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.

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The Language(s) of Love

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I have had the pleasure of my amazing human for nearly two years now.

During this time our communication has morphed from what we thought it should be to a proper reflection of who we are as people.  We both have aspergers.  We both have had challenging interpersonal relationships because of this.  We both have subconscious ‘normal filters’ and a culture influenced view of how relationships should be.

Earlier on he would say “I love you too” when I told him I loved him.  Now he makes happy noises and rocks, which is his way of saying “I love you too”.  It means exactly the same thing, but this is how he communicates best.

Now those happy noises and rocking can mean anything from ‘this is exciting’ to ‘I love you’, but they’re always positive feelings.  It just depends on the context.

This used to bug me a bit – not the noises or the obvious sentiment behind them, but the fact that he wouldn’t say the words “I love you too”, because I like words.  It’s not that I don’t understand what he’s communicating, but rather that I want the words, because I’m used to words, and I use words.

These days I’m a lot more relaxed.  I don’t need the words.  I like words, but I don’t need them.  One day I might, and I will tell him then that I need the words at that time.  But right now, I see more love in his smile and in his eyes than words could convey, and his happy noises bring me joy.

Never Go To Bed Angry

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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!

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