as acetazolamide, gave me an incredible pins & needles sensation in my hands, but didn’t do much else. I lost more than the recommended weight, but with no relief. And then came the LP.

I was lucky enough (she says, tongue firmly in cheek) to have a medical student there for my LP, so he gave it several tries – to the point that a 10 minute procedure became a 90 minute one, still unsuccessful. My poor hubby, never great around needles, was waiting down the hall, freaking out as the longest 10 minutes ever stretched on and on. When I finally gave up and asked them to stop, he came in to find me curled, crying, on the bed, covered in marks and iodine. It was not a great day.

So, back on the waiting list I went, until April 2014 when a slot opened and I was able to have a fluoroscope-guided LP. It still wasn’t easy – even getting a line into a vein required the doc to use an ultrasound machine and the procedure itself took 90 minutes – but I was zoned out on pain relief for most of it. I say most, because the worst part for me was the 2 hours I spent post-LP, having to lie flat so as to avoid a low-pressure headache. I’d forgotten to use the toilet beforehand, and by now my bladder was close to bursting, but I was damned if I was gonna use a bedpan or have a catheter inserted!

With IIH, a lumbar puncture is both a way to diagnose and relieve the symptoms. My pressure was definitely high, and they removed 30ml of fluid. The next day, no more headaches. Like magic, only science. And maybe a big dose of luck, because it doesn’t work for everyone.

So now I’m waiting again, this time on a different medication called Topamax, for my neuro & LP referral to come through. Tonight is a good night; I’ve only had 2 paracetamol, and my head pain is down to 4/10 so I can actually think.