Adding Another – Probable Meniere’s Disease

brannon-naito-09kKH2442z8-unsplash

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!

I Got A Dog

jamie-street-uNNCs5kL70Q-unsplash

As the COVID lockdown loomed, I sped out into the back country of New Zealand to one of the largest sheep and beef stations in the North Island.  There, I was met by a woman and a dog.  A dog named Flash.

A dog who will, hopefully, become my “helper dog”.

I call him my “helper dog”, because here in New Zealand we have very strict legislation about what can be classified an Assistance or Service Dog.  Despite the training he will receive, he cannot be classified as an Assistnace Dog until one of the named charities certifies him.  There is one named charity that certifies owner trained dogs, and they are not taking new applicants at this time.

But that’s okay.  I don’t need him certified for him to help me around the home, or at work, or on the farm.  I just need him to be gentle, willing, and trainable.

After two days with him I can confirm he has all of that, in absolute spades.  He is a collie cross, a purpose bred heading dog, bred to stare at sheep until they move.  He just … didn’t do sheep.  At all.  So at the grand age of one, he was fired from basic training, and passed over to me.

It’s early days yet, but I am cautiously optimistic that he will fit in with the rest of my hairy horde and complement our lives.

An Injury Is Never Just An Injury

nick-fewings-SG9Ycz2uqGs-unsplash

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!

Your Feelings Are Not More Important Than My Disability

absolutvision-UudGNHJdNSo-unsplash

I am a people pleaser.  Always have been, probably always will be to at least some extent.  Other people’s feelings are simply more important than my own needs, and I will go out of my way to avoid doing what I think might hurt someone else’s feelings (even if it’s unlikely to actually hurt their feelings).

I also have a warped sense of what will hurt someone else’s feelings, but that’s for another time, and probably a lot of alcohol.

Regardless, I put other people’s feelings above my own needs.  And I do that now, even when my needs are great.

I use a cane to get around.  I’m fine getting around home, but if I’m walking around places like university, or the mall, I need a cane.  It hurts to take little itty bitty steps.  My happy walking is huge swinging steps where I can really stretch out my hips and swing them.  I still need a cane for that, because to do it best I need to keep my hips nice and loose, which negatively affects my balance, but I can do it for a lot longer and it’s a lot less painful.

But yeah, I need a cane to get around.  I have to be careful how I get up off chairs, sofas, and the like, because I have balance problems.  I often have to catch myself with my cane to make sure I don’t fall over.  It relieves a lot of pressure on my hips.

I’m looking into getting an Assistance Dog.  Well, a dog that I can train up to help me with my mobility issues and in the future become certified as an assistance dog when a spot becomes available to do so.  Except for one, big, problem.

My amazing human dislikes dogs.  He does not want me to get another dog.  He gets the pinchy face and says he could not cope with another dog.

Now under normal circumstances that’s understandable.  But these aren’t normal circumstances.  This is a dog that will help me with the mobility and balance issues I have now, and will help me with any fluctuations of my mobility and balance issues (i.e. what I consider to be my inevitable decline).  This is not a pet dog.  This is a working dog.  A service dog.  A dog that provides a measurable benefit to my wellbeing.

I had to say, very explicitly, that it hurt that he could not see past his own feelings to support me in something that will benefit my life and wellbeing, both now and in the future.

Now some people (like my mother) will see that as a very selfish thing, and yes, it is.  Because it’s more than just his feelings – I will also be imposing on his time, he will need to develop a solid working relationship with the dog, he will need one on one training to change his current habits, and he will need to continue to work with the dog.  I’ve suggested agility as suitable work for them both, as it involves issuing commands and having them followed while requiring no contact between the two.

Except that it’s a small imposition to him for a huge benefit to me.  I am disabled.  I will likely always be disabled.  I will likely get worse.

No one is going to stay around with me and help me get up from the sofa, or stay home and cuddle me on the couch when I’m having a flare up day.  No one is going to follow me around uni making sure I don’t fall over, or help me up the stairs.  No one is going to be there when I need help getting out of a chair, or getting up from the ground.

I have to fight to do these things.  I have to fight my own body, I have to fight gravity (damn you and your apples!), awkward chairs and even more awkward canes.

But a dog can alleviate some of that.  A dog may be able to alleviate enough of that that I have more energy to spend on other things.  There comes a point where feelings are overruled by benefit to self.

This is that point.

He’s allowed to dislike dogs.  He can continue to dislike dogs.  I am still getting an assistance dog, and he can either work through his feelings about dogs to be fully onboard and work with me and the dog, or he can go.

Because at the end of the day, my disability is more important than his feelings, and if he cannot work past his own feelings to support something that will improve my disability, then he is not right for me.

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

mr-tangent-UVEqiVdEkdQ-unsplash

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.