Tag: chronic fatigue

Getting Outside Is Good For The Soul

Bones

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I have spent the day at a country manor, helping out with some very (very) basic farm things, such as finding the pigs and getting them back into their pen, and bringing the older cows in for drenching.

I even drove the two aside farm vehicle thing.  That was awesome.

Even through the drizzle and the cold, there was constant bird song.  The hills rolled on and on until they met the mountains.  You could see the valley wherein a dairy farm nestled.  And it was beautiful and so restful.

This morning I sat on the front deck while my dog zoomed around the landscaped front yard and I cried.  It wasn’t a sad cry, but rather that cry you get when you unclench and let everything you’ve held dissipate.  It took me some time to finish.  When I did, I felt renewed, and my chest felt light.

It just reminded me that I need to get out into farmland more often.  Not into bush – while I like it, it’s not where I feel most relaxed, but rather into the rolling green hills akin to England’s own.  Into lifestyle blocks and retiree blocks where there aren’t many animals, and they just need a bit of mustering because they’re so used to their humans and will follow them anywhere.

While I know it is only a transient feeling, I feel more settled than I have in a long time.

I Have Bilateral Trigeminal Neuralgia

Bones

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In my right jaw, at all times, I have deep burning ache of bone being eaten away.  It isn’t, but that’s what it feels like.  I have an ache along my brow ridge.  The area around my temples incredibly sensitive, and makes putting on my glasses hazardous.

Sometimes it feels like a tooth is being pulled with limited analgesia.  On bad days, my zygomatic arch burns.  Sometimes the side of my nose gets a sharp stab.

Now on my left I have occasional flare ups of sharper pain coursing down my jawline and along my zygomatic ridge.

I am currently on 600mg pregabalin (300mg twice daily) and 600mg tegretol (200mg three times daily).  I’m maxed out on pregabalin, and only half way to max on tegretol, but I do not tolerate tegretol well and cannot go any higher.

Sitting around not making any faces or talking, the pain is tiring but manageable.  Talking causes pain.  Some eating causes pain.  Smiling and laughing causes pain.

It’s exhausting.  Explaining it again and again (often to the same people!!) is exhausting.  Being in pain is exhausting.  It’s never ending.

But the worst of it is the medication (tegretol) for treatment of the trigeminal neuralgia cause additional fatigue and aches!  Just what I need with fibromyalgia.

Well, I’ve gotten my referral to the neurologist, and we’re getting an MRI done (likely private, given how long it’s taking for my referral to be triaged!!), and then we’ll see what we can operate on.  Here’s hoping the public system doesn’t make me wait.

I Don’t Want Your Pity

Bones

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I’m back at university, which means interacting with other people, group work, class-wide work, and all that jaz.  This of course means explaining to a new group of people that my medications can make it difficult for me to talk at times – I’ll forget words, stumble over others, supplement one word for another without noticing at the time (I usually notice a few seconds later that I’ve done it), and the like.

And now explaining why I have to look like a robot and have no facial expression because I have trigeminal neuralgia throughout all three trigeminal branches – optic, maxillary and mandibulary branches.

Why I’m only coming to compulsory lectures / tutorials / practicals for a little while.

I am in an amazing group for my group work.  I am in a group that love each other dearly, who are open and inclusive, and who are genuine rays of sunshine.  I know their looks and their consideration come from a place of genuine care, but I don’t want it.

I don’t want it because it means they hear what I’m saying, and they think that’s awful, and I can’t allow myself to think that, because if I do I will break.  Because this is my normal, this is my life, it can’t be awful, and I can’t think that it is.  I can’t let myself think that my life is awful.

Because once I go down that road I meet nothing but expansive depression, and I don’t have the time for that shit.  I have a degree to smash.

I also don’t want the pity from my friends.  Or suggestions that I should take a semester off.  Not when I’m actually doing better, not when I’m improving day by day, not when they don’t see that because they don’t interact with me day by day.  While I appreciate it’s from a place of concern, I also found it rude and overbearing.

Except I also feel guilty for finding it rude and overbearing.  I feel guilty for asking her not to mention it again, for asking her to trust me when I say I’ve got this.

Managing disability surrounded by able bodied people is a challenge.  Dealing with their perceptions, their opinions, and their ignorance is, at times, completely beyond me.

So instead I whinge about it in a blog.  Hey, it gets it out there, and it makes me feel better, and hopefully someone else will read this and know they are not alone in what they are feeling or what they are struggling with.

I don’t know the answer to these challenges, I just know that I have to work through these feelings to understand what it is I don’t like and come out the other side.

Fatigue and Lethargy

Bones

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So as you probably all know by now (or, if you’re a transient blog surfer, you may not know – and also, hi!) I have fibromyalgia.  I am also being treated for trigeminal neuralgia.  Jury’s out on what’s causing that, I’ve got a referral so let’s see where that takes us.

Fibromyalgia unfortunately involves chronic fatigue.  Fatigue is defined as “extreme tiredness resulting from mental or physical exertion or illness” (thanks google dictionary), but for some reason I find that word too … lively.  It’s the ‘t’ and the shortness of the word.

I actually prefer the word lethargic, and it’s defined as “a lack of energy and enthusiasm”.  While it’s an accurate description, I do indeed have a lack of energy, it doesn’t take into account the severity of that lack.  But, still, I like that word, because you can elongate the ‘e’ and the ‘a’ and it becomes a long, slow, exhausted exhale of a word, bringing to mind a sloth on a branch moving in that incredibly slow way of theirs.  It sounds how I feel, although fatigue describes it.

I was going to do things today.  I got up, I had my cuppa coffee, I took my meds (I’ve doubled my morning tegretol, as the pain from my trigeminal nerve is increasing), and I had my brekkie.  I lay around for a bit, read a bit, and then realised I was having difficulty focusing on the words.  My eyelids drooped, so I sat up and started sorting out a mindless but fun computer game to play (shield bashy bashy, sword smashy smashy).  I was just starting up when everything slowed down.  My arms weighed down with lead, my shoulders dropped, and the fatigue hit me in the face like a two handed hammer.  Oof.  It’s hard work just typing this.

I’d been improving so much with my fibromyalgia and my balancing act that I haven’t felt like this in a wee while.  Anxious and depressed and like I don’t want to do anything, sure, but not this whole body-weight drained fatigue.  I actually suspect it’s a side effect of the tegretol – I’ve found myself less able to do things lately.  Or it could be the pain from the trigeminal neuralgia fatiguing me in a shorter length of time to what I’m used to.

Regardless, I’m now going to put my feet up, put something on Netflix, and doze for the rest of the day.  When the fatigue hits, you just gotta rest.

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.