Tag: health

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.

Accepting Limitations

Bones

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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.

Never Go To Bed Angry

Bones

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“Never go to bed angry” is one of the earlier pieces of advice I heard, or read, or somehow acquired.  Who knows where from, or what it was for, or why, but it’s advice I have occasionally worked quite hard to follow.

Tonight is an excellent example.  Tonight I am feeling very put upon and sorry for myself – to be honest, I have been for most of the week, because this week has been awful, and I feel like I’ve been dumped on by people who should be trying to relieve my burdens, and by people who I felt should have recognised that.

I have been sick.  Not sniffles sick, but full on fever, vomiting, delirium, the works.  This will be the fifth day.  I still have a fever.

On top of that we’ve had no power to our hot water cylinder, which I’ve been tasked with finding a resolution for (long story, no one wants it to be their fault, I JUST WANT HOT WATER).

The dog had a really bad hotspot and needed to be seen by the vet.  That same night my friend’s dearly beloved cat and companion took a very sudden turn for the worse, and when I met her in the emergency clinic, it was decided that she would not be returning home with us.

I had a nurse’s appointment, then a doctor’s appointment.  An exam.  Still no hot water.

My lovely human (who I will gently address this with) said with a stern voice “we have to do something about this food in the fridge, it’s all going to go off!  We’re going to have to give it away!”  Except his tone of voice meant that I was the one who would have to do this, along with everything else.  “I can smell the dog, you’ll have to clean the cushions after this,” while I’m lying on the couch, unable to keep more than toast and honey down or stay conscious for much longer than an hour.

I am exhausted.  Tonight I mistook the dog’s medication for the cat’s medication, so off we went to the after hours vet clinic to have vomiting induced (which didn’t happen … until we got home!).  I even had a little cry in the waiting room while everything just hit me.

So I’m feeling very sad and put upon.  And not without reason, either, it’s been a catastrophically shit week and it just doesn’t seem to want to end.  It’s taking a lot of effort not to mope and sulk and be petty.  It’s when I feel like this that I know I’m at nope point and I need to take some time to relax.

A bit of music goes a long way, so while I’m waiting for my cat to be a bit more conscious, I’m chilling.  Then I will sleep!