Fatigue and Lethargy

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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.

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!

A Big “Fuck You” Kind Of Day

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It’s a beautiful day.

The sun is shining, the breeze keeps it cool enough to wear pants, all the animals are curled up and snoozing, and I have a large break from university.

I just want to scream at the world and hit inanimate objects and swear at the sky and flip off the butterflies.

They’ve done nothing to offend me, I’m just having a big “fuck you” kind of day.

It’s one of those days where I feel itchy inside my own skin, as though it’s wrong.  It’s one of those days where my elbow aches and my stomach won’t unclench and I have a permanent unimpressed bitchface going on.

I’ve done some woosah.  I’ve listened to my relaxing music and done my best to let it sweep me away.  I’ve done some stretches to ease my sore muscles.  I’ve stretched my back.  My last port of call is going to be a few minutes out in the sun.

Even though I’m doing all of these things, and they’re not quite working enough, I’m not fighting the feeling of almost manic anxiety and frustration.  Not fighting it takes conscious thought and effort, because we naturally want to push away the bad feelings and not feel them.  Unfortunately, that makes the bad feelings worse, because fighting them is also a negative feeling.

So when I’m having one of these days and I notice myself getting pent up trying to fight off the bad feelings, I take a big deep breath and relax my stomach as I exhale.  I take another deep breath and relax my stomach further, then work on my shoulders, my neck, and lastly my face.  I make ridiculous faces as I stretch out my muscles from their scrowl and reset my eyebrows, the muscles around my eyes (which always pinch when I’m stressed), my mouth and my chin.

And I just do this every time I notice I get pent up, which is every few minutes.

It’s interesting how much of an impact your facial features have on your mentality.  Or the way your body is, how clenched your stomach is, how tight your hips are.

Mental state is tied intrinsically with body state.  They influence one another, and a change in one produces a change in the other.  So it stands to reason that in order to relax the mind, one must also relax the body.

There are many methods of relaxing the body.  I find using music helps, as it gives me an external thing to focus on while I work my way through my muscle groups.  I also find lying in the sun helps, as the sun warms tight muscles and helps them relax.

It’s difficult to not go boneless like a cat in the sun!

 

Photo by W A T A R I on Unsplash

Addition of Citicoline

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I have spent the last year playing with supplements.  The primary supplements I aim for is appreciable levels of Vitamin D, a good B blend, and Magnesium.  I don’t get a lot of vitamin D in my everyday life, so supplementing it helps me stave off seasonal depression.  A vitamin B blend helps to manage my stress levels.  Magnesium helps to keep me relaxed and sleep better.

Last week I went into a new pharmacy with a friend to pick up some more B vitamins, as I’d run out.  Said friend saw a thing about brain improvement, and impulsively, we split the cost and bought it.  It was citicoline 250mg.

Since taking citicoline, the fibro fog has lifted, I am more alert, my recall is superior (even for language things, which I’ve always found difficult).  It has improved my overall mental alertness throughout the day.  Waking up is still a pain to do, but once I’m up and moving, staying up and moving is easier.

It hasn’t assisted with the fibromyalgia pain at all, but that’s okay.  It’s moved a huge amount of mental fog and really helped with my ability to function.

At the moment I’m only on 250gm every morning.  I’ve ordered a larger pack (30 capsules was $40 at the pharmacy, but $40 for 150 capsules from a reputable online store), and once that’s here I’ll increase it to 500gm.  I’m really interested to see how doubling the dose affects my alertness – you can go up to 2,000mg without concern of toxicity.  I probably won’t go quite that high, but I’m definitely going to play around with it.