Transit of Venus 06.06.12 is the Last for 105 Years!

Hello fellow readers, bloggers, everyone in the Universe!
Today is a great day! -(well when I started to write this entry it was actually the 6th of June, 2012)- ...anyway, I was privileged to be witnessing with my own eyes, an event in the cosmos that is very rare indeed. An event known as; The 'Transit-Of-Venus' across the Sun. In fact - I was with my 2 youngest sons-[mini-minigoat; & mini-mini-minigoat], so we got our telescope out of the house - and into the backyard. We set it up and were instantly rewarded with a truly awesome sight...

Well we didn't look at the Sun directly - that would be bad, right! What we did was, we set up the 'sun-viewer-attachment' which let us view the sun safely - reflected onto a viewing-plate...and it was awesome! The planet Venus was about the size of a match-head, located in the bottom-one-third of the Sun's face - but also alongside Venus were 5 or 6 Sunspots, each about the size of a small-pinhead. It was so cool watching history in the making. This phenomenon won't be visiting the eyes of earthlings for another 105-years!

This is a short video I took of the event, for posterity - with my 2Mega-pixel phone-camera; ...apologies for the quality, but you get the gist of it; minus most of the details unfortunately, there is a glimpse of Venus at about the 2m:20s-mark; and again at the 8m:30s-mark!...We also have a cat called 'Patch'-(though his screen name is 'Woodpuddle-Cat', but he makes an entrance for the camera too!...and manages to take my attention off the subject.

But you don't know what you don't know?

There are some moments in my days that require me to 'pull my socks up' and be brave when inside, I feel less inclined. One such moment was tonight when I was going through my facebook messages and I found one from an old friend of my family... A beautiful couple, with a great family too; 3 children-[2x girls and older brother].
I was reading their message - and I learned of their tragic loss of their oldest child. I have no words to explain what feelings were racing through my mind at that moment. I could only freeze, numb at the realisation of such a trauma - I instantly thought of my own family - and what if? I dread the thought, but I felt pain as if it was...for a moment.
I wrote back saying nothing of my realisation of their loss - I choked, I couldn't bring myself to mention it. I was feeling guilt, shame, sadness - but I feel hollow somehow. I knew him-[when] he was younger, but he was a wonderful son, and brother. I will treasure his memory. I will come to my senses and keep in touch with them.

International TURTLE Day Today!!!

Hello again everybody - I thought I would take a few minutes out from my own story to tell you a little bit about our local natural wonders. You see - I don't know how many people like turtles in the world?..But I think there is probably millions; or tens of millions! All I know is this fact - that my whole family loves turtles!!!!!!!! If it's a turtle in our local creek; or a turtle on the tele; in the news; on the ABC or BBC or whatever - we love ALL of them... especially the ones in our creek!

We have beautiful little 'longneck's with amazing eyes that 'check you out'. Then there is my wife - she is a complete mad-hatter fan of ALL-things-turtle - my wife, Ozjoe is a self confessed turtle NUT. One of the reasons why I love her so much!
We've even 'renamed' a local council-park - 'turtle park'. Just because there are quite a lot of Australian-long-necked-turtles nesting in the beautiful ponds and surrounds of the park - needless to say it's a favourite place to go for lunch & just watch them go about there day-to-day!
Oh yeah, I nearly forgot.....Happy International TURTLE-DAY!

Do you love turtles like we do too?

TM-Day in OZ Tomorrow...17th May, 2012

I nearly forgot to mention it! Tomorrow is TM-Day in Australia, and we are celebrating it with an exciting get together in Brisvegas - at the Spinal-Injuries-Association HQ in Woollongabba. It should be 'awesomeness'...!!!
We will be having a couple of guest speakers-[not sure who?]..oh wait, I think one of the speakers is a Professor of Child-Psychology at the Childrens Hospital in Herston - and he's a recent survivor of TM too. So, I'm sure he will have some really interesting things to say...
I think we might also be having a 'hook-up' via satellite/skype or something like that - with somebody really interesting too!
Sorry I'm not being all that specific - I'll tell you all more about it tomorrow. Till then, then.

Have you been to a TM event in your area - recently?

It is what it is...so suck it up, and move ahead...#2

I sometimes have days where the brain's in gear but the body is in neutral - or somewhere grinding between 1st-gear and reverse! ..even after I've had 2-days of solid rest!! So here goes - this is a little bit of [I told you so]. Last weekend I helped at our local youth-organisation's 'Leadership-Course'..not an issue, I've done it before-[15-months since my last stint], so anyway, I was really enjoying it - the comraderie between Leaders and the connections with the youth, they all make it worthwhile. I got a lot of positive feedback from my peers and the parents of the youths too! ...but then it started about 4-hrs after I got dropped back home on Sunday evening.
All my joints in my legs started trembling, muscles started chattering, electricity-shocks up my back! My wife OzJoe said - "I told you so you bloody idiot"...hehe.
...Anyway, 2 days later I was still feeling like crapola!...and I've got this weekends activities - that I must pace myself for!!!


Have you ever done something like that - knowing that the consequences would be bad?

I don't know U...but U inspire me 2.

Social networking is wonderful for reaching out when you don't get out much / you know? ...Specifically Twitter - for instance I'm communicating with total strangers, but I feel like their my friends because they get me! ...sometimes, I feel it more so than the bloke next-door. It's a cliché, I know but it means a lot when you get a message or an email from someone that gets IT!!!
I just noticed that I've only done 2 blog-entries in April...sorry everyone, I will be more tuned in this month I just have been having some really bitchin-hand cramps in the last few weeks and that makes my smile turn upside-down :(
I've posted a couple of new entries in other areas of my blog / pages etc., and I've been thinking about doing some audio-entries of  my blog-posts too. Just need to figure out the technicalities - so.. Oh, and I've just updated my you-tube channel with a couple of videos, so I would love you to check it out.
Thank you everybody, I've just hit 450-views on my blog...awesome! I'm inspired....

I don't know U, but U inspire me...

I don't know you, but you inspire me...I follow this blog-[see link below]. This is a story about a woman that has a fighting-spirit, a love for life. She has TM too! This is her story, as told by her daughter, [Jaclyn] in a blog called; I wear blue [click on the link below to see her story] The Best Mom on Wheels

Jaclyn Allmon at I Wear Blue - 1 day ago

Christopher Reeve Foundation has announced the 10 finalists for the 2012 Best Mom on Wheels competition. All women are so very deserving of this award. Please take a moment to view the finalists and VOTE for the story that inspires you the most. For me, my vote goes to my mom, Jan Allmon, a finalist in the competition!! Way to go mom. You are the BEST!!! (Watch a video about my mom)...just click on the link above.

NDIS...update from the rally yesterday!

Ok, so I was too bloody sore to go to the rally myself, in Brisbane. But I got this email update from the organising committee;

Dear Supporter,

What an amazing day!

15,000 Australians around the country have sent a message, loud

and clear. It's time to Make the NDIS Real.

Today Canberra responded. Prime Minister Julia Gillard addressed

the Sydney rally and announced the National Disability Insurance

Scheme would be launched in four sites across the country next

year, supporting more than 10,000 Australians with a disability

at launch.

Opposition Leader Tony Abbott joined passionate campaign

supporters in Perth and told the rally "everyone should get a

fair go and that's what the National Disability Insurance Scheme

is about".

We have had some great news today – but we can't stop yet. We can

't stop until the NDIS is introduced for everyone, for good.

And here's a clip of Tim McCallum - singing 'You're The Voice' at the Sydney Rally-(and some nice candid moments, shots of supporters with the PM, too!

It is what it is...so suck it up and move ahead !

I've had something of a realisation - in the last week...A change of heart, but in a good way!
It started, a couple of days before departure. I was lying in bed - I'd just woken up thinking I was stressing about getting ready for making a return to my Scouts. Another year had rolled by since the last canoeing-expedition. Back then, I was a lot more 'able' (than I am now), I was worrying about all the things that might go wrong-(with me) if I went on this trip, in so many ways I could be a 'ball & chain', or that my pain would get so bad, or I'd have a fall and be alone and not be able to get help!
Barrier, after barrier..I would be a failure!...I must have layed there for a while.

Then it was like a great big hand just 'slapped-me-in-the-face', a voice inside me said..'my, my, what about that. It is what it is...so, suck-it-up and move ahead !!!!!!!!!!!
So I did something about it. I realised that everyone I love in this world, love me for being me, my family and friends know what I've been through. Physically, I don't do what I used to do-(before TM) - but I hated myself for it, not thinking that my attitude had changed. It was my attitude to 'it'. My TM is with me, and the car-accident-(in 2011) has heightened my TM-symptoms. So I'm moving ahead.

NDIS - Revolutionising Disability Services

This is a special time in Australia's political-landscape. For our Federal-politicians have an ideal opportunity to make a difference in this country, when it comes to 'Righting-the-Wrongs' - the chance to make it real for the people with disabilities AND their carers!

Well said Julia - Julia Morris is one of Australia's most loved comedians. Now, she's joining the fight to tell our politicians that it's time to MAKE IT REAL. I think its things like the huge financial hardship families living with disability face, that I feel those not impacted by disability do not understand. Lets hope the NDIS becomes a reality AND that it really does make a difference for us all!  

But you don't look sick...#3

This is an update from my last BYDLS-[But You Don't Look Sick] entry. Since then, I've been to the local hospitals-[2], one-[the PA] for a '2nd opinion' on my condition?...and the other-[the RBH] for a check-up and some new tests to do with 'my plumbing'. The results-[of both visits] were something of a shock to the system, because I wasn't expecting anything new...

My symptoms had been constantly tracking 'normal' lately and I thought I was mentally 'OK', and so I was in a good place...So, I'll share the RBH-visit first... I have to start 'self-cathetorisation'. The process was explained to me and I was given enough supplies to take home 'to-start-with', so ... 

I can report - it's not so bad really. It's just like having to do something for the very first time, relying on the verbal instruction of someone you've never met before, knowing that if you fail - you will be in a lot of pain and discomfort - and only yourself to blame, for the 'mess' on the floor!...[just like building my first 'Lego' set]...

Challenger-Deep...the world's deepest abyss!

I want to send my sincerest congratulions to Mr. James Cameron; Hollywood-Director; and now...Explorer-Extraordinaire!

For in the last 24-hours, during the most dangerous and daring journey - he participated in a solo-trip-to-the-bottom-of-the-sea...That's right, Mr Cameron is now only the 3rd-human-being to travel to 'Challenger-Deep'; the Marianas-Trench. Over 11-kilometers down...an unbelievable and courageous feat of endurance.

This trip was made possible by an equally courageous little-submersible, constructed in Australia over the past seven years by a few dedicated specialists...well done to you all!

Check out this link;  http://news.nationalgeographic.com/news/2012/03/120325-james-cameron-mariana-trench-challenger-deepest-returns-science-sub/

New to this...#7

Hello friends! It's been about twelve-(12) days since my last post, so I think I'll update you on my progress with the 'dreaded-lurgy',. I'm feeling better now than I was before I sent my previous post. This one has been a bit of a stayer (with me) this time, I was only thinking about it today - about three-(3) weeks or so! I'm past the worst of it - thank heaven's.

Today was the first time this year that I've felt 'cold' on the inside, enough to need to put on an extra layer of clothing - jumper and jeans. Just at the end of the 1st-month of Autumn.  I'm not proud of it, either! The rest of my clan is still getting around in T-shirts & shorts, though my wife 'Woodpuddle' is sitting on the lounge with her favourite-blanket...lol.

All that tells me is - that I must be an 'olde-fart' after all! So, at least we've got  the goodsense to 'stay-warm'...just may be acceptance too, I should speak for myself... Last week, I went for my latest check-up! ...It was my 2nd-appointment to the Urologist-Clinic at RBWH and I was nice and early, thanks to my wife's punctuality being what it is - brilliant. The line-up was short, it was 08:30 in the morning, so I knew there wouldn't be a problem.

New to this...#6

Firstly, I would like to ask a favour of you. Be patient with me..., please - say a Big Happy Birthday to Pi.... It's 3.14.2012 , so that means - it's Pi Day!!!... Happy Birthday to Pi, Happy Birthday to Pi, Happy Birthday to Pi, Happy Birthday to Pi - XXII / VII  - ok, I think I've said enough, or have I ??? For if it wasn't for Mr.Pythagoras, we would not be able to fly in planes, travel in trains, or drive in automobiles...hehe. Thank you very much.

This week, I've been layed-low by the dreaded-lurgy - the flu! In fact, my hole family have got it, all of us - but in various degrees of severity. From a 'two-hundred-tissues-a-day' runny nose-[TJ]; and sore throat-[MG], to a rolling-cough-[WP]; to wheezy-gurgle-[me]; oh - I forgot to say that [JD] has sailed through, unaffected-[or uninfected].

On the TM-medical front, I've started my increased doses of my drugs - and 2-weeks on, I'm feeling no 'weird' side-effects, or anything scary!..so I will continue on into the frontier. I have a couple of chores for my good son MG to do; 1.forms to collect from my local clinic tomorrow, and 2. Get a couple of prescriptions filled. 

Sorry folks - but I'm getting jerky in the legs and my hands are cramping too, so I'll be out of energy soon, my 'spoons' need a recharge and that means some snooze time... till later - please have some 'bloody-wishful-thinking' readers!

sincerely,
Glendon.

Unconditionally...

Our family is the best, most often the first point of support when we have a medical moment! What is it about our family, that intangible bond called on to bring you back-to-earth, when you have moments of selfishness? ..but still with support and love, unconditionally.

There are times when I think about my journey...the usual - Why me?...blah, blah,blah! It's always been my family to bring me back and put me in my place - stop being the victim! Ok  - my family's support of me is the main reason I've decided to do this blog.

But You Don't Look Sick...#2

Lately I've been having lots of sleeplessness, sometimes going for 20hrs at a time. My body-clock is awry, to the point that at this moment - 2:32am, I feel not at all like going to bed... I tend to rest, only when I'm completely exhausted - that way I have the most chance of actually sleeping for more than 2-hrs, as my pain levels at the present, prevent me from enjoying a 'normal' sleep pattern-[7-8hrs]. I find myself blogging! Sharing my thoughts and feelings with you is therapeutic, and part of that helps me to feel a bit more normal. Thank you. I want to share something with you that really tugged my heart-strings, I was so emotional my eyes leaked down my face!

I've just finished watching a beautiful documentary, about a couple of Australians in 1960's London, when it was still legal-to-purchase a lion-cub... so they did and named him 'Christian'. They nurtured him and loved him so much they wanted to set him free. So they  went from Harrod's of London to the Wilds of Kenya. Here is some of the documentary - a reunion...I think the best bit;

New to this...#5

It's amazing when good friends get together, even if it is only by the telephone, oh there I go again, giving away my age! ...Talking on the telephone - for 108-minutes, no less!.. See, I can talk (my butt-off), when a buddy is on the other end of the line...

I've been talking with Louise - a fellow TM'er-[for 7-8 years I think]. She's been like a rock to me. We can talk about (TM) things; pain-levels; treatments old and new; our own progress - on a day-to-day level. In hindsight, having someone there to listen to you - when all the 'bad-stuff' has been happening to your body [still, after months and years].

International Rare Disease Day...!

Well, it's 3:33am in the morning here in Bris-vegas! I apologise for any typo's in advance, ok..I have been to my GP today! For another fortnightly check up, this time it was to complete some forms, check my BP, and a review of my visit to Dr.P.S's clinic..The forms got done  - my BP is in the 'good' range - and the review was to inform GP about changes to my medicine-dosages, prescription-renewals etc..

Today is "International Rare Disease Day" - I have uploaded 'my-story' + photo to this site;
Rare Disease Day I urge all of you to have a look at this site - I think it's really awesome! What a brilliant idea - to have a whole day dedicated to increasing the 'awareness', worldwide. This is just the vehicle we need to get [our politicians] more pro-active in the understanding of these 'rare' ailments.

Besides that - I have included another 'page', titled; "Related Research" [see link -  http://www.qbi.uq.edu.au/071211-much-needed-good-news-for-sufferers-of-chronic-pain ]. This is where I'll be posting some of the latest pieces of truth, and ideas from medical-professionals that  I have researched - around Australia and New Zealand. It will include information related to all things neurological, not just TM. The first piece is from the QBI-[Queensland-Brain-Institute], while it is rather 'specific' & quite technical, never-the-less it's a very good read...I have also added a new link in the 'helpful links' page - directly to the QBI. It is very informative.

Happy Birthday GoatDodders..!

It was my birthday two days ago-[Wednesday], so I did what you suggested.. I did some 'bloody-wishful-thinking'.. that's right and it works! It's definitely better than feeling sorry for oneself, which I don't recommend at all-[feeling sorry for yourself that is]... I was upbeat  - It's not every day you  turn 46, right!  That's 16,801-days on this beautiful BLUE ORB!!!

For my 46BD - from my beautiful family-TRC, I got;

• an Apple that makes music and a card-of-plastictunes
• a whiteset of earphones by Son-y
• coloured cottons XXL2-fit my skin...and more stuff too!

Anyway, so I'd just been for my four-monthly check-up on the previous day - with Dr.P.Sandstrom's outpatient-clinic at PCH-[actually, it was with one of his registrar's], a 'minion' no less. I think that I'm up to six-[minion's], now.. but it's cool - Dr.P.S keeps a pretty close-EYE on his entourage  and they like to ask a lot of questions too. I always get a great response from them when I tell my 'story'- he,he. 

We had a good discussion about things - any progress or setbacks. I like going over my history all over-again as sometimes I know things they don't know I know! I'm getting better at it, sometimes I remember the correct terminologies to use like; 'peripheral-neuralgia', and 'ulnar-nerve' too [hey, it's not so bad in Australia], for being an 'outpatient' in a Hospital-Clinic, ..thank goodness...

My dosage for 'Gabapentin' is increasing  - chiefly to cover my 'background' neuralgia pain, which has been aggravated since my 'car-accident' last year; and my dosage for 'Amitriptyline' is increasing - to help me with my peripheral-neuralgia. My dosage for 'Digesic'-[patch] is staying [x2 per week]. So, that was my 'grease & oil change',  I'm good... for another 3 months!

p.s.    ...and for all the right reasons - I love my family sooooo much!!!

But you don't look sick...!

Thank you for all the support, it's really amazing!  I've titled this post; "but you don't look sick...!" because it relates to a little yarn-of-truth called, "The Spoon Theory" written by Christine Miserandino, a complete stranger to me. Christine is living with 'Lupus' and I must sincerely thank her for helping me realise [my] pain isn't always felt by those I love and care about. And, that I have to take account of the decisions I make when it involves others, especially my family. I can relate to her story [me living with Transverse Myelitis]. I can also thank my wife 'Woodpuddle', for finding this yarn on the Internet and sending it to me, some time ago.

I want to share something with you that happened to me yesterday. My beautiful wife 'Woodpuddle' is so bloody patient with me! ...So yesterday, WP came up with the idea for all of us at the TRC-[my family] to go for a drive in to 'Southbank', then to Scouts - and I wanted to go along too. I was 'quizzed' by my dearest;"are you sure you're up to this?" I said; 'yep', nodding in the affirmative! Well, off we went in the car..it wasn't too long , before travelling-in-the-car become more [painful], than I realised. Pretty soon after that, I started to argue with everyone about the shortest-route to take! ..I didn't even think; 'Why am I arguing?' No, not even when my youngest - TJ said; 'I love it when you and Mum have a cranky with each other, it's so funny!'... 

But the thing is, I should've understood that "it just didn't matter" - we were just out for a FUN time!!! - Eventually, after a few minutes of awkward silence, 'The Penny-Dropped' and I apologised, very honestly to all my family. We continued to Southbank, then later to Scouts. The day was resurrected - looking back, I feel like a fool because I lost my cool. My wife new I probably wasn't up to a full day, just yet. I pushed myself  - and I'm paying for it, today - I am living the spoon-theory. Please read on...

"The Spoon Theory"
by Christine Miserandino   www.butyoudontlooksick.com

My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.
As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?
I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.
As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.
At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.
I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.
Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.
She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?
I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.
I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.
I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.
We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.
When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.
I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.”
Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.
After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”
Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my “spoons”.
© Christine Miserandino