Month: June 2019

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

Bones

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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

Bones

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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.

Tegretol – Day 4

Bones

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Whoa, I have been through such a variety of side effects with Tegretol, almost a new one each day!

The first day was fine, just a bit of dizziness and loss of balance, nothing unusual.

Day two was worse, I was high and euphoric and so intensely itchy.  I was very careful not to itch anything and to only rub the areas that were itchy, but it drove me mildly insane.  The only benefit was, well … I was high.  So it bothered me, but not that much.

The itchiness began on my neck and shoulders and spread down my arms.  I couldn’t wear anything on my arms, because it went beyond itching into pain.  My legs itched, my back itched, my waist itched, even my breasts, and under them, itched!

When I lay down to nap that night, I noticed sharp stabbing pains up my arms and legs.  It wasn’t overly bad, more like the sensation of a decent sized needle, only in a larger area.  I still fell asleep.  Boy does the Tegretol help with sleep!

Day three I was high as a fucking kite, I was euphoric and joyous and I could have sat and watched the tree outside move in the wind all day.  I was dizzy, had difficulty focusing my eyes, and my balance was gone.  It was only through intense strength of will that I could walk straight.

Day four I’m still pretty high and euphoric and my balance is still out of it.  My tinnitus is louder.  My hearing is hypersensitive and I’m more reactive to sounds.  My skin is hypersensitive to texture, and even my usually comfortable clothing is a bit too much.  It would be a problem if I weren’t so chill and happy about everything.

Now one very important thing of note, if anyone is reading this blog specifically for the side effects I have been experiencing, Tegretol can induce some very serious and potentially fatal skin reactions.  If you, or someone you know who is taking Tegretol, are experiencing any itching, rashes, blisters (this includes in your mouth, on your tongue, or on your lips), or skin discolouration, THIS IS A MEDICAL EMERGENCY, PLEASE SEEK MEDICAL TREATMENT IMMEDIATELY.  These are symptoms that your skin is possibly going to begin to necrose.

I and my amazing human are monitoring me very closely for any rashes or skin discolouration in light of my itching.  Hopefully my skin decides to stay alive and in one piece!

Setbacks

Bones

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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.