Tag: living with trigeminal neuralgia

Chronic Illness and the Reward of Achievement

Bones

While at an appointment for pain management, the physiotherapist told me something so utterly profound, it has changed the way I manage my life.

When you are chronically ill, you do not feel a reward for doing stuff, achieving stuff. You only feel punishment from your body for doing / achieving the thing, whether that’s by increased fatigue or increased pain. So we don’t actually want to do anything because we are punished for it.

And suddenly so much of my life makes sense. I don’t want to do little tasks, like hanging up washing, because it will exacerbate my fatigue and pain considerably. I don’t even want to un-pack the dishwasher for the same reason. Some days I don’t want to get off the couch, because walking is going to cause pain and fatigue.

Over the last couple of days I have trialled a new thing. It’s a bit of a triple whammy. Instead of trying to remember to do things, and when they need to be done by, I have downloaded a task management app on my phone (and chromebook) and begun adding things to it. Right now I’m trying to de-clutter my lounge, so I’ve scheduled myself a small task to do each day, something bite-sized that I can actually achieve – today was ‘clear the top of the desk’. Yesterday was ‘clear the floor around the desk. Tomorrow I have ‘organise the top shelf behind the desk’ and the day after I have ‘organise the bottom shelf behind the desk’. Now, admittedly, some of this organising and clearing is ‘I don’t know where to put this thing and I don’t really have anywhere to put it right now so I’m going to move it further into the de-cluttering area’, but the majority of it is actually organising things and putting them in their proper place. Once I have completed my task, I get to ‘tick’ it off on my app, and then administer the reward!

This is where it got a bit tricky. What should I reward myself with? Should I have a scaled reward system, so the bigger the task, the greater the reward? What can I give myself that won’t be so expensive so as to be unsustainable?

I asked a good friend of mine who suggested I look into love languages to figure out what will work best for me. So off I went to research love languages, and then self-love languages (which apparently can be different), to discover that I am a physical contact and quality time kind of gal. No real surprises there. But even with that information I was still stumped. I don’t exactly feel comfortable giving myself a hug, self-massages are out because they’re painful rather than relaxing, and I already have excessive amounts of down time.

But I did realise that I could give myself small amounts of very high quality relaxation time by listening to meditation music (courtesy of some random list on Spotify, bless other people doing the work for you!) and lighting a scented candle and just staring at it. It’s a small circle of calm in my otherwise hectic life, and provides my body with powerful relaxation, which reduces the pain and fatigue. It’s also my favourite scented candle.

For other, bigger tasks, I’m thinking about things like a hot shower with music and scented candles, and then massaging my favourite skincare products in. I have a delicious foot moisturiser that relieves tension and pain, and a face cream that helps to soothe my trigeminal neuralgia. For really big tasks, maybe a massage, or maybe I rope my amazing human into giving me a head rub or extra cuddles.

It took hours to work through this, but it is well worth having a think about. I’m hoping that if I can provide enough positive reinforcement for completed tasks, then getting the motivation to complete tasks will be easier. Because I’m tired of being punished. It’s time to turn the tables.

Noise Cancelling Earbuds

Bones
Photo by Icons8 Team on Unsplash

A good few years ago I went ahead and got myself a pair of Bose Quiet Comfort II headphones. These were the top active noise cancelling headphones available (within my price range). I got these right as exam period started up, and I lived in them.

I have aspergers, or autism as they’re now calling it. I come from a long family line of aspies, and we all have our own quirks. For me, noise is hard. When I’m stressed, like during exam time, I can’t filter out noise and I can’t concentrate around that noise. The noise cancelling headphones were an absolute game changer – all of a sudden I could isolate myself from the outside world and hyperfocus on my uni work. It was amazing!

Well then trigeminal neuralgia happened. All of a sudden my one escape from the world was no longer there, and I had to deal with extra pain, extra stress, and noisy life. I haven’t been able to wear anything over my face since. I made do with noise isolating earbuds and bemoaned the loss of my peace and quiet.

Until now. I just splashed out and got myself a pair of Sennheiser’s new Momentum True Wireless 2 earbuds. I quite honestly cried when I put them in and turned on their active noise cancelling function – all of a sudden the world around me just dropped away, and I heard nothing for the first time in over a year.

This is bliss. I’m going to live in these for a while now!

Chronic Illness and Cleaning

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Photo by JESHOOTS.COM on Unsplash

I hate cleaning. I hate it with a burning passion, because it takes time and energy and effort and then you have to do it all over again next week. I like things to be done once and then stay done. Which, sadly, isn’t the case for the dishes, or the dust, or the cat litter trays, or the bathroom, or the toilet, or the carpet, or the cat hair …

I live with two lads who firmly believe that cleaning is a thing you do once every six months when it’s a flat inspection and that’s about it. If anything was cleaned, it was me who did it. Including most of the dishes. A few years ago we decided on a compromise: we’d all pay a bit extra, and each week we would have someone come over and clean the communal areas for an hour, these being the floors of every door that’s open (so my flatmate can leave his office door open if he wants and it’ll get vacuumed), the bathroom, and the toilet. It worked out fantastically for everyone involved – I suddenly had more spoons to spend elsewhere, and we all got a nice clean house.

Unfortunately COVID is a thing and my amazing cleaner is half way up the country at home. I’ve been managing to vaguely keep on top of at least the cat and dog hair, and the bathroom, but the toilet’s gone to the lads. Even more unfortunately we have a flat inspection in three days.

So I get to do all the cleaning.

Now I’m the kind of person who likes to get up, do everything in one hit, and then sit back down again. This sometimes works, and sometimes doesn’t. I’d read somewhere about doing things in bits, and taking rests in between – a concept that fills me with deep unease and no small amount of misdirected anger. Since I have only a few days to get the house to rights, and then a full week ahead of me (with a full day of driving immediately after that), I figured I should probably do the sensible thing and pace myself.

I got up, I cleaned a few more spots of cat puke off the carpet, liberally applied toilet duck (although at this point I’m convinced the toilet requires an exorcism), and sprayed the cleaning product all over the shower stall. Then I lay down for 40 minutes.

It was a bloody challenge to haul myself off the couch again and continue cleaning, but get up I did, and thus I cleaned. I did the shower stall and the sink, and lay back down. Then I got up and went out to the paddock for the first time in days.

And you know what? I think this whole ‘doing a bit at a time and then resting’ has a lot more going for it than my usual ‘DO ALL THE THINGS AT ONE TIME’. And I didn’t combust with misplaced rage while doing it, either. I’ll have to experiment with it more!

Life In Lockdown

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Photo by Bruce Tang on Unsplash

Life has changed dramatically. We have been on lockdown for months. It’s affected every area of our lives and things will never quite be the same again.

The added stress of lockdown, a pandemic (a freaking pandemic, how is this reality??), and the second economic crisis I’ve lived through (so far) really knocked me for a number for the first couple of weeks. Well, that and being on my feet for a week solid beforehand. Regardless, I slept for two weeks pretty much solid, and it wasn’t until the fourth week of lockdown that I became a semi responsive human being again.

I haven’t been able to go to for acupuncture for my trigeminal neuralgia, so that’s flaring up a wee bit more than usual, but otherwise this is the healthiest I’ve been in donkeys years, because I’m not surrounded by people. I haven’t had a cold, or the flu, or the snuffles, since lockdown began.

And I’m loving it. I am unashamably loving lockdown. I don’t have to go anywhere, I don’t have to be human, I can study in my PJs lying on my couch with my cat on my stomach … I still take the dog for a walk and get a bit of exercise – social distancing is a thing – but otherwise I stay at home. And I love being a home body.

This won’t be the case for a lot of people – there have been catastrophic job losses and people attempting to survive on unemployment where before they had decent paying full time jobs.

But for me, it’s a little bit of quiet bliss. A bit of down time to rest, relax, and study.

Adding Another – Probable Meniere’s Disease

Bones

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Lately I’ve been having a lot of difficulty with dizzy spells.  Sometimes these spells only last a moment – the kind you get when you stand up too quickly and the blood rushes everywhere but your brain – while others last for hours.

I can’t even remember how long I’ve been having these dizzy spells.  All I know is they’ve been going on for at least a few months.  When a new thing crops up I don’t jot it down, I just manage it and then forget about it.

I raised this issue with my doctor, and he said it sounds like Meniere’s Disease.

Meniere’s Disease is another one of those ones no one quite knows how it works.  It’s a disorder of the inner ear somehow – it’s thought to be caused by an abnormal amount of fluid in the inner ear, leading to abnormalities in balance.  It causes vertigo, hearing loss, tinnitis, and you’ll often experience a sense of fullness in the affected ear.

Which is, of course, my right ear.  Same side as my ‘atypical facial pain’ (atypical trigeminal neuralgia).  I’m starting to wonder if there’s something more going on here, so I’m sending my MRI off for a second opinion once I can afford the $400 consultation fee.

I’m writing about this today because today is a vertigo day.  I’m slumped on the couch with a cat on one side and a dog on the other and the world is swirling around inside my head.  If I close my eyes, and so lose my visual reference of the world (which isn’t spinning, funny that), I feel a bit like I’m tilting around in a circle.  My ‘up’ axis doesn’t quite correlate with gravity anymore.  And even with my eyes open, my eyes don’t stay fixed to one point very easily.  They keep sliding away with the vertigo, leading me to flick my eyes around what it is I’m looking at constantly.

Another effect of Meniere’s Disease is the loss of hearing in the lower frequencies, and the inability to separate sounds from one another.  We did a very basic hearing test which showed a dramatic loss of hearing in my right ear in the lower frequencies, as compared to my left, and to the higher frequencies.  I also struggle to separate noises, so if there’s someone cooking in the kitchen, I have difficulty hearing whatever it is I’m watching, or difficulty hearing my amazing human when he’s talking.  Same with if there is more than one person talking, I really struggle to hear either or.  It just becomes sound mush.

Once the COVID lockdown has eased I will get a full hearing assessment done.  This is more out of curiosity than anything else, because the low frequency loss in my right ear, along with vertigo, is a probable diagnosis for Meniere’s Disease.

Ah well, more weird things to add to the pile!