Saturday, 31 December 2016

2016 be gone 😘



As we head into the New Year, now is a good time to reflect on what has been a year filled more drama than an episode of the Kardashians!!

1.       Thank you 2016 for giving me all my ups and downs
2.       Thank you 2016 for forcing me to face my health issues head on
3.       Thank you 2016 for teaching me patience
4.       Thank you 2016 for giving my voice
5.       Thank you 2016 for helping me from my true self
6.       Thank you 2016 for giving strength
7.       Thank you 2016 for giving me confidence
8.       Thank you 2016 for making realise that “it is what it is”
9.       Thank you 2016 for allowing me to find my “tools” to be in control of what is best for me

While it has been a hard year and one that I would not like to repeat, I feel that I have come to the end of the year so different to who I was 12 months ago – I’m feeling happy, content and I feel like the old Naomi is back in the saddle again.

2017 I will be starting it with a new work challenge and its one I plan to grab with both hands and just run with it - I’m very excited for what lies ahead J My health issues are going to be a life-long challenge for me and something that I will need to continue to stay on top off but I am supported by my family and friends so I know I will be ok πŸ˜ƒ

So 2016 thank you for coming but now It’s time for you to pick up your shoes and slowly make your way into the past. πŸ’œ


Wednesday, 30 November 2016

Enough is enough!!!

We are approaching the festive season which I admit is my favourite time of the year but I have found that my diary seems to be once again filled with doctor’s appointments, physio appointments and not to mention my impending surgery hanging over my head and to be honest I’m feeling overwhelmed and slightly bummed that I’m not embracing the whole Christmas cheer, so I’ve decided that all appointments are to be cancelled/rescheduled until the new year with the exception of one appointment with my Neurologist.  Other than experience more pain than usual at the moment there does seem to be some order in the madness of my life and rescheduling appointments allows me to enjoy this new found calmness that has come over me.

Not been able to see any extended family for Christmas this year has left me feeling a bit home sick for my parents who have also had their fair share of medical things to attend to, but this was something that I knew I would have to deal with when we moved interstate, but the more I think about it I realise that it has been over 12 months since I have seen my family which is crazy as we live interstate not overseas, but again health has been the main reason for not getting my ass over the other side of the border, so this needs to be rectified and early 2017 I will have to get back to NSW and get my family fix.



I have started my reflection early and I’m hoping that 2017 treats me better than 2016 but as usual I’m trying to look at things from a positive light and know that I have grown/changed as a person for everything I have gone through but “ENOUGH ALREADY”!


So for the next 4 weeks I will be soaking up all things Christmassy – Christmas Crowds, Christmas Shopping, Christmas Songs and Christmas Movies and I make no apologies for it πŸ’œ

Sunday, 6 November 2016

Please remove my insides....

My trip to the surgeon was a success, there was not begging or pleading on my behalf. 

I’m currently waiting on a  phone call from the Surgeon’s nurse or fairy god mother and advise me of my operation date or as I call the day I claim my eating habits back, yes the Gallbladder is being removed and fingers crossed I will be all good to gorge over Christmas. The lovely surgeon has placed me on the urgent but not life threatening list (the surgeon is a god) so I should expect a call any day now, which also means I need to pack my bag in anticipation of the phone call, it feels a bit like waiting to go into labour but no happy little bundle of joy at the end of it all – maybe I can ask for my gallbladder and bring that home.

In other news I have an appointment this week for another independent review of my work cover injury.  I can believe it has been almost 12 months to the day that my foot was run over by the buggy and still we are no closer to anyone having any answers – MY doctors have answers and I have moved forward and started my own treatment and have reached acceptance of my resulting injury just melding into my life but clearly 4 doctors opinions is not good enough hence the independent review set up by the insurance company – so stay tuned.

Two weeks ago I got the call from Injury Management confirming that there is in fact admin work at head office that needs to be done, so much excitement on my behalf but then the old question was asked “what the hell do I wear”.  Now not having been in an office/corporate environment for a while I was stumped on the appropriate attire, so sadly (actually happily) hubby and I went on a shopping expedition to try and find appropriate clothing.  As I head into my third week at head office my clothes are “on point” and I have slotted in without any fuss and I have to say I am absolutely loving every damn minute that I am there, it feels great to have a purpose every day and to be working in a team atmosphere but I do miss my station crew and but it is nice not having trains going over the top of you every 10 mins so head office and I are getting on brilliantly.

So I sit here on my bed reflecting on what I have going on at the moment and I’m feeling positive which is not something I have felt for a while.  It has also dawned on me that it has been 12 months since my Fibromyalgia diagnosis and fingers crossed once the independent review has been sorted and once my gall bladder has been removed I can move forward and just deal with living day to day with my Chronic Illness and hopefully my next update will be the obligatory photo of my in a hospital bed drugged up and ready to be wheeled into the operating theatre


Thursday, 6 October 2016

Did not expect THAT

For the last 3-4 weeks I have been feeling slightly off – not particularly ill, just not feeling great.  

It started with abdominal pain which I assumed was all part and parcel of fibro so I just brushed it aside and continued with life but 2 weeks ago I noticed that whenever I was eating particularly if it was a big meal or when eating three decent size meals my stomach would bloat/swell.  At first I put it down to my Irritable Bowel and my doc and I agreed that we didn’t really want to introduce more medication so we decided to try some Mylanta for a week and see how we go. 

Over the week I noticed that the pain was increasing and I was in excruciating pain after one particular meal and since then I have not been able to stomach food nor tolerate it without any pain.  So I have been surviving on toast, crumpets or BBQ shapes.  Now I know I wanted to lose weight but this was not the way to go about it but even if I was trying to lose weight It wasn’t working as I was noticing that the swelling was still occurring – so to re-cap basically everything I was eating was causing some form of swelling to the point that I could have been mistaken for being in the FAMILY way again and to top it off my pain was increasing each day.

So back to the doctor and after declaring that despite the Mylanta was working to some degree with my digestive issues (no details required here) I was feeling pretty crap – it helped that today was the worse I had felt so she could see first-hand, and to help things along I drew over my stomach to highlight the areas of concern.  Now I honestly thought it was still my Irritable Bowel but no it’s turned out that I have a Stomach Ulcer!!! Now I was not expecting that at all – so now we are back on the “test merry-go-round” bloods, ultrasound and possibly a camera shoved down my throat yuck!!!!

I’ve gotten pretty good at pin pointing what is normal pain or balance issue for me and have been able to self-manage with medication, pushing through the pain or rest if needs be, but I’m still struggling with “when to seek medical advice” for any new or existing pain, I tell myself that if the pain gets too unbearable I will drag myself to the hospital.  Had I seek medical advice sooner I wonder if this Ulcer could have been avoided instead of me ignoring it?  I will never know the answer to this but all I do know is that I just need to get manage the pain and get through this next round of tests and hopefully they will all come back showing nothing abnormal and fingers crossed that the medication is working and to start enjoying food again and continue on my Weight Watchers journey :)




#downbutnotout



Wednesday, 21 September 2016

SMART Program


I recently went to an Information Session called – SMART Program (Self-Management and Resource Tools) and walked away feeling well informed.

The aim of the SMART program is to increase our knowledge on persistent pain and to introduce patients to an active approach in managing pain and to help develop strategies.  We talked about the types of medication that we may be on and what type of effect it may have on you long term.  I have already spoken about the immediate side effects of my medication but I didn’t even give much thought what long term effects the medication may have, nor did I really think about being pro-active in having the relevant blood tests to ensure that I am not developing any sort of long term effects now because of the medication – I suppose I was just caught up in the cycle of “I’m in pain and whatever it takes I will do”, so this has been food for thought for me.  We briefly touched on “Is Medication a cure, what else is there”.  This is something that I have definitely thought of so it was good to see that the program does encourage other methods of managing pain but it can be bit of a viscous cycle as I have found.  The need and want to do some exercising sometimes blows up in your face when you spend the next couple of days recovering, so instead of being the “go hard or go home” mentality I need to adapt my thinking to “slow and steady wins the race” and the big take home for me was “once the nerves have been damaged they may heal but will never behave the same as they did before the injury/damage”.  Once this statement had been stated, everything become so clear.  Research has shown that people who develop Fibromyalgia have developed the condition possibly after an accident/injury/illness and for some reason this creates an increased sensitivity to in the Nervous system.

I have been pouring over the paperwork that was handed out at the session and after reading and thinking about the information, I feel that I am doing everything within my power and capabilities to try and adapt to my new normal with the exception of setting myself some goals.  It’s all well and good for me to take my meds everyday but I feel I can be doing more.  I have a one on one session with an Occupational Therapist next week to discuss one of my goals and I have selected the one that I believe will be critical in helping me feel like I have a purpose and will give me back the old fire in my belly. 


Stay tuned :)

Sunday, 18 September 2016

Why do I have good days?



This week I have had days where I wake up feeling really good and there have been days where I’m ready to throw myself under a bus and this got my thinking, why is it some days I wake up feeling better than others.

I had one morning in particular where I woke up and the fogginess and confusion didn’t seem to be hanging around and it’s days like this that I want to bottle this feeling and it makes me want to get all the things done that I can’t do when I’m having a bad day.  Anyway back to why I have good days and I realise that I have subconsciously made some changes to my life and I like to think that this has played a part
  •  Drinking lots of water, sometimes up to 2.5 litres a day, lucky for me I love water so this has been an easy one for me to stick to but I have found when I don’t drink enough water I feel sluggish.
  • Cut out a lot of junk food/processed food but still indulging maybe once or twice a week.  I found myself whinging about my weight gain whilst shoving a biscuit in my mouth!!! Medication plays a huge part in the weight gain but eating crap is just not helping my cause
  • Routine…now this is a big one for me and it’s one that has taken me a while to get down pat.  Waking up at the same time every morning and going to bed at the same time every night has allowed me to take my medication at the same time each day and it has also helped with getting the correct amount of sleep at night
  • Embrace the good and letting go of shit.  There are just somethings that you just need to not waste energy or emotions on.  For pretty much the whole time my husband and I have been together he has always said “don’t stress about things that are out of your control” sadly it took me to get sick to finally realise this – don’t confuse this though with frustration because this condition can leave you feeling frustration beyond belief but these days I just let a lot of things slide because there are much more things I can be using that energy for.
  • Having a bath every night – now, this one is just something everyone should indulge in if they can, it not only helps my muscles and joints it also allows me to just lets me block out all the white noise in my life and just be in the moment.  My perfect world would be to sit in a bath 24 hours a day at optimum temperature of about 24 -25 degrees, absolute bliss :)
  • Laughter  -  Everyday you can pretty much guarantee that I'm laughing and its usually because of something I have done or said, one must learn to laugh at themselves.

Now I can’t say that all these things are the magic answers nor does it stop me from having really bad days, but it has helped bring some order and structure to my chaotic life.  

Now tomorrow could be a complete disaster and everything may go to pot but, I’m in a better place now than I was 6 months ago when I had no structure and quite frankly feeling like fish out of water 


Why do I have good days?





This week I have had days where I wake up feeling really good and there have been days where I’m ready to throw myself under a bus and this got my thinking, why is it some days I wake up feeling better than others.

I had one morning in particular where I woke up and the fogginess and confusion didn’t seem to be hanging around and it’s days like this that I want to bottle this feeling and it makes me want to get all the things done that I can’t do when I’m having a bad day.  Anyway back to why I have good days and I realise that I have subconsciously made some changes to my life and I like to think that this has played a part
  •  Drinking lots of water, sometimes up to 2.5 litres a day, lucky for me I love water so this has been an easy one for me to stick to but I have found when I don’t drink enough water I feel sluggish.
  • Cut out a lot of junk food/processed food but still indulging maybe once or twice a week.  I found myself whinging about my weight gain whilst shoving a biscuit in my mouth!!! Medication plays a huge part in the weight gain but eating crap is just not helping my cause
  • Routine…now this is a big one for me and it’s one that has taken me a while to get down pat.  Waking up at the same time every morning and going to bed at the same time every night has allowed me to take my medication at the same time each day and it has also helped with getting the correct amount of sleep at night
  • Embrace the good and letting go of shit.  There are just somethings that you just need to not waste energy or emotions on.  For pretty much the whole time my husband and I have been together he has always said “don’t stress about things that are out of your control” sadly it took me to get sick to finally realise this – don’t confuse this though with frustration because this condition can leave you feeling frustration beyond belief but these days I just let a lot of things slide because there are much more things I can be using that energy for.
  • Having a bath every night – now, this one is just something everyone should indulge in if they can, it not only helps my muscles and joints it also allows me to just lets me block out all the white noise in my life and just be in the moment.  My perfect world would be to sit in a bath 24 hours a day at optimum temperature of about 24 -25 degrees, absolute bliss :)
  • Laughter  -  Everyday you can pretty much guarantee that I'm laughing and its usually because of something I have done or said, one must learn to laugh at themselves.

Now I can’t say that all these things are the magic answers nor does it stop me from having really bad days, but it has helped bring some order and structure to my chaotic life.  

Now tomorrow could be a complete disaster and everything may go to pot but, I’m in a better place now than I was 6 months ago when I had no structure and quite frankly feeling like fish out of water 


Friday, 2 September 2016

The Week I Wish I Could Forget.....FAT chance!!


This week has been a hard and long slog. What started out as a good week turned into a week fraught with pain and discomfort?

On the 24th August I was called “fat”.  Now I’m not very good with dates and remembering things but being called fat is something unfortunately you don’t forget.  Now I’m not naΓ―ve to the fact that I have put the weight on and I don’t feel that I need to justify it but I do feel that my weight is something that I need to get under control.  So Monday after work I started my new workout regime with low impact exercises and some weights thrown in for good measure, as I’m not really keen for the tuck shop lady arms and after I was finished I had a soak in the bath and felt quite good about myself…

Tuesday morning I woke up to feeling quite horrendous – my whole body had decided that it was going to slowly but surely malfunction.  I had pins and needles in my feet, my muscles were burning, my head was pounding, my back was spasming, my foot was burning and I felt like I was getting a head cold as well.  Throughout the day the pain intensified the more I was cleaning and walking around and all I could focus on was getting to the 3pm mark and just going back home, I even messaged my husband and said please don’t call me pain is insane and I just can’t conduct a conversation in the foreseeable future and as the days progressed the pain was still there but was settling as each hour passed until we finally got to a usual pain level of 4-5 which is normal for me.

Now that I am at Friday I do wonder if it was from the exercising or was it my body just telling me it’s time to really slow down and just rest.  What scares me the most is that I use to be that person who would go to the gym every day and exercise my ass off, I would be that person who would occasionally go for a run, I even ran the 10km Sydney Bridge run 4 months after fracturing my wrist in two places and enduring 2 operations with a further one a few months after the run, so to not be able to do low impact exercising and to not be able to do my job to my full capacity infuriates me and scares the shit out of me.  It’s not just the fibro it’s the foot injury which is a big part of the problem and from the looks of things it’s never going to get better or back to its former self, so I know find myself at a real cross-roads, and which ever path I travel unfortunately it will be out of my control.


So after the week from hell I’m now following doctor’s orders and only working 4 days a week with Wednesday as my rest day. As for what my working life holds for me, I can’t be certain and only time will tell but for today I feel like I’m through the pain fog and will start back on the exercise regime next week and fingers crossed all will be ok….

Sunday, 7 August 2016

Let’s hear it for socks & shoes

Last week I have hit another milestone.

After 9 months of only wearing ballet flats I have finally been able to place a shoe and a sock over my injured foot…YIPPEE and insert gentle happy dance!!!!

My injury from last November has left me with a foot that may never return to its former self and while this has left me feeling frustrated and at times feeling like a spectator in life I needed to come up with a game plan that would allow me to feel like a participant and not a spectator.  My plan was to increase my medication regardless of the side effects and just plough ahead and it looks like my plan worked. 

Now anyone that knows me knows that once I start to feel good then there really is no stopping me, so my excitement was off the scale when my doctor and Injury Manager agreed to me working 3 hours back on the floor alternating with 1 hour admin and 1 hour cleaning on a daily basis for the next fortnight and then review again with the hope of me being cleared to resume normal duties. So I have started my new regime and have found new energy and whilst my foot bloody hurts together with the rest of my usual hurting areas, I find that I can almost ignore it whilst I’m busy being productive and using my body again, but of course I possibly overdid and spent Saturday in almost complete shutdown which I suppose was to be expected, but waking up Sunday morning feeling better I know that my body can and will sustain what I throw at it but I am always remembering the many voices of those closest to me when they say - slow down and take it easy, don’t over-do it and to quote my mum “Rome wasn’t built in one day and it doesn’t matter how long it takes as long as you are making progress”.


While I will always have Fibro and Complex Regional Pain Syndrome and many other issues, and that will never change I now feel that I have a bit of my old life back and each day I will push myself harder than the day before because I know that I can do whatever I set my mind to and I as a side note, due to the increased walking I have lost 0.6kg – life is good #mynewnormal


Sunday, 31 July 2016

Listen to your body

The last couple of weeks have been an eye-opener for me, quite literally J

I have been noticing some visions issues of late ie, things blurry, not able to focus on things until I put my glasses on, things still out of focus even with my glasses on.  I had even noticed that it felt like there was a film of gel over my eyes and no matter how hard I rubbed them nothing made any difference so I would just wait it out and eventually my vision came back to normal.

About 9 days ago I was walking to the station and out of the blue I lost complete sight in my right eye, again I did the usual rub the eye – nothing, clean my glasses – nothing so again I just waited it out for about 10-15 minutes and made my way slowly to the station.  By the time I got to work I was ok but feeling slightly off but continued as usual throughout the day at work with a slight headache.  
Now at this stage I just put the vision loss to a potential migraine but thought I will just mention it to the doc when I see her in two days’ time.  Imagine my surprise when I tell my doc and her reaction was "ummm this can be a sign of a stroke and probably should off gone to the hospital".  So she ordered an urgent ultrasound of my Carotid Artery to ensure that there was no blockages and strict instructions to go to the hospital if it happens again.

When looking at the signs for a TIA or Stroke I can honestly say that I get these symptoms on a daily basis and when living with a Chronic Illness it is very hard to know what is part of the illness and what is a new symptom – there has been a few times my doctor has said to me “your really should of gone to the hospital” Now I’m sure there is an inner voice in me that does tell me to go to the hospital but I obviously ignore it for the same reasons we all do – I’m too busy or I really don’t want to sit in the ER for hours on end, I will just take a couple of Panadol and get some sleep, I need to cook dinner and the list goes on and on. Without getting all preachy I cannot stress enough how important it is to LISTEN TO YOUR BODY…Its turned out for me that I wasn’t having a stroke or TIA thank goodness but I spoke up and said to my doc things are just not right, there has been a shift in how I’m feeling and some days’ it feels like I have regressed back to the beginning, so that been said I now have to make an URGENT appointment with an Eye Specialist and when I see my neuro next month request that we run another MRI just to be on the safe side – it’s possible that all the vision issues are due to migraines but as I wasn’t getting a slap around the head migraine thing happening it best to get the MRI done.

So to everyone out there that has something niggling or just doesn’t feel right, I plead with you to get it checked out, even if you think it is nothing it could very well be something, without your body working to full capacity then you cannot be the best version of yourself and as for me well I like to think I’m unbreakable which can only mean I’m close to perfection J


Sunday, 10 July 2016

Fuck it!

I remember the days when it would take me 24 hours to generally recover from a hangover and I would to think that was hell, now I find myself taking nearly two days to recover from a bit of light walking!!!

Saturday I decided to make the most of the nice day and headed into the city for a bit of walking around and maybe treat myself to a coffee.  Now, I find myself on most days having an internal argument which goes along these lines “grrrr I’m hurting, yes but you need to go to work, yes but I don’t think I can do it, yes but you know once you get there you will be fine and on and on it goes!!! When it comes to working and life I set very high expectations of myself and anything less is not acceptable and I’m finding now that this is my stumbling block.  Having time in the office due to my foot injury it has given me time to reflect and figure out what I really want and the conclusion is “physical work is just not for me anymore” and when I think, oh I can do it, it will be fine, I think back to the nights I would come home in such agony from walking and pushing my body beyond it capabilities and all because I set the bar so high for myself.   For the last 8 months I have forgotten what that pain felt like until this weekend.  It was suggested by my doctor and Injury management that I try some light duties back on the floor at work and see how my pain levels and overall health goes – so I have agreed to a one week trial for 1 hour each day because if you don’t try you will never no, but more on that towards the end of the week. 

Back to Saturday, whilst it was enjoyable I now feel like I have a hangover that just won’t go away….I hit my low on Saturday afternoon when I had to ask my husband to dress me after getting out of the bath, as the urge to puke and pass out while lying down was too overwhelming…and Sunday afternoon was a real treat,  I realised that slowly the pain is becoming a 12/10 – nothing is working, the pills don’t work, and It’s another 7 hours before I can take anymore, the hot water bottle is not working, sitting is painful, lying down is uncomfortable, the body starts to sway when walking,  it feels like a force is pulling me back when I’m standing still, the head is full of stuff and even my toes and finger tips ache – they are hurting now while typing and all I want to say it fuck it – fuck you fibro, fuck you vertigo, fuck you meds for not working

And here we are Monday morning and again the internal argument started but the perfectionist in me won and the pain is probably a 10/10…so today whilst I’m at work and feeling really pissed that I feel like a 73 year old, and that my body has gone to pot again, I’m going to sit and whinge to anyone that will listen and also count down the minutes until I can go home and whinge a little bit more…


Thanks for listening

When you get out of bed

There are days were the desire to do anything other than sloth on the couch, with my blanket and just watch mind numbing television are quite appealing but then there are days where you are present and accounted for and this particular Sunday I was present.

We ventured out as family for a bit of car shopping.  Our Son had finally gotten his P’s and was now ready to put his big boy pants on and hopefully purchase his first car and after looking at lots and lots of cars he finally found one that he loved. 

Life is full of opportunities and missed opportunities and I for one was not going to miss this “first time” milestone.  I’ve never been a competitive person, I’m always happy to come second in the middle or last, but I have found myself lately competing against “fibro” and finding that I’m coming out in front.  It makes me feel that I’m living how I should be and not to the confines or constraints or my illness

So congratulations my son on the purchase of your first car, I hope it gives you many years of enjoyment and memories and I’m so happy that I could share this moment with you. Drive safe :)


PS….when are we doing a maccas run…. 



Monday, 27 June 2016

What about me :(

So my long suffering husband has been struck down with a case of Ebola (i.e. a sniffle) and to top it off he has had a lower back issue which has been plaguing him for a while but as we know, life gets in the way and you just don’t get round to having things checked out.

Now a miracle occurred in my house yesterday – my husband informed me that he made an appointment with our doctor to have his back checked out.  I was stunned but relieved as I can see how much pain he is in but as we know men don’t like to be rushed when it comes to receiving medical attention so I just let it be and let him figure it out for himself J

Living with someone who has a chronic condition can be hard, stressful, frustrating, upsetting and tiresome, yeap I admit I’m a pain in the backside, and then there’s the whole “it’s all about the sick person” so when my hubby saw our doctor she did ask “so how’s Naomi”!!! My husband wanted to say “hang on, what about me, I’m here now not her” but no he said the stock standard response “up the shit”  Anyway the appointment progressed and now hubby is having some scans to see what we are dealing with.


We are very lucky to have a great doctor who works very closely with myself and my husband, not only is she a medical genius but she is sympathetic and is a great support to us both, so when she asks about me when I’m not there it just confirms that we were extremely lucky in the doctor lottery, and to my long suffering husband, for once it is about you, so enjoy it while it lasts :)  and here’s hoping you get over your Ebola (sniffle) and whatever happens with your back we will get through it..

Friday, 24 June 2016

The weight of it all....

In order to get better you need to take your medicine – right???? Well this is an inner battle I fight on most days.

It all started back with the Vertigo.  My neurologist and I have tried quite a few medications before we found the one that worked best for me.  Side effects is also something that is factored into the whole process.   A few of the side effects for a lot of the medication is – Nausea, headaches, dizziness and weight gain!!!! Great, so on top of my Vertigo which for anyone that is not aware of what it actually is – imagine looking at something and it just spins and moves but you not actually moving, a lot of people think vertigo is about having a fear of heights, for some people being up high and looking down can bring on a bout of Vertigo.  At my worse I would have a shower and after drying my hair I would need to lie down as the room was spinning uncontrollably, I would get off a train and the platforms were moving – no joke, and with the spinning comes the nausea and blinding headaches, so to have medication that WAS supposed to make me better to only make me feel worse at times was a gamble I wasn’t sure I was ready to take.  Finally we found one that worked and once I got use to the medications the side effects subsided and yippee no weight gain!!!!

For my Fibro I am on two types of medication – now the medication I’m on doesn’t actually cure what I have it’s all about the management of the illness.  I like to call one of my meds – “The Devil Drug” it is horrendous and of course this one has caused my weight gain.  To start with, the weight gain was minor and I needed to factor in that I was now doing a sedentary job and not physical work so weight gain was to be expected, but every time I increase my dosage with “The Devil Drug” it is another couple of kilos that creep on and when taking this drug twice a day I get double the gain.

Now, for a while I was ok with that because I finally felt that I had a handle on my condition and thought well a 5kg gain is probably not the worst thing to happen.  Now a few months later and some elastic waisted pants – (very unflattering) and baggy tops, I find myself tipping the scales at a not so flattering number and in all a total gain of close to 15kg and I haven’t even hit the maximum dosage required twice a day so not looking forward to inevitable which is more weight gain.

I’ve been able to cover the weight gain well with scarves, baggy pants, big tops, jumpers and jackets HALLELUJAH for winter.  So when a fellow colleague who, admittedly I haven’t seen for a few weeks saw me yesterday and said “oh wow look at you, you have put weight on, my god you can see it in your face and in you midsection”!!!!  Any confidence that I had just hit the deck :(  Anyway I managed to deflect the conversation to the old “what have you been up to blah blah blah” and yes internally I was crying.  I don’t think my colleague was being nasty I think she was just stating the obvious and some people just have no filter on what they say, but it did get me thinking, is it really that noticeable? And am I looking at myself one way and people are seeing something completely different?  Or have I subconsciously accepted the gain so therefore I’m not seeing a big difference?  I’m still trying to figure out which one it is.

I have drilled it into my daughters head from a very young age “it’s not what you look like on the outside, it’s what on the inside that matters” I have to remember that I am the same person I was before this all started, and on the days that I feel no amount of medication works I will just pop into a nail bar and get me some pretty done. 

While I don’t like the weight gain or the medication, and quite frankly some days I really wonder if the medication is  doing anything at all, but when I have days of clarity, free movement and feeling good  I have to accept it’s just a necessary evil.  I’m just grateful that it is winter and I can cover up the weight gain, but I’m not looking forward to the summer months, may have to invest in some kaftans or Moo Moo’s…. 

Monday, 20 June 2016

Grieving what I once was,

I try to not think too much about what my life use to be.

I was never one to feel the need to climb mountains or be a high flying corporate person, In actual fact I had never really thought about what my life should be like, all I knew was that I wanted to be healthy, happy, have money and a family, other than that I was happy to just cruise along in this thing called life.  It’s so true what people say, you really do have to appreciate and enjoy each cause you don’t know what is around the corner and I was about to find out in a big way!!!

It has become apparent that things have drastically changed in my life and this illness has taken away my ability to do many things – I don’t think it’s so much THE NOT DOING THINGS it’s how quickly the changes have happened.  Grief is such a powerful thing and whilst I haven’t lost anyone, I do feel that I have lost myself in the last 2 years.

Now as I have mentioned I never felt the need to climb mountains but I have always been a great walker, I could walk for hours at a time and would get enjoyment and pleasure from it, but looking back I wish I really did appreciate it more than a means to get from A to B and sometimes C.   I grieve the fact that I can no longer walk for long or walk without having someone hold me, to stop me from stumbling and it’s quite embarrassing when older people are overtaking me because I’m too slow.  I’m grieving for my ability to crouch or bend at the knees, I’m grieving for the person in the bunny suit which is actually me 4 years ago, I grieve for the moment when I wake up in the morning and not being consumed with pain or un-refreshed sleep, I grieve for my ability to think on my feet and be able to walk into a grocery store and no that I am there for a purpose, these days I find myself walking around aimlessly and not remembering what I’m there for, I grieve for the days when I didn’t need to have multiple lists – I have TO DO lists, I have MENU LISTS,  SHOPPING LISTS, DON”T FORGET TO DO A TO-DO LIST.  It’s frustrating that my memory is like a sieve and that I have trouble remembering words or putting sentences together, these days having a conversation with me is almost like a game of charades!!!!!


Some days I’m firing on all cylinders and those days I find that I’m quite accepting of my new normal but there are some days (not many) that I’m so pissed off that I have become a prisoner to my illness, but I think in accepting that this is what it is, my grieving for what I have lost is making way for what I do have which is a greater appreciation for what my body can do, I pace myself each day and in doing that I have started to appreciate my surroundings and life in general.  I like to think of myself as Naomi version 2 – bit battered and bruised but still goes alright :)  When my kids were growing up I found myself saying to them “Suck it up Princess” and I now find some days I chant this to myself.  Maybe I should go out and get myself a tiara so at least I look like a princess when I’m giving myself a talking to



Wednesday, 15 June 2016

Serendipity

Serendipity : When you find good things without looking - unexpected good luck has been bought to you.

I have many favourite words but Serendipity would be up there as an all-time favourite.

How many of us have truly experienced Serendipity?  Making it home just in time before if rains and I think, that was good luck that I left work that little bit earlier so I didn’t get wet.  Whilst it was great not to get wet I think that was more about good timing then about good luck!

My serendipity moment was meeting my husband – (yes Q the violins).  We meet in a pub and I was introduced to him by one of my friends. Now at the time I was not looking for anything romantic, I had just turned 20 and was enjoying life and meeting new people, so imagine my surprise when we ended up together that Christmas Eve snogging outside Woolworths in George Street Sydney - yes classy all the way J and the rest they say is history.

Quite often I find myself thinking - at this stage of our lives we should be able to sit back and reap the rewards of surviving 20 years of marriage, and raising two children successfully, but we find ourselves having to navigate through my condition.  Now I’m about to get soppy so if you need a bucket go right ahead because it may get a bit nauseating.

To say I hit the jackpot when meeting my husband is an understatement, his unconditional support and compassion for me is unwavering.  Now I know at times I can be demanding and downright difficult but he just rolls with it, he knows when I’ve had enough and just need to take time out, he knows when I need to go hard and push through the pain and when I crumble because of it he picks me up again.  Thank you David from the bottom of my heart xx

Living with a chronic illness/disorder, I sometimes wish that I could not make it all about me and just for a while make it about the one that loves me unconditionally.  My husband has always said – If you can’t control the situation then there is nothing you can do about it and this is finally sinking into my thick skull.

I didn’t ask for this illness/disorder and really, nobody asks for any sort of illness it just happens just like my husband coming into my life.  We found each other without looking and I’m sure our life together will be filled with many more bumps and great memories.  

So Christmas 1993 is when I experienced Serendipity - When you find good things without looking - unexpected good luck has been bought to you




Monday, 13 June 2016

Appreciating the now :)


Since my diagnosis I have tried to live each day the best way that I can and to try and appreciate the now, but this is harder some day’s than others.  

This morning I, and the rest of the country woke up to the news of another senseless shooting in the USA.  Like many other people I sat watching the news and scrolling through social media, to try and find out as much information as I could, and to try and get my head around what has happened. 

I’m angry that we have to yet again hear about another tragedy, I’m angry that the victims have had there’s lives cut short because their lifestyle did not appeal to ONE person, I’m angry that many families lives have been changed for the worse and they can never go back to how it was yesterday, I’m angry at myself as well – whilst I have challenges and my life has changed, I still have a life and I will wake up tomorrow morning and continue my life which cannot be said for the innocent 50 people who lost theirs.

So, I need to remind myself and others to appreciate the NOW as life can be stolen from you within a blink of any eye.


Love is Love

Thursday, 9 June 2016

Control, it’s time to own it again…

I have spoken about how it feels when your body lets you down but I haven’t even touched the surface of “When your control has been taken away from you”

Having sustained a work injury back in November 2015 – buggy ran over my foot, all tests once again showed that there was no structural damage to the foot so all is good.  Well, all is NOT good and once again I find myself having to sit and wait and place my life basically into the hands of doctors and Insurance Companies. 

Now I’m no stranger to doctors and in actual fact I have been very lucky, I have found a team of doctors who help me manage my condition and without them and their advice I would be screwed!!! But as I find myself still limping and having pain in my foot 7 months later I wonder who is actually got my best interests at heart. The holdup seems to be with the insurance companies who refuse to listen to me or even work with me to figure out the best treatment of my injury, so I have to ask the question are they working with me or against me!!!

So, today as I sit in a coffee shop awaiting to go to the first of two doctors, I have to remind myself how far I have come with my fibro and how much my foot injury is impacting my fibro and my quality of life.  So it’s time to back the control and be my own advocate and start telling the doctors what I want and not what the insurance company want.


Wish me luck J

Wednesday, 8 June 2016

Pet Therapy – no matter how small the animal is

I love animals and nothing gives my greater pleasure or joy than hanging out with a furry creature.  I’m that annoying person who cannot walk past a dog in the street and want to stop and have a pat or just a hello, I can’t walk past a pet shop without having to go inside and check out the dogs, cats, birds and rabbits.

Whenever I’m having a down day or have been in a funk for a while, nothing cheers me up more then finding the nearest pet store.  A few months back whilst in one of my worse funks for a while, my husband took me to a RSPCA on our way home after being out for the day, and needless to say I wanted to adopt every single animal there, but I knew that if I pouted to much when being told NO then I would not be allowed back so I walked in and just sat with the cats and waited for them to come to me…I walked out that day feeling the happiest I had in a very long time.  We have been back since and I’m happy/sad to report that no furry creatures were smuggled out under my jacket – trust me I would of if I could run fast enough!!!

So today at work my male counterparts discovered this little creature and I was in animal heaven and yes it is a mouse :) So he was scooped up into a box and handed to me and I promptly sat staring and talking to him for a good 15-20mins then gently stroked him and whispered sweetness in his little ear, sadly my boss declared that no mouse house would be purchased and he would not be a permanent member of staff, so he was taken to a quiet area and he scurried off to find some tasty cheese and other mice to scurry around with.

Pet therapy is the best and cheapest form of therapy around and I finished my day’s work as a very happy worker bee .

All creatures great and small are beautiful :)




Saturday, 4 June 2016

Salt ‘n’ Vinegar Chips

A while back I had one of my episodes at work – full blown vertigo attack to the point where I could not walk and had to be carried out of the office, to the sick bay by my trusty work colleagues and on-site security.  Now I’m no stranger to this sort of thing and am starting to figure out what works best for me and that is usually get me lying down on my side and just wait for it to pass.  A couple of hours later my husband and I are performing our usual dance – pick’s me up from work, gets me in the car and we make the trip home from the city once again with me apologising profusely and him swearing at the peak hour traffic!!

The next morning I wake up and try to function as normal but the body is just not having any of that so I have to throw my hands in the air and surrender, so the couch it is!!! Now by this stage I have a headache from hell and nausea city has hit and low and behold my son mentions salt ‘n’ vinegar chips and I’m hooked.  So off he goes to the shop and come’s back with 1 family size of chips and I’m hooked.  For the rest of the weekend its nothing but Salt ‘n’ Vinegar and magically the nausea has subsided.  So for the next 2 weeks it’s Salt ‘n’ Vinegar for Breakfast, Lunch and Dinner and I’m taking the big size, family size, not your pissy snack size!!!


Now I know it wasn’t the healthiest of diets but I have come to realise that I have to do whatever It takes to get through each day and if I have to start the day with salt and vinegar chips and if these tasty buggers are what stops me from having to be carried out yet again then I will eat my chips for breakfast – but only the snack size J

Friday, 3 June 2016

One step in front of the other

Nobody likes to wake up in the morning but the reality is that we have to get up and start the day if we are ever going to move forward in life. 

I use to wake up in the morning and dread the fact that once I took my first step for the day I knew the pain would hit me like a tone of bricks and would leave me feeling deflated and just downright cranky.  Fast forward 18 months to now and I still have the pain when I get out of bed but I have learnt two things from it.  Number 1 – it is pain and it won’t kill me and Number 2 – by getting out of bed each day I’m challenging myself to be better.

I consider myself to be stronger mentally than I was 18 months ago and for that I am grateful for my diagnosis as without it I would not have come to this light bulb moment J

When your feel like your body just lets you down

It’s Monday and I’m back at work. After having a terrible weekend which saw me flat lined for most of Saturday, I can honestly say that it’s nice to be back in a routine.  I find myself having more bad days than usual lately and I’m not sure if it’s the medication or the weather.

One of the more frustrating things about this condition is my memory or lack thereof it, they call it the “Fibro Fog”.  I find myself at times standing in shopping isle’s wondering what I’m here for and having no idea on the purpose of being here in the first place which happened on Saturday – forgetting where I have put things, not able to string a sentences along, not able to find the right word for an item and feeling like I’m slurring and speaking another language. 

Another term used frequently with this condition is “Flare”.  Everyone’s flares and length of flares are different. For me it is when my whole body just completely goes haywire which brings me back to Saturday – Headache and whole body ache, struggling to walk, pins and needles in the feet with a burning sensation, digestive issues, Vertigo and balance issues, vision compromised. Now I’m no stranger at all to these conditions as I generally experience one of these issues on a daily basis but it’s when everything hits you at once is when I struggle.  So at that point I just gave it the middle finger and decided to shower and take myself to a coffee shop and sit in the sun, and it worked for a maybe an hour and by the time I got home I was completely and utterly wipe out but my goal was to GET OUT OF THE HOUSE.  I was so angry with my body as that was the moment I realised that it had let me down but then I also realised that I to had let my body down as It was clearly sending a message to me that I needed to slow down which I did and spent the rest of the afternoon on the couch with remote in hand.

I find it hard to balance between not letting this get to me and knowing when I need down time and being truly ok with allowing myself down time but It’s something that I need to work on and hopefully I will find the balance. 

Sunday morning started out ok and got better as my husband took me to visit the RSPCA and get some Pet Therapy and boy did it help – I may off looked like the crazy cat lady sitting amongst all the Cats but they certainly pulled me out of my funk and I could not get the silly grin off my face.


And here we are back at Monday – can’t say I’m feeling brilliant but I’m out of the house and hoping and trying to be the best person that I can be today J