Tag: rest

Fatigue and Lethargy

Bones

jordan-whitt-EerxztHCjM8-unsplash

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.

Accepting Limitations

Bones

clint-mckoy-569175-unsplash

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.

PTSD Flashbacks

Bones

art-background-beverage-414720

Today I had a PTSD flashback.  It was the worst PTSD flashback probably since the instance in the hotel lobby.

I smelled cinnamon and nutmeg.  It’s Christmas time, so someone was probably feeling particularly festive.  Or maybe the cafe downstairs was making a lot of things involving cinnamon and nutmeg.  I love cinnamon and nutmeg, I love the smell, I love how festive it feels.

It’s also the smell of chai lattes, as a colleague commented.  And that was the trigger.

My gut dropped and I went numb, my mind had a few seconds of racing then just disconnected.  I kept my breathing even and my face blank – I was at work, no one could know what was going on (this is part of my self preservation mechanism).  I messaged a friend to get it out and then kept on working while everything inside of me screamed.

Fortunately an urgent piece of work came up which allowed me to scoot my wheely chair across the room and then back to my desk, and with (very forced) cheerfulness, I continued with my day.

I’m still shaken.  All through the rest of the afternoon I was shaken and very very carefully maintaining my facade of general competence and cheeriness.  I probably will be for a while.  I had a few things to do this evening and I made the executive decision to ask someone else to cover me (as I cover for her when she needs it) so now I can spend some time properly relaxing.

When a big shock like this happens, it’s very important to implement greater than normal self care measures.  So that’s what I’m doing.

The Reality of Fibromyalgia

Bones

blur-clean-clear-268854

I’ve had a fairly packed few weeks, and I’m looking at a full schedule until … probably mid February.  My anxiety is considerably higher than normal, as there’s a lot to get done over the next few weeks.  I’m physically doing considerably more and resting less.  This has a lot of consequences for me.

First being that my fibro is flaring up.  Which, yeah, go figure.  It means random parts of my body hurt.  On Friday, the middle knuckle on my right hand hurt.  Yesterday, an old injury on my left foot started hurting (and still does).  Bits of my leg hurt, and then stop hurting at random.  My knees ache more, my right elbow started hurting … you get the picture.

Today I experienced a new symptom.  I had a shower, which was all well and good.  I was drying myself off when I felt pain running down my left arm.  I quickly turned my arm over.  It was a water droplet running down my arm.

I felt some not inconsiderable pain from a water droplet.

I briefly panicked and then bottled it up.  I didn’t have the time to panic about it, so I didn’t.  It’s only now, in the later hours, that I’m sitting down to process this new facet.

Pain from a water droplet.

I’m used to abnormal pain after an injury, or additional pain after physical exertion, but this is new.  This is normal sensory input being processed as pain.  This is something I cannot excuse away as ‘a bit rough’ or ‘a bit sharp’, it’s a water droplet.

Realistically I’ve experienced this before.  Sometimes when my amazing human rubs my head or my arm, it hurts.  I’ve had days where pillows hurt to lie on.  But I have always rationalised them away – my amazing human was being unintentionally rough, or his nails were too long, and I just had a really bad headache so I was sensitive.

This is the first experience I can’t rationalise away.  This is clear proof that I have an issue with sensory input, where either my nerves are sending the wrong signals, or my brain is interpreting the signals wrong.

Today it really hit me.  I’m still not sure what to do with this information.  I’m probably going to bury it for a while and bring it out to examine at inopportune times (such as during an exam, or when I’m trying to read).  But for now, honestly?  I’m scared.  This is scary.  And I really don’t like it.

The Aches And Shakes

Bones

adorable-animal-animal-world-209037

The last few weeks have been interesting to say the least.

I appear to have developed an essential tremor in all of its forms – internal, kinetic, and postural.  I am in fact off work today with the aches and shakes!

It seems to mostly appear when I have ‘done too much’ – typically beginning lightly on Thursday and coming in a bit more solidly on Friday, and then slowly receding over a weekend of rest.  This weekend just past wasn’t particularly restful, so I was shaking myself to pieces yesterday at work.

This morning I had the ‘roaming aches’, where one joint would feel incredibly painful, then that would go away, and another would start feeling incredibly painful.  On top of that, I have my usual overly exhausted body aches in my hips, lower back, all down my legs, and around my shoulders and neck.  Fortunately I’ve got my physio appointment today, so that should ameliorate at least some of those aches.

So I’m not entirely sure if the shakes relate directly to the fibro, or more to the amitriptyline, as postural tremors are associated with both.  Although I notice mine most as a kinetic tremor, I lose my fine motor skills, and simple tasks like leafing through paper or putting a paperclip on are surprisingly challenging.

I’ll raise this with my doctor on Thursday, who will hopefully have all the blood results back by then, and I can get a properly tentative answer as to what this all is.  In the meantime, it’s nap time.