An Injury Is Never Just An Injury

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When you have fibromyalgia, or trigeminal neuralgia, an injury is never “just” an injury.

Three weeks ago a door viciously attacked my little toe.  It was … well it wasn’t broken, and that’s the only positive thing I can say about it!  So the next day my fibromyalgia goes “HAH, PETTY TOE, LET ME SHOW YOU THE TRUE MEANING OF PAIN” and everything from my waist down felt swollen and heavy and on fire.  My joints all the way up to my hips were stiff.  I lay in bed and read trashy fanfiction to distract myself from the pain.  The day after that the burning heavy stiff sensation was only in the leg with the bung toe, and after that it went away completely.

So fibromyalgia is a real asshole when you get hurt.  But to top that off, whenever my fibromyalgia does a flareup, my trigeminal neuralgia does a flare up!

Well today, while sorting rams, I got smacked in the nose.  Fortunately by a hand and not a ram, but still, it was a good thwack.  I went and put cold water on it (the best we could do out on farm) and promptly had a meltdown.

The injury is on my face.  The injury is, specifically, on my nose.  The inflammation will put pressure on the second branch of both trigeminal nerves, and that’s likely to set off my trigeminal neuralgia which I had only just settled down after a volcano pimple on my jaw decided to set the whole thing off (why, oh why, does my face do this to me?).

So I had an anxiety attack, which is kind of understandable.  I don’t want my fibromyalgia to flare up.  I don’t want my trigeminal neuralgia to flare up.  I don’t want to be in pain.

But I don’t really get much of an option, and not doing the things that I love to keep myself safe from injury is also not an option … so I have to be kind to myself when I am injured.  And reduce inflammation as much as possible!

For now it is definitely setting off both trigeminal nerves, but it’s only set off the third branch of one side and mildly set off all three branches on the other.  Here’s hoping fibro doesn’t kick in tomorrow and make all the joints in my upper body stiff and achy!  I’ve got stuff to do!

My Head Is Not A Safe Place Right Now – And That’s Okay

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I went on holiday last week to the most beautiful place on earth, the one place that has stayed with me throughout my life.  The one place that I truly feel at peace.

I had this grand idea that I would spend my days relaxing, spinning, and otherwise existing in a zen-like state.  In my head I was going to become one with myself and reach … while not quite a higher state of being, certainly a more peaceful state of being.

It, um, did not go well.

The first two days I was just so relieved to exist in my little slice of heaven that it filled me with a false sense of security and achievement, because I was almost zen-like.  I was decompressing, and I was able to spend a good 30-40 minutes just staring at the ocean in a state of quiet.  I think it was more that I was shell-shocked at the sudden change in stresses that my brain just blanked out on me, leading me to a false quiet.

Then my brain came back, and with it my anxiety, and oh boy it was not a nice place to be!  I hadn’t brought any reading material with me, so I vainly scrambled for some fanfiction escapism, but even that fell flat.  I had a burning need to be doing anything but what I am currently doing in my chest, and my brain bounced around the walls of the cabin maniacally.

But I continued to push for that zen aesthetic, that peaceful state of being.  I was firm in this belief that this is the state I should be in, it was the correct state, and I was wrong for not being able to achieve it.  It took me two days of struggling to correct my thinking.  My head is not a safe place to be in alone, and that’s okay.  With that admission, with the acceptance of this fact, I was able to relax once more and implement my distraction regime.

Distraction helps.  Depending on how bad my brain is depends on what kind of distraction I use – I have ‘high value’ distractions and ‘low value’ distractions.  I chose to hit it with all I’ve got.  I’m on holiday, after all, I want to be enjoying myself!

So I cracked out my gaming laptop and put on Two Point Hospital (the spiritual successor of Theme Hospital, my favourite game ever) and listened to podcasts.  With their powers combined I was not left alone in my head and all the bad thoughts ricocheting around quietened down.

Sure, I felt guilty about spending my time inside playing computer games instead of sitting peacefully and admiring the beautiful view, but I realised that my mental health needs were more important than my belief that I must make the most of my location.

I’ve just realised, as I’ve been typing this out, that I have a big Fear Of Missing Out.  It has been drilled into me that I must make the most of every opportunity I have been given.  If I am in a new place, I must always be out exploring it.  If I am in a beautiful place, I must always be out admiring it.  If I am invited out to dinner with friends (which never happens because all of my friends are students, so we’re either too broke or too busy), I feel like I must go to not miss out.

It’s all a lie.  Because while I may be constantly out exploring a new place, I am also missing out on wellbeing and ensuring my physical needs are balanced.  While I may be constantly admiring a beautiful place, I am also missing out on ensuring my mental health needs are met.  While I may be going out to dinner with friends, I am missing out on storing energy to deal with things the next day.

So I guess what I’m saying is – it’s okay to not be okay.  Do what you need to do, regardless of where you are.  If you can’t do the zen thing, don’t force it!  Work with what you have, rather than what you think you should have.

And anyone who says otherwise is wrong.

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.

How The *Bleep* Do You Exercise With Fibromyalgia?

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The short answer is:  very slowly and very carefully.

The long answer is:  well…

I don’t really have all of the answers, I only have the answers that have worked for me, and I have a slightly higher than normal baseline fitness, so I’ll tone it down a bit more.

On a side note, I don’t think I’ve ever looked that happy to be exercising.  Or that good while doing it.  I’ve never enjoyed exercise, especially running, because it causes so much pain.  But these days, alarmingly, I’ve been running.  It still causes so much pain but I balance it by doing a day of running and a day or two of non-impact leg exercises.

So here’s how I have found exercising works:

Do Some Sit-Ups

Park your butt, shove your feet under a sofa or a chair or something, and lower your back a little bit.  Don’t let your back hit the floor!  It’s so much harder to do a sit up from there than it is from just above it!

Lower your back to the point you’re capable of, even if it’s only to a 45 degree angle with the ground, stick your arms across your chest like you’re imitating Tutankhamun’s sarcophagus, and haul yourself back up to your knees.  Do that … twice.  Maybe three times.  It’s your first day, you’re gonna do other stuff.

You’re also allowed to cheat if you’re having difficulty.  Use the fact that your feet are under a weighted object to leverage yourself back up.  You’re still using your muscles!

Don’t Do Push-Ups

I’ve found these just too much, personally.  Even though I’m lifting weights (hahaha look at me, ‘lifting weights’, I’m lifting a 6kg dumbbell 10-20 times a day), and even cheating, the I can do maybe three.

If you can do them, good on you, but honestly I’d skip these ones.

Lift Weights

Yes, you too can get the rippling muscles of a body builder!

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Although I’d maybe hold off on quite so many weights.

Get yourself a set of 0.5 or 1kg weights.  The cheap ones that are all hard plastic and such.  If you’re feeling like splashing out, get yourself a set of light dumbbells, too!

Hold those weights in your hand, stand with feet shoulder-width apart and your knees bent for support, and slowly lift one of your arms directly out from your side … without counter-balancing!  Tighten those stomach muscles!  Lift it until it’s in line with your shoulder if you can and hold it there for a few seconds, then slowly drop your arm back to your side.  Do it with the other arm.

Do your typical bicep curls.  Do just enough that you can feel the start of muscle burn or fatigue, and stop.

Then do this one:alora-griffiths-LOnMc8Rp1Qs-unsplash

I don’t know what it’s called.  I actually half climb onto my sofa or my arm chair to do this.  I have one knee braced on the sofa cushions and the corresponding arm on the sofa arm, my other foot on the floor, and I swap around with each side.  It takes all the strain off my hips and legs and allows me to just focus on my arm.

Lift Those Legs

I did pilates a long, long time ago.  Whenever I can’t run, whether that’s because I’m having a bit of a painful day, or it’s peeing it down with rain, I lift my legs.

I lie on my side with my spine straight and my hips straight up from the floor – if you’re doing this, spend time feeling, with your hand, where your hips are in relation to the floor.  You want those hip bones stacked on top of one another.

I bend my leg on the floor a bit for stability and use my free arm to brace.  I then slowly raise my other leg up, sometimes as high as I can take it, other times just a little bit, and then let it slowly back down.  When I started, I could barely lift my leg, and that’s okay.

If I’m feeling really game I’ll even do circles with my leg, but I’ll do them really slowly so my body doesn’t rock around.  The aim of the game is for your body to remain completely stable while you’re doing all these things with your legs, so only do what you can do!

Stretch

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This is probably the most important think you can do with fibromyalgia.  A lot of the pain is from stiff muscles, because when we’re sore, we don’t want to do anything.  In particular, a considerable amount of pain is from our stiff backs.  I physically roll out of bed each morning because I cannot ‘get up’ like a normal person.  I’m lucky enough that my bed is almost waist-height, so when I roll out of bed, I can just stand up.

This takes a lot of time to un-stiffen, and doing exercise or stretches with a stiff back is painful, so wait for your body to wake up before you do any of this.

But make up your own stretches.  Stretch your arms out in front of you and arch your back.  Stretch your arms out to the side of you and really open up your chest.  Wiggle your hips!  As you’re sitting on the couch, push your leg out to the side and flex and extend your foot.  Or just straighten your legs and flex and extend your foot.  Rotate your foot around the ankle axis.  Bend your leg and open and close it to work your hip.

Stand up, bend your knees, and slowly (very very slowly, and only after you’ve been awake and moving for quite some time!) reach for the floor.  If you don’t have that much balance, do it while you’re sitting!  Park your butt near the edge of the couch, straighten your legs out, and slowly reach for your toes.  Keep your head down as you are stretching down – your neck is part of your spine!  You want to keep that spine in line!

Walk

Even if it’s pottering about at home, or in the garden, get up and walk.  Even on your worst days, spend a few minutes on your feet.  Yes, going to the bathroom counts as walking!

Cheat

Can’t fully do an exercise?  Cheat!  Make it easier!  Half-arse it!  Change the exercise to suit where you’re at!

If you’re struggling with the weight lifting, just hold the weights!  Spend a few minutes each day tightening your arm muscles and loosening them again (I’d suggest doing this with your elbows bent).

Can’t lift your leg?  That’s totally okay!  Bend both of your legs and stack your feet on top of one another and open your legs like a clamshell like that.  Can’t do that?  Sweet as!  Make something up.

Having a bad day?  Just stretch!

Got a spot that always hurts?  Do exercises around that spot.  For me it’s my hips – they always burn.  So I do exercises that stretch my hips, but don’t involve me putting much strain on them.

Yes, it’s going to hurt

Start off only doing one or two things a day.  Do that for a few days, and if you’re not hurting more than usual, do a bit more.  Build up from there.  If you go in whole hog you’re gonna hurt like nothing on earth and you’re not going to exercise.  But if you do one or two things a day, and build up from there, you’ll find that within a few weeks you’re able to do more.

And the way I see it, I’m going to hurt anyway, a little bit more pain isn’t going to make much difference.