Chronic pain · Fibromyalgia · Invisible illness

You are not alone

Community

You may have heard, I write a little blog.  I’m not being cute when I say little, I’m being honest. My blog gets a little traffic. I know this because every time I log in to write a post, I see my daily stats. So, last week I logged in as usual and, hang on a minute, there must be something wrong.  A quick investigation and stats don’t lie. On one day, I had over 1,300 views of one post!  It seems another Facebook page had shared my post on socialising with chronic pain and it was getting some traffic.

As it so happened, on that very same day I noticed a post I had written about fibro funk (which had been republished by The Mighty) had been shared over 3,700 times!

Now I’m not telling you this to big note myself. (Although, if someone else wants to tell me how cool it is, I’d be totally fine with that.)  The reason I’m mentioning this is because it is so easy to feel alone. When I first became sick I felt completely alone.  I was staying with my parents and was so lucky to have countless family and friends around to help, but I still felt very alone.  I wasn’t like everyone else any more, this time I was really sick.  My body was shutting down on me and the drugs I was taking to try and combat this were causing my brain to give in as well (or so it felt).  When I was finally diagnosed, nobody I knew had ever heard of fibromyalgia (myself included), so how were they really going to help me, in my soul?

I soon became educated on my condition as did those around me.  I enlisted the help of a team of great medical professionals, and found a supportive online community of those fighting the same or similar condition.  After a while, I wasn’t so alone anymore.  But, don’t be fooled, it is so easy to fall back into the feeling of ‘I’m all alone’.  One bad flare and the alone feeling can hit you like a tonne of bricks.  Right out of nowhere.

At times like this, when I can’t get out and see my friends, when I don’t have the energy to connect with people online, it’s important to remind myself that I’m not the only.  And I know this because there are a hell of a lot of people out there reading about and sharing my thoughts and (much as I’d like to take credit for my amazing writing skills) I know it’s because these people connect with what I’m saying, because they are/have been there themselves.

You are not alone.

Chronic pain · Fibromyalgia

Pacing. Mindfulness. Just Slow Down

 

When I first started this blog, I was writing pretty consistently.  My pain specialist had reintroduced me to writing and I discovered how healing it can be.  It also helped that I was working part-time and freshly practicing skills like pacing, mindfulness, and self care.  Modest as I am, I considered myself a model patient.

The following year, things got a little messier.  I moved cities, started a new job, had a baby, and started a new business.  What should by now have been ingrained, automatic practices – pacing, mindfulness, self care – fell so far by the wayside that when I heard someone talk about pacing, I actually thought “Oh yeah, pacing.  I remember pacing.  I’m supposed to be doing that”.  Not such much the model patient any more.

Now here we are, 2017.  New year, new me?  Let’s take a peak into my drafts folders.  So many part written posts.  So many titles of posts that I leave there under the deluded belief that I will one day find time to write down the million thoughts running through my mind.  Because, let’s face it, that’s what I’m missing here.  Time.

As anyone with a chronic condition can tell you.  Time is no longer your friend.  How can I find the time to take care of myself around an otherwise full daily schedule?  Or, more accurately, how can I find the time to fit in a full daily schedule around taking care of myself?

As any parent can tell you.  Time is no longer your friend.  How can I find the time to take care of another human being, around an otherwise full daily schedule?  Put the two lives together – chronic and parent – and you have one doozy of a time problem on your hands.

Some days (most days), my 7 month old daughter will sleep only in 20 minute intervals, intervals that are few and far between.  Some days (most days), I feel like I’m living my own personal Groundhog Day.  Clean bottles, sterilise bottles, fill bottles, feed baby, play with baby, attempt to get baby to sleep…  While my body automatically works through each step, my mind races with everything I need to get done that day, that week, everything I feel guilty about doing, everything I feel guilty about not doing, everything I don’t have the time to do.

I swear, at any moment my head will explode.   All of the thoughts swirling around in there are fighting, pushing desperately to make their way to the front of the queue.  Now they’re wearing boxing gloves, knocking down each idea, reminder, chore, question, and list (oh, the endless lists!) who dare jump in front of them.

Today however, something silenced the otherwise obtrusive thoughts.  As my daughter woke from her very short nap demanding a bottle, I looked at her, stopped and turned down the volume.  Not too long ago I didn’t think I would ever have children.  While being a mother was something I always knew I wanted, with my health the way it was, it did not realistically look like I would be able to manage pregnancy let alone motherhood.

Now here I am, looking into the cot at my beautiful, healthy, happy 7 month old baby.  And it clicks, I need to stop.  Call it pacing, call it mindfulness, call it whatever you need to for it to make sense to you.  For me,  it simply became clear that I cannot do everything at once anymore.  I cannot do everything in one day anymore.  I don’t need to do everything at once or even in one day.  What I need to do is live in the moment.  Be thankful for my life, as it is.  Not how it once was.  Not how I would like it to be.  Just how it is.  Right now.  Because right now is good.

(PS Yes, my legs hurt, my back hurts, my wrist is playing up again, I’ve got a headache, my jaw is aching, I’m tired beyond tired.  But right now, right now I’m staring at my beautiful, healthy, happy 7 month old baby.  Right now is good.  Right now is great.)

Chronic pain · Fibromyalgia

I am done fighting

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This pup is made for walking and so am I!

I started writing this post in January when New Years resolutions were all the rage.  Remember them?  I’ve only made one New Years resolution before and that was about 8 years ago.  I could say I am against the arbitrary nature of making grand declarations of change simply because the calendar flips to January 1 but, let’s be honest, that has nothing to do with it. The truth is, I have absolutely no faith in my ability to hold myself to any such declaration and don’t need to have my nose rubbed in my failure by those holier than thous who are still on the path to a happier, healthier life by January 2.

Now, having said that, a little time away at the beginning of January did get me thinking and I came to a decision.  Dun, dun, dun…. I am done fighting my body.

That’s it.  It might sound odd to a healthy person but, to me, it makes complete sense.  I am done fighting my body.  This means I will no longer fight my body to do the things it cannot, such as continuing to move/work/interact past its tolerance level, staying awake when it needs to rest, eating foods it clearly does not like…

A whole lot of ‘no longers’ comes with this new philosophy, but so do a lot of ‘I wills’.

I WILL give my body the regular exercise it needs even (especially) when this is hard to do.

I WILL fuel my body with the healthy foods it craves (but I will not beat myself up for the occasional indulgence*).

I WILL take my medications at the correct time each day.

I WILL regularly give my body and mind time to rest and recharge.

I WILL thank my body for everything it can do.

I WILL encourage my body to go further, to become stronger, to defy expectations.

I WILL put my body first.

_ _ _ _ _ _ _ _ _ _ _ _ _

* Very important side note: I refuse to define ‘occasional indulgence’ as this changes on a day to day, needs-based basis.  Today a few squares of chocolate might be enough to satisfy the sweet tooth.  Tomorrow, an entire block of Cadbury’s Marvelous Creations might be required to get me through a bad flare.  Who knows?  Basically, if I fall off the wagon, it’s okay, it doesn’t matter.  What matters is that I get back up.

While this post is in no way sponsored by Cadbury’s Marvelous CreationsI am more than happy for any and all of my posts to be.  I’m looking at you Cadbury, get in touch (wink, wink).

Chronic pain · Invisible illness

The forgotten ones

I cried watching this.  I cried for Jennifer.  For everything she has been through and everything she continues to deal with.

I cried for myself.  For all the times I was dismissed by doctors.  For all the times I heard the words “There is definitely something wrong with you, but it doesn’t have anything to do with [insert next random medical speciality here]”.  For all the times my mother was asked to leave a doctor’s surgery so they could ensure I had not failed to disclose some deep psychological trauma due to her presence.

I cried for all the times I reached out to the medical profession only to be turned away.

I also cried for all of those who have yet to find help.

I am one of the lucky ones.  Eventually, I found doctors who listened, who said they wouldn’t give up.  I found doctors who took the time to find out what was wrong with me and what they could do to help.

I should not have to call myself lucky.  Finding doctors like this, who listen, who investigate, who don’t give up.  This should be the norm.

Chronic pain · Fibromyalgia

Explaining away my limitations

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Would it have helped if I looked like this?

Last week I went to buy a carton of beer for my fiance.  Knowing I wouldn’t be able to carry the carton myself, I picked up a trolley from the supermarket next to the bottle shop as I’ve done many times before.  Unfortunately, being Christmas Eve, the shop was pretty busy and had therefore instituted a ‘no trolleys’ policy.

Not wanting to make a fuss, I parked my trolley aside the others outside the shop door and ventured inside. I picked up two bottles of champagne (I did have two free hands after all) and headed to the register.

“I would like to buy a carton of Summers” I told the lady behind the counter, “but I can’t carry the box.”

“Okay” she replied casually turning to her co-worker. “Dave*, this lady wants to buy a carton of Summers but can’t carry it. Can you grab it for her when you get a chance.”

As the lovely lady turned back to ring up the sale and ask about my holidays, I received the eyeballing of a lifetime from Dave. “Okayyyyyyyyyy”, he replied while looking me up and down with the quizzical why-can’t-you-do-this-yourself look.

My immediate reaction was to explain myself, to make Dave feel less uncomfortable about helping me. “I’ve recently had a c-section”, I considered saying.  Everyone knows you can’t lift anything heavy after a c-section.  Everyone will be more comfortable if I just say I’ve had a c-section.  It’s not like it’s a total lie.  I did have one, 6 months ago.

As the c-section remarks raced through my head, another thought charged in and shoved them out of the way.  I don’t actually have to explain myself.  I can’t carry the box, that’s it.  This bloke doesn’t even have to go out of his way to help me, it’s his job.

And so, rather than revert to my usual behaviour of making excuses, justifying why I need help, or lying because it’s easier than explaining the truth, I turned to the lady at the counter and told her my Christmas Day plans.

As we finished our chat, Dave walked over and told me he had placed my carton into the waiting trolley outside.  Again making sure to give me a long once over, looking for any visible sign of my inability to do what he obviously  believed to be an easy task.

Not my responsibility, I thought as I left the shop.  It’s not my job to make you feel more comfortable about my limitations.  It’s not my job to explain why I have limitations.  The only responsibility I have is to myself to ensure I know what my limitations are and that I adhere to them.

_ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _

*NB Name has been changed due to my awful memory.  I have nothing against Daves, it’s simply the first name that popped into my head.

Chronic pain · Fibromyalgia

Review: Organic Aromas Essential Oil Diffuser

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I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.

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Don’t forget!

During my last visit to my pain specialist, he wrote down 3 things he thought it was vital I continue with in the coming year.  As someone whose mind never turns off, number 2 on the list – meditation – is the thing I find the hardest.

Meditation.  Relaxation.  Peacefulness.  Whatever you want to call it.  Letting go of the days events, ignoring the niggling thoughts about everything that needs to be done, releasing tension.  It’s not easy.

So when I was offered the chance to try an Organic Aromas Essential Oil Diffuser at home, I jumped at it.  Although I had never used an oil diffuser before, I recently noticed one in the treatment room at my massage theraprists.  The fragence coming from the diffuser helped set the mood perfectly and made it easy for me to relax into the massage and forget about everything else that, quite frankly, could wait.

Oil diffusers are designed to break down and disperse into the air the therapeutic properties of the oil.  Essential oils (extracted from plants) have been used for thousands of years to treat a variety of issues.  A cousin of mine swears by lavendar on her pillow to help her sleep and I know of countless people who use peppermint for headaches and nausea.  According to their website, Organic Aromas Essential Oil Diffusers are nebulising diffusers meaning they don’t use heat or water.  The essential oil therefore doesn’t become diluted and its chemical structure remains unaltered.  This means the oils reach you “in their natural state and provide you with all of their original therapeutic benefits.”

Organic Aromas have a range of beautiful diffusers starting from US$95 to US$175.  At the moment (October 2016), that’s about $125 to $230 Australian Dollars.  Not cheap.  So, is it worth it?

I chose the Raindrop diffuser in light wood (US$95), based on nothing more than its simple, elegant shape.  You can buy essential oils from the Organic Aromas website (US$7.50 – US$24.92) but each diffuser comes with a 5ml sample bottle so you can start using it straight away.  I was lucky enough to be provided with 2 oils to try, Passion and Serenity.  Bearing in mind the diffuser arrived 2 months after my daughter was born, Passion was the last thing on my mind!   Serenity however – reduced stress/anxiety and promoted relaxation – was exactly what I was looking for!

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So, that evening I set about making the most of the Serenity oil and, in the name of blogging experiments, ran myself a bath (added bubbles),  lit a candle, turned on the diffuser, and turned off the light.

Having never used a diffuser before, I was happy with how easy the instructions were to follow and how simple the diffuser was to put together.  There are literally 5 steps and 2 of those are plug the diffuser into a power socket (an international adapter is included) and turn it on.

The Serenity oil is a combination of cedarwood, ylang ylang, lime and lavendar which according to Organic Aromas can help not only with sedation and anxiety but also with inflammation and pain.img_8137

As a newby to the use of essential oils it quickly became apparent that I used far too much as the fragrance made its way throughout our entire house. Oh well, we live and learn!

I also turned the “volume control” up too high (at about half way) which made the diffuser louder than it needed to be.  The volume control is used to control the amount of oil that is diffused.  On my second attempt, which naturally required another bubble bath, I used only about half a dozen drops of oil and turned the volume control about a quarter of the way.  This gave me the beautiful fragrance of the oil without being overpowering and meant the diffuser was much quieter.

The diffuser works on 2 minutes on, 1 minute off cycle and automatically turns off after 2 hours.  There is also a small LED light that slowly works through the raindow of colours.

All in all, I am very happy with my Raindrop Essential Oil Diffuser.  I can’t say with certainty that it was the use of the Serenity oil alone that helped me relax but I do believe it helps when combined with other relaxation/meditation techniques.  I can also say that a good night sleep has followed each time I have used it.

Sidenote:  No, the diffuser doesn’t have to be kept to the bathroom.  I know some people use diffusers daily throughout their home.  For me, however, I like the fact that the diffuser isn’t an everyday item and instead is something I keep for those times I specifically set aside to wind down.

Shipping Win!  I’m always wary about estimated shipping delivery times when ordering from an overseas company.  The Organic Aromas website says 8 to 11 business days for regular registered airmail and, much to my surprise, the diffuser arrived 10 buiness days later.  Nice.

Chronic pain · Fibromyalgia

Waking up with Fibromyalgia

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Waking up with fibro.  Coffee not included

I have lost count of the number of people who have asked me what it feels like to have fibromyalgia.  It seems like a reasonable enough question, yet it is one I struggle to answer.  I try to explain away my fumbling for words by talking about glasses.

When I first started univeristy, many many years ago, I assumed the PowerPoint slides used by my lecturers were slightly blury because they were being projected onto a big screen.  It wasn’t until I started wearing glasses that I realised the slides were actually crystal clear, however my eyes saw them differently.

So, what do glasses have to do with fibro?  Well, it’s not until someone puts glasses on that they realise the way things should be and can then explain how they see things compared to the norm.  As someone who has lived with chronic pain for over 20 years, I find it difficult to explain what it feels like because I don’t know what it feels like not to be in pain.

This morning however, I took note of what my body was doing from the moment I woke.  What follows is a recount of an average morning with fibro, for me.

A nose outside wakes me.  I lay in bed with my eyes closed.  Do I really have to wake up? 

I try to open my eyes, my eyelids are heavy.  Weighed down.  Trying to open them is like fighting against the tide.  Fatigue pushes them down as I gather the strength to pry them apart.

Eyes half open, my head is already turned towards my nightstand.  I can see my phone.  I celebrate the small victory.  I lift my arm and move it towards my phone.  My shoulder aches.  My arm is heavy.  Just like my eyelids, it feels as though an outside force is trying to keep my arm down as I will it closer to my phone.  I reach the phone and position my hand.  My fingers are stiff.  Like a joint that has just been taken out of a plaster cast, my fingers feel like they haven’t being used in months.  I unfold them slowly and pick up the phone.

I turn the phone towards my face and wince as a sharp pain strikes my turning wrist.  It’s 8.30am.  I went to sleep around 7.30pm last night.  13 hours sleep.  It feels as though I just lay down.

Beyond my bedroom door, I hear my beautiful baby talking to my fiance.  I smile to myself.  As the corners of my mouth turn upwards, I feel a pulling underneath my ears and an ache in my jaw.  It’s now that I notice the tightness of my splint against my teeth and the throbbing of my forehead.

I peel back the blankets and sit on the edge of the bed.  My body slumps into position.  I stay still for a moment before sitting up straight to stretch out my back.  My shoulder blades crack, the sides of my neck pull tight, my back shouts in anger.  As I carefully place my feet on the ground and attempt to stand tall, my lower back fights all movement.  My wrists screech at having to bear the weight of my body as I rise.   Taking note from my fingers, my toes can’t remember the last time they were used and stiffly unfold onto the floor.  My ankles and knees let out a piercing cry as they try their best not to collapse underneath me.

I reach the bathroom vanity and grab my toothbrush out of the toiletry bag which is still packed after a few nights away.  The thought crosses my mind to place the bag on the floor, out of the way of the sink.  As quickly as the thought comes however, I realise that doing so would mean having to bend over to pick it up later in the day.  A small inconvenience now far outweighs the pain that would await.  The bag stays.

As I raise my right arm to brush my teeth, my shoulder tightens.  My forearm aches and my wrist twinges.  As I move the brush back and forth my right hand again reminds me of the need to invest in an electric toothbrush.  I can’t keep doing this.  I can’t keep brushing my teeth.  The entire arm aches.  It feels awkward.  Am I doing it right?  Is this a natural movement?

I bend over to rinse out my mouth.

I look in the mirror.

Good morning.