Thank You To My General Practitioner

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I have been seeing my general practitioner doctor for two years.

I first remember meeting him as a depressed and anxious wreck during winter, where he looked at me and prescribed me antidepressants immediately, with a recheck in a couple of weeks.  I revisited a few times, both of us delighted that the first SSRI was a winner, and then I didn’t see him for a bit.

I didn’t see him until after my physio suggested my overreaction to injury may be fibromyalgia.  I described my symptoms to him and he said the words I hoped to hear:  “it sounds like you have fibromyalgia”.  We tried amitrip, then he suggested we try pregabalin, as amitrip wasn’t working for me.  It was a winner.

Then I got face pain and I went straight in to see him.  He said the words I really did not hope to hear:  “it sounds like trigeminal neuralgia”, but we treated it for a possible ear infection and possible shingles in the ear (because one of his friends had it years ago and it took a very long time to figure that one out).

I have visited him every week for so long the receptionist knows my name.

We’re now going for a private MRI and a public neurologist to get this sorted as quickly as possible, because I won’t be able to continue my education next year if this pain keeps up.

I have been incredibly lucky to get an amazing doctor first up.  He has never doubted what I have to say, never told me its in my head, always done additional research to ensure he is providing optimal care, and has taken the time and effort to personalise the treatment to my peculiarities.  He has been an amazing point of support throughout all of this.

So to my general practitioner:  thank you.  You are amazing, and you are improving my quality of life more than I can say.

I don’t want the life I lead … or the life I’m heading into

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I sat on a foot stool in Spotlight, exhausted and in a not inconsiderable amount of pain, waiting for my mother to extricate herself from the yarn department.  I had bought two balls of lovely soft cotton and was contemplating what to do with them when my thoughts moved to when I would be able to do anything with them.

You see I have this week off, then a week of work experience, then I’m back at uni, which just sort of continues until December of next year as we go straight from this year into our final year, do not pass go, do not collect $100.  I have very limited time to do things that I enjoy, and usually by the time I get to them, I’m too exhausted to do them.  I don’t like this life that I lead.

But I’m sucking it up and doing it because it will get me into a career I am infinitely passionate about and absolutely what I should be doing with my life.  Unfortunately it’s also a career where overtime and overwork is just par for the course and rather expected of you.  Especially in our final year of university.  We’re not ’employees’, so there is no legislation preventing them from requiring us to be in clinic from 7am to 7pm, or later, or from going straight from that to an overnight shift.

I really don’t like the life I’m headed into.

But like all things, there’s the ability to mould that life into something you want.  In my case, being stern about in clinic hours and my own requirements, and ensuring that I will not be failed on the basis of only being able to be in clinic for reasonable hours.  And after university is finished, setting up alternative income streams (I almost feel gross saying those three words, they sound so … smarmy and corporatey) so that I can work part time, and find a place that will allow me to work part time.

It was a sad realisation, though, in that shop.  It’s the career I’ve worked most of my life towards, and my own body is making it so much more difficult than it needs to be.  My body is preventing me from doing what I want to do to the fullness I want to do it, and I’ve had to seriously adjust what I want to do to compensate that.

It seriously sucks.

So I’m going to allow myself to be a sad sack of potatoes about it for a little while, then grab myself a cuppa tea and start plotting an easier future.  My life won’t give me exactly what I want, so I will make a suitable compromise – one where I can still pursue the career I want, without exhausting myself to the point where I can’t do the other things I want to do.

I am doing good enough

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I find this notion of “I am doing good enough” incredibly difficult to define and accept.  As someone who has had chronic fatigue and chronic pain for over half her life, I don’t know what it’s like to not have it.  So, when I look at everyone else zooming around, doing so much, having all this energy, I think to myself how do they do that? why can’t I?  I still can’t tell myself I have a chronic illness that reduces my ability to do everything.  Not I have a chronic illness that stops me from doing things, because I am as stubborn as a mule and will chop my own nose off to spite my face, and if someone, even myself, tells me I cannot do a thing, damnit I will do the thing.

I still can’t tell myself it’s okay, I am doing as much as I can, and I am still doing well.  This is because I am comparing my achievements to able-bodied people.  Not only am I comparing my achievements to able-bodied people, but I am in a course where my achievements are compared to able-bodied people.

I am in one of the most difficult and gruelling degrees in the world, one that is hard for even able bodied people to undertake.  I am allowed to be doing not as well as them.

But I don’t see that.  I don’t think that.  I’ve gone my entire life thinking, and being told, that I’m normal, that I’m just lazy, that I just need to try harder, work harder, do more.  It’s a mentality I’m struggling to shift.

I suspect it’s a mentality many people with chronic illnesses and/or disabilities have difficulty with.

Sometimes I manage to remind myself.  Sometimes I even manage to feel it in my heart, instead of just in my head, but that goes away with so much as a stiff breeze or an assignment.  I try to keep up with my more able-bodied class-mates.  Sometimes I succeed.  Sometimes I struggle.

But at the end of the day, I am passing.  I would like to be getting ‘average’ marks, and each time I think that, I tell myself I am doing good enough.

Setbacks

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Sometimes things keep piling up and all you want is a break.

It’s been one of those months.

One of my beloved animals became very ill.  We spent a lot of time going to and from the emergency after hours.  She was admitted for a few days.  Fortunately she is now well on her way to recovery and back to shouting at me through the door as soon as my alarm goes off (“FEED ME, FEED ME HUMAN”).

Then my face started to hurt.  Just one side, around the temple, spreading to my zygomatic arch and down my jaw.  I went to the doctor, who discovered a red tympanic membrane (ear drum), so put me on antibiotics and NSAIDs with a recheck in 48 hours if the pain hadn’t gone away.

You guessed it, the pain hadn’t gone away.

Revisited and now I’m being treated for shingles (chicken pox take two) and trigeminal neuralgia.

Unfortunately I suspect it’s likely to be trigeminal neuralgia.  The tympanic membrane is looking much better.  I have no rash or blistering associated with shingles, and the pain is progressing from a tooth ache to stabby stabby.

I’d been stable on my new bunch of meds for quite some time, and I was quite liking it.  I’m not entirely pleased with this new spanner in the works, or the new medication (which makes me really sleepy).  But it is what it is, and I’m just going to have to live with it.

The Unseen Scars of Sexual Abuse

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I was sitting down to write about the anxiety of needing to do things all the time when my flatmate began cleaning the oven.  This is a completely normal and expected thing, we have a flat inspection coming up, and we’ve just spent the last few days making sure everything is cleaned and put away.  There’s just one problem: due to a defect in his septum, my flatmate has difficulty breathing and breathes very noisily and often with an open mouth.

That’s fine… for anyone else.  For me, it’s a trigger.

I was sexually abused by my ex’s best friend.  There, I said it.  It’s a hard thing to admit.  There is a lot of shame around it, shame that I did not realise what was happening at the time, that I allowed myself to get into those situations, that I was such a doormat.  I’ve told two friends.  I haven’t told my partner.  It’s not something I am brave enough to be open about yet.

Intellectually I know I am not at fault.  I had been in an intimate relationship with a narcissist for at least a year by that point.  My semblance of self, already weak after the previous narcissist relationship on the back of growing up with a clinically depressed mother and a loving but not really on hand father, was virtually non existent by this point.  I was an undiagnosed aspergers woman, and incredibly vulnerable.  It was not my fault.  It is not my fault.  A predator saw the vulnerability and took advantage.

It’s still hard to talk about.  So I’ll throw the story out to the internet, hiding behind my perceived anonymity (I know full well ‘anonymous’ only goes so far unless you take internet anonymity very seriously).

Our house was the ‘party house’.  We would have parties almost every other week at our house, no matter what house it was we lived in, and that was fine.  We used to do various illicit substances, as one does when one is young – nothing hard, nothing technically addictive, and not often enough to get addicted.  It was the usual fun shit from the raver scene.

And it was, it was super fun.  Until he started taking advantage.

I don’t remember when it first happened, but I do remember which house we were in at the time.  He began to pester me to give me a massage.  And pester, and pester, and pester, until me, being the naive, happily high, aspergers person I am, said okay.  So we went up to the bedroom I shared with my partner, I’d lie face down on the bed, and he’d massage my back.  It was just a massage.

He breathed heavily while he gave it.

This continued at subsequent parties.  He convinced me to take my t-shirt off so he could give me a “better massage” and “you can take your bra off if you like but I understand if you’d rather keep it on”.  I always kept my bra on.  My ex would, every single time, walk into the bedroom to “get something” and stop and pause and say in a high pitched voice (that I only now realise as fake) “I’m totally okay with my best friend massaging my topless girlfriend in my bed”.

Looking back at it I have to believe they were both in on it, because he never left a party to “get something” from our bedroom unless his best friend was giving me a massage.

This continued.  For years.  His best friend would pester me until I gave in and would give me a back massage with creepy heavy breathing.  It wasn’t until the later massages that he would push his erect penis (in his pants) against my arse while giving me a massage and lean down like he wanted to kiss the back of my neck.  Thank fuck he never did.  I stopped letting him give me massages after that one.  It made me sick.

A number of parties later, while completely off his face on booze (he had, and probably still has, an alcohol problem), he grabbed me around the waist and dragged me onto his lap where he immediately started grinding his erect penis (in his pants) against my arse crack with some amount of force.  I got his arms off me and stood up and went off without looking at him and blocked the incident from my memory.

I think he might have stopped after that.  I can’t quite recall.

So now heavy male breathing is a trigger for me to lock up and want to vomit.  Unfortunately for me, my lovely flatmate sometimes triggers this.

At least I have noise cancelling headphones.  I should also look into some really good therapy for this.