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

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

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…. 

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..

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…. 

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 ♡