Tegretol – Day 4

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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

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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.

Accepting Limitations

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I’ve been feeling pretty darned good these last couple of weeks.

I’ve had more energy.  I’ve had more cheer.  I’ve been jogging (gasp) – very slowly and only for a very short amount of time.  I’ve been generally doing more.  The pain has been at a manageable level – never completely gone, but gone enough that a mild to moderate value distraction is enough to put it out of my mind.

Yesterday morning we had a start time of 7.00am.  I was up at 5 so I could get everything ready and be there by 6.45am.  It was early and I was stiff and sore already – not good considering I would be in a stressful situation and on my feet and moving constantly for the next 3 hours.

It was hard work – there was a lot going on, mostly things went well but we had a few panics, and I was well occupied.  I lasted until about 9.30 when the fatigue hit, and by the time we were wrapping it up at 10 I was in a lot of pain and just absolutely glazed.  We cleaned up and left for our lecture from 10.30am to 12.00pm, which I am fairly sure I slept through with my eyes open.  We had our one hour lunch break, and then were back in from 1-3.

By the time I got home at 4.30 I was barely capable of seeing straight.  I slept like the dead last night.

Today I’m still exhausted and in pain.  I’ve spent most of the morning lying down with my legs up on the back of the couch, which seems to be the most comfortable position for me when I’m in pain.

This has been a reminder that I have limitations, and my limitations are a lot closer than normal people’s limitations.  This has been a reminder that I have a chronic debilitating condition that causes fatigue and pain when I overreach myself.

This has also been a reminder that I need to communicate this to my team and the teaching staff more promptly so that I am still able to do what I need to do, but I don’t get to point of burnout like I did yesterday.

I still haven’t quite accepted that I can’t do everything other people do.  I still need to be reminded by my dear friend that I can’t just build a cabin on wheels in a week or two (that’s another story).  But I’m learning, and with each reminder I learn more.

Massage Therapy and Fibromyalgia

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I have always found I benefited from a deep tissue massage.  When working in my more boutique workplaces, we would have heavily subsidised 15-20 minute back massages every fortnight in the office.  The good ones would get right in there with their thumbs and elbows, while the not so good ones would give a formulaic “back rub”.

Unfortunately for me the waiting list for the local (good) masseuse is … rather long, and they’re not exactly cheap.  Which is good, they are worth the money, only it’s money I don’t have for regular massages.  So when a shiatsu massage pillow came up for sale on one of the facebook groups I’m on, I leaped at the chance!

I’ve had it for just over a week now.  I’ve used it every night.  It is amazing.

The first night I wholeheartedly over did it.  I slowly worked my way down my entire back, pressed the shiatsu balls to my hips and legs, to the pressure points around my knees.  It was too much at once, and while I felt sick the next day, I also felt less painful.

I’ve used it almost every night since and I have seen a tremendous improvement in my overall wellbeing.  I typically spend an hour slowly working my way down my back.  I really notice when I haven’t done my lower back properly – my hips ache a lot more if I haven’t.  I go all the way to the ischial tuberosity in the butt cheeks.  If I have time, I do the undersides of my thighs and my calves, by propping the massage pillow up on another pillow while sitting on the couch.

For me, I feel like a lot of my issues stem from nervous innervation from my lower back – these are the areas that are most affected for me, from my gastrointestinal tract downwards.  It stands to reason, then, that heated massage to bring circulation and relaxation to my lower back would improve things.

And it really, really has.  I haven’t been using my cane as much.  I’ve been doing more, feeling better, having a clearer head, and being in less pain.  It has been amazing.

I’m now eyeballing what I can get to do the entirety of my back in one sitting, instead of having to ease the pillow down step by step (and missing bits of my back) over an hour.  I’m sure there’ll be something suitable!