The Importance Of The Outside

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I moved house three months ago.  Well, I should say, we moved house three months ago.  We moved from a small, 70s built house with a very small lawn (2x3m, with a 1.5x10m run down the side) into a large, 60s built house with retrofitted double glazing, a catio (a patio that’s fully enclosed to allow cats outside time without them being free-roaming), three lawns, multiple edged and established (but overrun and very confused) gardens, a rose bush taller than the house, and two raised garden beds fenced off down the back.  We have apples and pears, an olive tree (I still don’t get this one), so many magnolias of different colours, roses popping up out of trees, and a loquot.  We also have a fig tree stump with a lone fig stubbornly growing on it.  Oh, and a grape vine!

This garden is a mishmash of things and it is very overgrown with ivy and jasmine and weeds and I have never gardened before in my life.  The closest thing I had to a garden before now is my small collection of succulents who, despite all neglect from me, have continued to survive.

Now I have an established and overrun garden to manage.  And I never knew how much I needed it until I had it.

I grew up in a large, old, draughty villa with a 1/4 acre section and a veggie patch.  There were trees I would scale all the way up until I was too “cool” to do so (around aged 15-16, I was a slow bloomer), a cinderblock I would use to contain any fires I lit just because I could, and an overgrown section down the back end of the garden that I could hack at with my trusty home made wooden samurai sword (whittled out of a branch courtesy of one of my friends).

My holidays were spent at the beach.  We had a small, lockwood holiday home within 5 minutes walk of a quiet beach.  There was no TV, no dialup internet or world wide web (in fact, some of this took place before those days!), and mobile phones were still a pipe dream.  We had to make our own fun.

What I’m trying to express here is that I grew up in and around nature in every part of my life.  I was a hippy child, a wild child – give me some rocks and I’d scramble up them faster than you could say “that’s a big rock”, and I would try to climb every tree.  Most of the time I was even successful.

As I got older I withdrew from the outside more and more, finding solace for my teenage angst on the internet and the people there.  I had an Angelfire Page – actually I probably had about five.  I was onboard when MySpace first came out, and Live Journal.  I was on Yahoo Groups and DeviantArt.

I stopped going to the beach for the holidays.  I stopped going outside.

I moved into a tiny little cupboard of a room in an awful little apartment with only concrete and horrifically overgrown “gardens” to speak of.  Then into a house with a single tree and a lawn you couldn’t even swing a cat in.  Next up was a house with a bush back section and a small raised lawn, then apartments.  I became “modernised”.

That little wild child who lit fires in the garden and ran on the beach and screamed into the wind because it was fun just … withered.  And died.

Looking back knowing what I know now, I suspect a lot of that was to do with my fibromyalgia, the incredible stress of working full time in a highly demanding job, and the stress and anxiety of being with a narcissist.

Regardless, I neglected an important part of me, that little hippy girl, and it took moving to this house to realise it.

She’s slowly coming back, that dirt grubber, with every step I take on soil without shoes and every weed I pull out without gloves.  With every time I sit in front of the open doors to the catio and breathe in the fresh country air and admire the green that creeps everywhere.

She is slowly coming back, and with her, I become more grounded.  More robust and at peace with my life.

The importance of the outside is, to me, immeasurable.

Deep Tissue Massage for Fibromyalgia

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My acupuncturist had a family emergency last month which meant he was off for about three weeks.  During that time I had some fairly considerable trigeminal neuralgia flareups and, in a pain induced panic, decided I must see someone … just not someone with needles.

I looked around online for massage therapists near me and stumbled across this one particular one that had good reviews and wasn’t overly expensive.  I got an appointment for the next day and went in, hoping some massage would ease the fire in my face.

It didn’t.  Oh boy did it not.  What it did do, however, was loosen some knots that haven’t been released in decades, knots my shiatsu massager just would never be able to reach.

Now I’m not talking about your normal relaxation massage where you go in and they kneed you for an hour.  No, I’m talking about the massage where the therapist actively finds the painful spots and then digs her thumbs into them for an hour.  It’s painful.  I make some truly spectacular noises and groans of “oh god” while she’s doing this.  It’s amazing.

I left feeling battered and bruised and nauseated, like I always do with any body work that releases tension, but after a few days I felt revivified!  I went back the next week.

This time she discovered even more knots.  See, now that she’d begun relaxing the superficial layer, she was able to find the deep knots, the ones that cause problems.  The ones that haven’t seen the light of day (or rather, felt the “tender” touch of a massage therapist) for decades, nay, eons!  Well after this session I felt so light headed and dizzy I couldn’t quite function for the rest of the day, or the next three days after that.  She’d knocked something loose in my back that had really done my head in.

I’ve just revisited her today and I am definitely noticing an improvement in how my body feels, despite the pain from coming off Tegretol (another blog post in and of itself!).  I’m also noticing an improvement in how my body moves, which is really rewarding.

My theory is this:  I have a lot of knots.  I have a lot of muscle tension.  I have a lot of muscle fuckery.  This will all be amplified by fibromyalgia, causing me both excessive pain, and excessive stiffness.  If I can work out these knots, release this tension, and improve my muscle health through deep tissue massage and gentle exercise, this will reduce the level of pain I will experience from fibromyalgia, because there is less muscle pathology.

So far I think it’s working?  It’s a bit hard to tell, what with exams, the stress of losing a friend, and coming off Tegretol.  To be honest I’m just throwing everything I can think of at my fibromyalgia and trigeminal neuralgia and hoping something sticks, so identifying exactly what is having exactly how much of a positive impact is going to be a bit tricky.  Here’s hoping the deep tissue massage sticks!

Either way, it’s making me feel better, and that’s the most important thing right now.

This Is My Life Currently

christopher-windus-ys_PVhkEC6c-unsplashThe alarm goes off.  I groan, hit snooze, and roll over to steal some warmth from my amazing human who also doubles as a walking space heater.  The snooze alarm goes off and I whinge some more and convince myself I’m only going in for a little cuddle.  Several minutes later I get a nudge awake and I roll myself out of bed.  I stand up.

And promptly tilt over into the dresser.

That’s fine, there’s only a few centimetres between where I stand and the dresser, I’m not hurt in the least.  I stand myself back upright and lean on the bed as I grab my pants, put them on carefully one leg at a time (I’m also deeply inflexible first thing in the morning, so this is sometimes quite difficult), put my jumper and slippers on, and totter out.

My right eye is just a blur, like I’m not wearing my glasses.  My left eye works fine.

I stumble and list several more times on my way to the kitchen, but I manage to catch myself each time, usually with my feet, sometimes with my hands on a wall.  The cats yell at me to feed them.  Kettle goes on first, dog loses her shit because I’m up and that means breakfast, and the cats continue to yell at me.  They all have me whipped.

I continue to teeter my way around the house, feeding the various beasts, making my coffee, my amazing human’s coffee, my breakfast, until at last I can sit down and not expend additional energy catching myself as I start to tip sideways.  I subconsciously plan my routes to ensure I have either something structurally sound I can catch myself on, or something soft I can fall on, as much as possible.  I’m glad my floofy creature (cat, she rules our lives, and she knows it and loves it) is more interested in floofing in front of me – tail up and elegantly tipped to one side, glancing over her shoulder as she chirrups to make sure I’m following her – rather than doing a surprise floof directly in front of / under / between my feet as I’m walking.

By the time I’m seated with my breakfast and coffee my right eye is back to normal, if feeling uncomfortable (I’ve been to the optometrist who says it’s all beautiful and fine), and I spend my mornings relaxing and waiting for my body to stabilise a bit more.

Throughout all of this my jaw burns.  Well, not so much burns, as feels like it’s being eaten away.  It’s a diffuse ache with no distinct boundaries but a tapering off around a central pain.  Sometimes it’ll crawl down my mandible and into my chin.  Sometimes I’ll have flashes of sharp pain across the roots of my maxillary teeth.  More often than not I’ll have a frozen burning patch along the side of my nose.

I’ll browse through Facebook on my laptop.  My fingers will lightly spasm as I go through, so I have to make sure the mouse is off to the side of the screen so I don’t accidentally click on something.

After a little while I’ll get up, wind my way to a shower, and get on with my day.  I will have difficulty recalling things I did moments ago.  I will stumble over words.  My brain will supply me with an alternate word for the one I’m wanting, and I will have to logically work my way through an number of other words before I get to the correct one.  I will sometimes have intention tremors.

If I’m lucky, the wobbliness will be done by 10am.  Other times it lasts all day, and I will have to rely on my cane for balance.

I don’t know how much of this is the Tegretol or if this is an increasing severity of whatever is causing my trigeminal neuralgia.  Hopefully I will find out soon!

I Have Bilateral Trigeminal Neuralgia

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In my right jaw, at all times, I have deep burning ache of bone being eaten away.  It isn’t, but that’s what it feels like.  I have an ache along my brow ridge.  The area around my temples incredibly sensitive, and makes putting on my glasses hazardous.

Sometimes it feels like a tooth is being pulled with limited analgesia.  On bad days, my zygomatic arch burns.  Sometimes the side of my nose gets a sharp stab.

Now on my left I have occasional flare ups of sharper pain coursing down my jawline and along my zygomatic ridge.

I am currently on 600mg pregabalin (300mg twice daily) and 600mg tegretol (200mg three times daily).  I’m maxed out on pregabalin, and only half way to max on tegretol, but I do not tolerate tegretol well and cannot go any higher.

Sitting around not making any faces or talking, the pain is tiring but manageable.  Talking causes pain.  Some eating causes pain.  Smiling and laughing causes pain.

It’s exhausting.  Explaining it again and again (often to the same people!!) is exhausting.  Being in pain is exhausting.  It’s never ending.

But the worst of it is the medication (tegretol) for treatment of the trigeminal neuralgia cause additional fatigue and aches!  Just what I need with fibromyalgia.

Well, I’ve gotten my referral to the neurologist, and we’re getting an MRI done (likely private, given how long it’s taking for my referral to be triaged!!), and then we’ll see what we can operate on.  Here’s hoping the public system doesn’t make me wait.

Doubled Up on Tegretol

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Adjusting to my first dose of tegretol was hard – read all about it here.  My trigeminal neuralgia has become too much to be contained on the 400mg dose (200mg twice daily), and so I attempted to increase only the morning dose, so effectively taking 600mg (400mg in the morning, 200mg in the evening).

This did not work.  I knew by day two that it would not work, when I experienced the delightful feeling of having a tooth pulled that evening.  It was not pleasant.

I have now fully doubled my dose of tegretol to 800mg daily – 400mg twice daily.  I am once again going through the adjustment symptoms, fortunately without the intense itching (so far!).  I have lost my balance.  I am hypersensitive to noise and touch.  My brain doesn’t quite operate right – I lose words with monotonous regularity, forget what I’ve done just moments before, and I can space out and stare at nothing real well.  I seem to have lost my grasp on time, as well, not that I had much of a grasp on it in the first instance.

Fortunately this amount of tegretol has had a considerable (positive) impact on my pain levels.  I’m not permanently at the dentist, hoorah!  I still have some aches around the angle of my jaw, across my zygomatic ridge, and from my temple up along my eyebrow.  That one is the worst at the moment, from my temple up along my eyebrow, and there’s not really much I can do about it other than use high value distractions.

The plus side is my doctor is referring me to a neurologist, hopefully the wait list isn’t tremendously long and I can get in promptly.  I have another appointment with him on Monday to see how we’re going with the tegretol and to discuss everything.  He’s quite concerned that there’s something impacting more than one cranial nerve, so every visit so far he’s checked my field of view and my retinas.  He never really comments on what he finds.  I’ll try to remember to ask next time.

Uni starts up again on Monday, but I’ve made the executive decision to do as much as I can from home while I’m sorting out this pain.  I am on surgery this week, so I’m going to try a novel idea of getting those adhesive heat packs you can get for period cramps and sticking it on my face.  I may have to create a barrier between my skin and the heat pack, so I’ll chat to the people at the pharmacy about that.  You get incredibly inventive when you have to be in sterile gowns for 5 hours in a cold room.  (I wear polyprops AND leggings under my scrub pants to stay warm!)

Oh yes, another side effect of the tegretol is that I lose my filter and I tend to blither.  Can you tell?