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 : 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