Spoon theory.. how DO I actually get through a day??

I don’t know whether I’ve mentioned this before, but have a look at this:

spoon theory

It’s great, isn’t it?

Almost everyone I know who has a chronic condition says this is the best explanation to help people understand the nature of daily existence for us.

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Ok, so I have 15 spoons on this given chart.
*get up  1
*shower 2
*IBS stuff   3 (I made this one up based on how much energy managing this takes)
*get dressed 1
*bus   2 (to and from work, some days this is more)
*work    4 (and some days many more stairs than a normal person does)
*manage meds    2
*after work phone calls    3
*dinner    3 (not every day though)

I am, on an average day, on a three spoon defecit even if I dont make dinner.

You may have noticed the list doesn’t include any kind of shopping or going out.  Those events take a special kind of spoon stash.
And chiropractic treatment, well, cancel my evening. Nothing more happens.

It is a constant balancing act of what must be done vs. What I want to do.

And this is where it all goes interesting.

I am so far into a spoon defecit that literally anything I do is sending me into a flare.  I am working my arse off just to get to the ‘must’ things. I have to work. I like money (one of those useful things that make stuff like bills and food happen) and have been refused any help from the lovely government, so really have got to got to work.
But then working this hard kills spoons dead. Argh. Vicious circle. Very vicious.

This year has been so extra special too. Having the stupid tumour and half lung out, well, just throw away all the spoons and replace with one knife and stab yourself in the fucking head with it.

Extra meds. Extra awkward. Extra pain.

*sigh*

Anyway….. (Yeah, I’m sick of hearing about the poxy lung thing too. So old news)

Positivity. That’s what you need. In fucking buckets.

You can get through things. It’s not easy, but then again nothing is easy that is worth it.

There are moments where I have hardly any energy, but I will try to use that last ounce to keep my chin up.
I may be going through so much stuff myself, but I will try to keep my ears open to listen to others when they need to get things off their chest.
I may be dog weary but I keep trying.

This will cost me spoons, I know, but I am not giving up. I can’t.

I am only 37, I have so much life left in me. I can’t just jack it all in now.

Some things just take a little more working out.

A lack of resentment helps, resentment and negative emotions will steal away your energy quicker than anything. And that is quite hard. You want to rage. To shout how unfair it is to the universe.

But still you go on. You have to.

So, that is it really. I get up everyday because I must.  Because I’ve got things to do. The harder it becomes, the harder I try.  It’s not rocket science or the deepest darkest secret, but it is what I do.

I know at some point in my future, I won’t be able to, so for now, no matter what, if I can, I will.

Well, that was all a bit serious. Have a hug, they are great for your wellbeing *HUGS* 😘

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Gosh! Another train

Let’s pray to the various gods of travel that this train keeps to its timetable.

I just want to enjoy the journey, eat my complimentary food, quaff on my complimentary coffee and watch the beautiful British countryside roll past.

I have had a great weekend after arrival. Except perhaps the ‘big family dinner step brothers 40th birthday celebration’ which was just as fraught as an arachnaphobe in a bucket of spiders. But I will breeze over that and focus on the awesome time I did have.

I have been looked after like a queen.

My aunty duties have been carried out to the best of my abilities and I was covered in cuddles and snogs. (Even the youngest… we haven’t had much face to face contact but speak on the phone and he knows me as a name on cards on presents. Well, I was allowed into his life pretty much 100% from the second he saw me. Phew. Makes me extremely happy. And my perfect grumpy 16 was actually open in conversation with me. I have magic powers, must have).

Spending ‘quality time’ with my sister was great. We got to flump on the sofa and crochet, watch the boys doing scooter grand prix out the front of the house, eat some amazing food (she does the BEST fry up and mince and tatties ever!) Also just being there to give her a mental prop up with everything that goes on in the house. Her kids are hurricanes on legs. I thoroughly enjoyed it!!

Anyway… On the train, the sun has come out. Must be a sign.

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Aren’t they FABULOUS!!!?? (I will try next time to get a picture with dad in too… He was hiding behind the door for most of this)

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Sun trying first thing this morning to poke through clouds.

I’m on a train again…

This is 10000% better than my last train journey. For one thing I’m going to go and have some fun with the old family rather than be herded into small offices.

I have had good coffee, Orange juice, bacon… And we haven’t got past the first stop.

I have had to swap seats or be trapped at the window… No biggy.

Got to say, the scenery cutting over to Carlisle is gorgeous… Properly undulating hills, mix of rounded and pointy forest (native species and the forrestry commission fast grow pines) and I swear I saw an erratic drumlin!!

I am trying to get pictures but I’m on a pendalino, going quite fast and scenery is whizzing…

Comfy ride.  Nice staff.

Proper Virgin train service this.  No crisps and bananas for me today!!

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The landscape there is allegedly wind farms…. They are in there somewhere.

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And an awesome cloud form.

Right.  I’m off to stare outside a bit more.

I think I will blog my family over the weekend. Need to get decent Piccies!!

Have an awesome day.

****EDIT****
DEPARTED Edinburgh at 10.51am through to Birmingham New Street. ETA 15.05
Overhead line issues and a train breakdown on points at Crewe. Eventually on the move and then train terminated at Stafford. Train was supposed to take me through to new street but then terminated at Wolverhampton. (The staff at Wolverhampton were superb by the way, I had a bit of a travel anxiety attack and broke down on the guy who was on the customer service desk )
I eventually got a train to arrive at Birmingham New street at 5.40pm as opposed to initial arrival eta of 3.05pm.

Was a nightmare!!!!! ARGH!!!!!!!!
But weekend was AWESOME

It’s a thank you and a recommendation…

My beautiful and wonderous sister treated me to a massage.

Such a simple statement. But let me expand slightly.

My fibromyalgia makes it damn near impossible to get anything even close to a back massage.  (Tried it for a while through my chiropractor and whilst it was lovely having it done, I could barely move afterwards..bruising, muscle seizure and such horrible pain.)

I have been somewhat stressed of late, the last six months being, in all honesty, a right fucking mare.. culminating in the quick trip to hospital for the “not clots” episode.

Work’s a bitch, home life is frantic and buying the house has all sorts of mental repercussions.

Basically, I was frazzled.

I was chatting away to aforementioned lovely sister about wanting to get away from it all for a while and do pampering. We came to the conclusion that money and logistics were against me, but what a lovely idea.

I get a random text from her after we talk saying:
“Do you trust me?”
Well, yes….
Not to cut my hair etc…
“Can I have your bank details?”
Ok… A thousand thoughts cross my mind… But she’s my sister and this is intriguing…
Send them over…

“Check your bank”

SPA FUND DEPOSITED.

Ok, so I did burst into tears a lot… I called her and was still quite blubby.

She had called the Lush Spa in Edinburgh and gone through all the treatments to find one that would work for me.

She had bought me “the spell’

I can’t tell you what this one act of kindness did to me. Having booked it up, having the day to look forward to…Oh, I can’t tell you!!!

So, it mainly concentrates on your feet (which is great, they don’t hurt much) and its based kind of, on reflexology.  There are parts where your head is massaged (cue VERY big hair at the end of it) and it is all done to a wonderful bespoke soundtrack.
Before it begins, you are asked to write down a concern or issue, it gets put into a copper kettle, set on fire and disappears… The whole thing is about taking a step to move on.  Like how perfect can something be for me???

Anyway, as the guy finishes I take the deepest breath I have taken in six months, the pain has gone from the lower levels…I take another deep breath.
Oh my God..I can actually fully breathe!

I had not realised how much tension I was carrying round. How shallow my breathing had been. How afraid of the pain I had become and the lengths I had gone to to avoid it.

I could bloody breathe.

And you known what, I can still do it today.

Yes, I still have pain at the very fullest extent of my lung capacity, but I’m not expecting miracles here.

I even had a fantastic nights sleep.

I do highly recommend the Lush Spa. The treatments may not be for everyone, it’s not a regular day spa experience… But they do go in for some ace holistic approach treatments.

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I also highly recommend having my sister.  She is such a thoughtful, kind, generous person. She has a bucket load on her own plate, but she stepped out and done a surprise (cos I would have said no if she’d asked..) that has had such a surprising outcome.

Anyway, I’m gonna go and breathe some more…

Thanks Kizzywiggle, you are properly awesome you are!!!

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Awh!!!! Sisters!!

Oh God. Another epiphany…

Holy crap.
What a day.

I’ve watched some serious shit on telly whilst working.

One was ‘the boy who wants his leg cut off’ and the other was ‘before I kick the bucket’

Firstly, the strength of this little kid who was having to live with some serious mobility problems and pain. He was such a little dude. And he knew how to express his emotions. His parents were fabulous.

Secondly, the lady who had terminal tumours and no bucket list.. it was a great insight into how someone copes with the shit that gets thrown at them.
She’s a proper awesome person.

So, I don’t know if anyone else ever watches things and puts themselves in that situation…

Between him and her I had an overwhelming feeling of ‘I’m not that bad’.  But at the same time I’m not ok.

And its ok to feel like that.

I have an illness which is not fatal.  I will die with it not OF it. Massive difference.

However, it turns out I have gone through a lot of the same emotions that terminal patients and amputees have.

I am also confused.  I am  stuck in a place where I should be fine really. So I’m fine, right!?

Then I have days where I am floored. And I forget I have a legitimate reason to.
And this doesn’t include recovering from the tumour removal which seems to be going on FOREVER. Or the new little lung related things that crop up just to keep me in the medical loop. (I’m sure the NHS just miss me sometimes).

I am allowed to feel like I have lost something.

My future is not what I imagined when I was, say 20. However, I have no idea what my future ‘should’ have been anyway.  But I still feel like potential has been stolen away, by an issue that makes me too weak to chase after it and get it back. And if I do have energy to snatch even a hint of a fun day back, the payback is emmense.

I hate that. I am allowing myself to hate it.

I have had a good cry today with the people on the tv. They have given me perspective.  And its not ‘oh, there’s always someone worse off than me’, it’s more that shit happens. You dont have to be a frikkin ray of sunshine to still be an awesome person and get through each day.

I can get through each day.  I’m not living each day as if its my last because that would be totally over dramatic, but I am going to appreciate every day for what it is.

If it’s a doing things day, I will do the shit out of it.

If it’s a rest day, I am gonna go with the flow and rest up.

I am not terminal. I do not have to have a limb chopped off. I do have a condition which I will manage on a day to day basis. It will not rule me.

BUT…. I do have to accept the days that are not peaches and cream.

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Oh I love Deadpool… It’s kind of on topic, but what the hell if it’s not. It’s Deadpool and he kicks arse. And its always what my sister says about me and my mum.. 🙂

Housewarming BBQ. Oh yeah, awesome!

Finally had the house warming BBQ I had been promising the girls for ages.

It was really good. Full of food and fun.
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I slept through Sunday, pretty much.  Working from home on Monday as I am still recovering.

Wow, I knackered my self right out!!  Admittedly, it was a long day preparing the food and hosting as well as keeping two BBQ things alight and making sure I didn’t salmonella people, but two days to get over it is a bit extreme.

Hey, Fibromyalgia…this is getting less funny.  Thank god I have the opportunity to work from home.

I have also been tinkering around the house, filling the gaps in the bedroom floor, painting a mural in the bathroom, generally being stressed about things.
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I mean to be honest, I should do less, but its really hard. I dont know how to.

What is lovely is that the sun has decided to come out for a while.  Streaming in through my new windows, ah! its lovely!!