Tag: living with fibromyalgia

Your Feelings Are Not More Important Than My Disability

Bones

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I am a people pleaser.  Always have been, probably always will be to at least some extent.  Other people’s feelings are simply more important than my own needs, and I will go out of my way to avoid doing what I think might hurt someone else’s feelings (even if it’s unlikely to actually hurt their feelings).

I also have a warped sense of what will hurt someone else’s feelings, but that’s for another time, and probably a lot of alcohol.

Regardless, I put other people’s feelings above my own needs.  And I do that now, even when my needs are great.

I use a cane to get around.  I’m fine getting around home, but if I’m walking around places like university, or the mall, I need a cane.  It hurts to take little itty bitty steps.  My happy walking is huge swinging steps where I can really stretch out my hips and swing them.  I still need a cane for that, because to do it best I need to keep my hips nice and loose, which negatively affects my balance, but I can do it for a lot longer and it’s a lot less painful.

But yeah, I need a cane to get around.  I have to be careful how I get up off chairs, sofas, and the like, because I have balance problems.  I often have to catch myself with my cane to make sure I don’t fall over.  It relieves a lot of pressure on my hips.

I’m looking into getting an Assistance Dog.  Well, a dog that I can train up to help me with my mobility issues and in the future become certified as an assistance dog when a spot becomes available to do so.  Except for one, big, problem.

My amazing human dislikes dogs.  He does not want me to get another dog.  He gets the pinchy face and says he could not cope with another dog.

Now under normal circumstances that’s understandable.  But these aren’t normal circumstances.  This is a dog that will help me with the mobility and balance issues I have now, and will help me with any fluctuations of my mobility and balance issues (i.e. what I consider to be my inevitable decline).  This is not a pet dog.  This is a working dog.  A service dog.  A dog that provides a measurable benefit to my wellbeing.

I had to say, very explicitly, that it hurt that he could not see past his own feelings to support me in something that will benefit my life and wellbeing, both now and in the future.

Now some people (like my mother) will see that as a very selfish thing, and yes, it is.  Because it’s more than just his feelings – I will also be imposing on his time, he will need to develop a solid working relationship with the dog, he will need one on one training to change his current habits, and he will need to continue to work with the dog.  I’ve suggested agility as suitable work for them both, as it involves issuing commands and having them followed while requiring no contact between the two.

Except that it’s a small imposition to him for a huge benefit to me.  I am disabled.  I will likely always be disabled.  I will likely get worse.

No one is going to stay around with me and help me get up from the sofa, or stay home and cuddle me on the couch when I’m having a flare up day.  No one is going to follow me around uni making sure I don’t fall over, or help me up the stairs.  No one is going to be there when I need help getting out of a chair, or getting up from the ground.

I have to fight to do these things.  I have to fight my own body, I have to fight gravity (damn you and your apples!), awkward chairs and even more awkward canes.

But a dog can alleviate some of that.  A dog may be able to alleviate enough of that that I have more energy to spend on other things.  There comes a point where feelings are overruled by benefit to self.

This is that point.

He’s allowed to dislike dogs.  He can continue to dislike dogs.  I am still getting an assistance dog, and he can either work through his feelings about dogs to be fully onboard and work with me and the dog, or he can go.

Because at the end of the day, my disability is more important than his feelings, and if he cannot work past his own feelings to support something that will improve my disability, then he is not right for me.

Money Matters

Bones

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I just received news that the long awaited inheritance is now not far off – and that it is likely to be more than originally anticipated.

I freaked out.  Total meltdown.  Still am.  My brain is frazzled, I’m bouncing all over the show, and not all of it is delight.  A lot of it is anxiety.

While hand combing out knotted fur and rambling (surprisingly therapeutic) I realised that my anxiety with money and the lack thereof didn’t actually begin, as I thought, with Him, my narcissistic ex, but rather in my childhood.

I grew up lower middle class in a family of five – two siblings.  We were fed, we were clothed, we had school books and that adhesive sparkly wrap to make them more interesting than just exercise books.  We had healthy lunches.

We would walk to school, rain or shine, typically a 30 minute walk at a good clip.  Mum would walk to the green grocer to pick up veggies for our lunches, and to the butcher to get meats for our sandwiches.  She tried her hand at growing vegetables, but with her severe depression when I was growing up, it was difficult.  She would trawl op shops for clothing for us.  Once in a while I would get a new top or a new pair of pants, which were always from the cheaper shops.

I hated growing because it would mean new shoes, so I would wear the same shoes until my toes were curled in and it was too painful to wear the shoes.  We would drive for 30 minutes to the cheaper shoe shop and Mum would always be fussing over the price of things.  I would always pick the cheapest pair I could walk in.

It took me years before I finally asked to get a bra, and then it was only one.  Once I grew out of that, I would only ever have two bras, and I would wear them until they broke, because I hated shopping with Mum.  We would only ever go to the cheap stores when they were having really good sales.

I understand these are all sensible things to do, but to my growing brain, it was ‘you can’t get money spent on you, we don’t have enough’.  This has been emphasised over and over again in my life by people of great import.  If it weren’t for one of my oldest friends, I wouldn’t have a healthy relationship with money or spending at all.

Compound that with the last 13 years of being in debt with no savings to speak of and barely solvent, as well as, at some stages, barely having enough money to feed myself let alone my animals (they always came first), I have no fucking clue how to be a person with financial security and it scares the shit out of me.

I was gifted with a relatively significant sum when I was with Him from a family member passing.  I paid off my debt, and he insisted on going on holiday overseas and all these expensive things that of course he couldn’t pay for and I had the money so I should pay for them.  It was gone within two months.

I know it’s not going to happen this time, for one thing, I’m not with Him, and for another thing, it’s considerably more, but the fear is still there all the same.  Any sum of money I receive disappears.  POOF!  All gone, with nought but memories and a sour taste in my mouth.  And while intellectually I know it’s not going to happen this time, there is still the overwhelming terror of it all just disappearing.

And of the unknown, this mythical financial security thing that, at 33, I have never felt like I have had.  Even the idea of it is scary.  What do I do with myself?  How to I live without the looming fear of debt, the worry over whether or not I can afford to buy cat food this week?  How do I live if not paycheck to paycheck?

This is entirely new and terrifying territory.  Because I know I am overwhelmed and can’t process this information myself, I will book an appointment with my counsellor for the extra help.  There’s a lot going on here, and this should be an amazing and exciting thing, but it’s not.

How to Survive the Festive Season with Chronic Illness

Bones

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Now that I am through the festive season, I would like to extend my best wishes to all readers – whether you be transient or regular – for the holiday season, and my heartiest congratulations for coming out the other end.

If you could hear my hysterical laughter you’d understand that ‘surviving’ is about the only thing I can lay claim to for this past holiday season.  I managed to not yell at anyone.  I did politely snap a couple of times – when mum told me not to do a thing with the laptop that had to be done (I do know what I’m doing), and when my amazing human got salty about where we had coffee because we could have had coffee at the coffee place up the road (yes we could have, but we are not, because we are having coffee here, because you said you didn’t care where three times before as we went past cafes and I shoved us all into this one because you were getting grumpy).  But overall I managed.

Which is a fucking feat of perseverance if I ever did see one.  I went into it burnt out from the impromtu therapy session with mum wherein I was the therapist and helped her unpick and reframe a narrative that has been with her since she was two.  The good news is, she’s looking a lot happier, and she’s going to start looking into a therapist.  The bad news is it took so much out of me.

Throw me straight into two very long drives back-to-back (only one of which I had to do), my amazing human’s family arriving for two weeks, and the act of ‘running interference’ to ensure my amazing human doesn’t become overwhelmed by his parents, and you have a very stressed out and exhausted lady at the end of it all.

I rarely had time to myself to plug in my headphones and listen to anything.  I didn’t have time to do any of my self soothing routines.  I was out and about constantly, pushing myself to ensure everything went as smoothly as possible.  I was mediator, decider, herder of cats, support … the works.  My role in my family has always been as mediator and keeper of the peace.  My role in my amazing human’s family is apparently the same, with making decisions (because no one else does) and herding cats on top of that.

I failed miserably at implementing any kind of self care over the holiday period.  It’s hard to say ‘no’ when you’re trying to keep everyone else happy – and that’s a holdover from my childhood.  If I keep everyone else happy, no one will be grumpy, and I won’t be grumped at.  Well it only partly worked.  I still got grumped at.

But, in my rambling way, I survived.  I made it through.  The only incident was the dog eating a part-empty tube of cat laxative and having to clean that off the carpet (she’s fine).

And next year hopefully we won’t have two families combining over the holiday period.

Goodbye 2019, Hello 2020

Bones

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Well.  What a decade this has been.

I moved country.  Twice.  With a lot of animals.  I was married.  I was separated.  I am not yet divorced, but hey that’s coming this year.  I got more animals.  I moved city to pursue the career of my dreams.  I gained a weird older brother in my flatmate.  I met some truly amazing humans through my university course.  I met one of my truest and best friends to date through fandoms.  I met, and fell in love with, my amazing human bean.

I had a breakdown.  I was diagnosed with fibromyalgia.  I built myself back up.  I was diagnosed with trigeminal neuralgia.  I built myself back up.  I got rid of more narcissists on the way.

All throughout I was supported by the most amazing, kind, generous, loving and supportive humans I could ever have been blessed with.  My parents, for whom without which I could not have even begun my journey into my new career, let alone continued on it.  My nearest and dearest friends who have shouted me road trips and meals and yarn, who have given me hugs and cuddles and lent me their ears to vent and rage and cry.  My amazing human being who has stood beside me through ironing out my quirks, my panic attacks, my depression, my medication trials, my descent into physical disability, who has cooked me nutritious meals, has made spiced hot chocolates when things get tough (“I can’t fix it, but I can make hot chocolate!”), has enthused over anything I have shown interest in …

And then there are my amazing animals, three of which I will not get another decade with, who I cherish more than I can say and who have provided me with company, love, fur, poop, barf, and so many laughs.

This decade has, without a doubt, been the toughest I have lived through yet.  The physical, emotional, and mental toll of fibromyalgia and trigeminal neuralgia can not be understated.  It is brutal and it is every damn day.  And yet I feel very fortunate.  I have learned that the people I am surrounded by have more love than I could ever have imagined, and I feel truly honoured.

I am relieved this decade has, at last, passed.  There are many things I look forward to leaving behind.  While I do not ascribe to this ‘new year, new me’ (or ‘new decade, new me’) thing, I do find it is important to identify a ‘turning point’ so to speak, a point at which you can say ‘this situation did not go past that, and it is done’.  For me, the shift from 2019 to 2020 is that, in terms of freeing myself from narcissists (both romantically, and platonically), and the start of my journey into chronic illness.

Now bring me that horizon.

The Importance Of The Outside

Bones

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I moved house three months ago.  Well, I should say, we moved house three months ago.  We moved from a small, 70s built house with a very small lawn (2x3m, with a 1.5x10m run down the side) into a large, 60s built house with retrofitted double glazing, a catio (a patio that’s fully enclosed to allow cats outside time without them being free-roaming), three lawns, multiple edged and established (but overrun and very confused) gardens, a rose bush taller than the house, and two raised garden beds fenced off down the back.  We have apples and pears, an olive tree (I still don’t get this one), so many magnolias of different colours, roses popping up out of trees, and a loquot.  We also have a fig tree stump with a lone fig stubbornly growing on it.  Oh, and a grape vine!

This garden is a mishmash of things and it is very overgrown with ivy and jasmine and weeds and I have never gardened before in my life.  The closest thing I had to a garden before now is my small collection of succulents who, despite all neglect from me, have continued to survive.

Now I have an established and overrun garden to manage.  And I never knew how much I needed it until I had it.

I grew up in a large, old, draughty villa with a 1/4 acre section and a veggie patch.  There were trees I would scale all the way up until I was too “cool” to do so (around aged 15-16, I was a slow bloomer), a cinderblock I would use to contain any fires I lit just because I could, and an overgrown section down the back end of the garden that I could hack at with my trusty home made wooden samurai sword (whittled out of a branch courtesy of one of my friends).

My holidays were spent at the beach.  We had a small, lockwood holiday home within 5 minutes walk of a quiet beach.  There was no TV, no dialup internet or world wide web (in fact, some of this took place before those days!), and mobile phones were still a pipe dream.  We had to make our own fun.

What I’m trying to express here is that I grew up in and around nature in every part of my life.  I was a hippy child, a wild child – give me some rocks and I’d scramble up them faster than you could say “that’s a big rock”, and I would try to climb every tree.  Most of the time I was even successful.

As I got older I withdrew from the outside more and more, finding solace for my teenage angst on the internet and the people there.  I had an Angelfire Page – actually I probably had about five.  I was onboard when MySpace first came out, and Live Journal.  I was on Yahoo Groups and DeviantArt.

I stopped going to the beach for the holidays.  I stopped going outside.

I moved into a tiny little cupboard of a room in an awful little apartment with only concrete and horrifically overgrown “gardens” to speak of.  Then into a house with a single tree and a lawn you couldn’t even swing a cat in.  Next up was a house with a bush back section and a small raised lawn, then apartments.  I became “modernised”.

That little wild child who lit fires in the garden and ran on the beach and screamed into the wind because it was fun just … withered.  And died.

Looking back knowing what I know now, I suspect a lot of that was to do with my fibromyalgia, the incredible stress of working full time in a highly demanding job, and the stress and anxiety of being with a narcissist.

Regardless, I neglected an important part of me, that little hippy girl, and it took moving to this house to realise it.

She’s slowly coming back, that dirt grubber, with every step I take on soil without shoes and every weed I pull out without gloves.  With every time I sit in front of the open doors to the catio and breathe in the fresh country air and admire the green that creeps everywhere.

She is slowly coming back, and with her, I become more grounded.  More robust and at peace with my life.

The importance of the outside is, to me, immeasurable.