Tag: chronic illness

The ants go marching one by one …

Bones

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The other day I had an interesting new symptom:  I had the sensation of ants crawling all over my skin.  Sometimes it was one ant skittering along my ribcage.  Other times it was an army traipsing down my legs, occasionally biting the skin there.

It lasted all evening, varying in intensity.  I knew it wasn’t real, knew in my brain in a way that is unshakeable, and so I waited it out.  I did not scratch the skin, that hurt.  I rubbed it occasionally, which provided some relief and did not cause pain, but I could only access some of the skin, as I was in (vaguely) polite company.

This sensation is called formication, a form of paresthesia, which is an abnormal dermal sensation with no apparent physical cause (thanks Wikipedia!).  It’s another side effect of fibromyalgia, which makes sense.  Nerves misfiring and all that.

But holy shit it was an unpleasant feeling!  The occasional biting fortunately stopped after a little while, and I had some relief about two hours into the sensation where it all settled down.  It came back but at a much reduced intensity after about thirty minutes, and eased up enough that I could sleep that night.

I haven’t experienced it before, nor since (admittedly, it’s only been a few days since, so who knows if this is a one off or a new thing?), and I hope never to.  Although if I had to pick between ants and pain … actually, I don’t know which one I’d pick!  They’re both awful!

I’ll enjoy my itching reprieve while I can.  Who knows if it’s going to come back!

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.

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.