Even in this place you are worthy

She sat across from me, a maroon blanket covered my legs, the heater was on and here I felt safe.

I knew it was time to talk. 

I needed to start to work through the last few months. 

This was a different type of pain for me; an aching in my soul. 

I needed to talk and not be fixed. 

I needed to talk and not have to filter my emotions to make the other person feel better. 

I remember on our first session she said to me “you don’t have to protect me, I'm not going to fall apart, I can handle this.”

I've spent my life trying to protect those around me from my pain that it took a long time me to be able to speak the truth without trying to filter it.

The words flowed out easily and I soon realised I'd been keeping so much inside.

“I am really scared”….there it was out

In the last two months I had survived two trips to the Emergency Department which resulted in being rushed into resus; an admission to hospital; being pumped full of morphine, prednisone and beta blockers; x-rays, ultrasounds, blood tests; a high dose of steroids injected into my butt; loss of my independence, confidence and sense of self which all resulted from one very nasty Lupus flare.

I had survived; we as a family had survived but now I was left to try and recover from the emotional trauma of this. Because that what it is trauma; what we have gone through was and continues to be traumatic.

The physical trauma is obvious but the emotional trauma is often forgotten about.

You’d think I'd be used to this by now. After living with Lupus for 24 years I should be used to the trips to hospital and everything else that is involved in living with this illness but the truth is I’m not and I don’t think I will ever be. Every time I get sick or become unwell it still affects me in some way. Sometimes it’s the smallest of flares that cause the most emotional pain. 

This flare however was not a small one...

I know that I rely heavily on my mental health being stable and strong. At a young age I learnt that I cannot rely on my physical health. I cannot rely on a well functioning body. I don’t have that luxury but what I do have and what I’ve worked so hard on is developing a strong mental and emotional resilience. If both my physical and mental health slip that’s when I know I am in trouble. This flare caused my physical health hit rock bottom. When this happens I find myself going into survival mode. There is not a lot of room for processing emotions and although I am fragile and physically at my worse this is when my mental and emotional strength kicks in. That’s not to say I'm not bloody scared because I am but I don’t have room to focus much on these emotions because my body needs all the attention. ‘Sleep, eat, shower, take medications..repeat’. All I do here is simply survive. I then find that once I start to feel a little better physically and I can move out of this survival mode my emotional and mental health will often take a hit. There is now more space to process and really start to feel and think about what I have been through. This place often feels extremely overwhelming as both my physical and mental health are low. This is the place I dread being in. I often feel like I loose myself in this space and I really do not feel like Liv. Physically, emotionally and mentally exhausted. I find that once I can begin ‘participating in life again’ that this phase will pass. Once I am able to find my ‘spark’ and feel more like myself my mental health will begin to rise although I never seem to lose that sick feeling in my stomach of when will the next flare start and I will start this cycle all over again.

“ I am so scared” I repeat the words again this time with hot tears streaming down my face.

I close my eyes at night and I am often taken back that resus room. 

"Remove your clothes, put on a gown and lie on the bed.” 

Next thing I know my gown is opened up and cold electrode pads are placed over my chest. A blood pressure monitor wrapped around my fore arm and a pulse oximeter placed on my finger. 

"What is your pain score?” 

The first time I am with Dan and I glance over and see him sitting in the corner letting the doctors and nurses do their job. He is scared but trying so hard not to show it. I feel guilty for putting him through this. 

“ I am just going to inject some beta blockers into your IV line, it might make you feel funny so we will go slow” 

“Do you feel okay?”

I nod as I feel the medication begin to slow down my heart rate. 

“ I am just going to get you some morphine for the pain”  

The next time it is Mum and Dad in resus with me. Mum is at the foot of my bed rubbing my feet while dad sits in the chair that Dan sat in just fifteen days earlier.

I can still vividly remember the sounds, smells, conversations but mostly I remember the pain and desperation I felt. “Please just make it stop!”

I have to keep reminding myself even now ‘Liv you are not there’. I went to the hospital last week for another test and even just driving up to the hospital gates I felt an overwhelming sense of panic and anxiety. I did not want to be there. I had to sit in the car and give myself a little pep talk before I went in. That’s when it hit me this has really affected me and that’s okay because I don’t think I’d be human if it hadn’t. Sure I live with a physical illness but this affects every aspect of my life.

It was this Tuesday when I finally got the chance to open up and talk about how I was feeling. I know to heal I have to talk about this; I cannot bottle these feelings up. I personally have found great benefit in a therapy called Hakomi. Find more information about it here Hakomi Method . I find this therapy extremely beneficial but I also trust, feel safe my therapist. She is gentle, compassionate and I feel she really understands me. I know that just like I look after my physical health I need to look after my mental and emotional health and this is one way that I do that. 

So I sat there and I talked, and I cried, and I talked and cried some more, and through this process I began to feel that sickening anxiety feeling start to loosen.

She looked me deep in the eyes and said “ I hear you are really scared right now, what you have gone through is very scary stuff, I really hear that” and in that moment I felt validated; I felt listened to and I felt acknowledged.

Near end of the session I spoke about choices and how I feel like my ability to make choices is severely limited when I am so unwell. “What are the choices you can make right now?” I began to think and list of really basic things like; I can get up and have a shower, I can take my medications, I can have breakfast etc then I began to think deeper and this triggered a different set of tears as I said

“ I can be a loving wife to Dan, I can be a loving daughter to Mum and Dad, I can be a good friend.” 

With a smile on her face she said to me “See even in this place you are worthy”.  

I took a deep breath and let those words sink in….even in this place you are worthy Liv.

I will work through all of this trauma and pain and continue to keep finding myself. I will at some stage get back to really feeling like myself. I know I've still got a way to go. I tell people right now I don't feel as acutely unwell as I did but I am still no where near back to where I was at. This past week has been hard again and we are all holding out breath that my steriod injection hasn't worn off but if it has then we will find a way; make a new plan because that's what I've really learnt through all of this..we are survivours and I say 'we' because I could not do this without my loved ones around me. Especially without Dan and Mum and Dad holding me close. I know they wont let me slip. They are the definition of love, strength and support. They are my absolute world and I cannot express how grateful I am for everything they have done for me over these last few months. It's hard on me but its also extremely hard on them. 

I am learning our worth isn't in our jobs or the money we make or our achievements. Yes those things are great but if all of those things were taken away from you what do you have left? Maybe the truth is our worth lies within our relationships. That's what is really important. If all those things I mentioned above fell apart who would you call on because those are the people you need to be putting your energy and time into. No matter what is going on in our lives we can always love and be loved and there is endless amounts of worth in that. 

.......even in this place you are worthy Liv.......

The Whole30 adventure is set to begin...

Let food be thy medicine

and medicine be thy food

- Hippocrates 

"Liv I think you should go gluten free."

" My friends Mum cured all her pain through not eating sugar."

"You shouldn't be eating tomatoes" 

"Have you cut dairy out of your diet?"

"Hey Liv have you gone gluten free yet??"

If I received a dollar every time I heard those questions or had diet advice recommended to me, let's just say I would be a very wealthy woman! While I know people are coming from a place of care and concern when they are offering advice, it can get exhausting to constantly hear. It often feels like everyone is trying to 'fix me' because I am 'broken'. Outward I would smile and thank them but internally I am yelling ' if I want to eat a bloody piece of cake or a slice of cheese then I will!'.
 (P.S this is not a dig at anyone! I am very open and receptive to advice I promise! I did wonder if I should probably take this out as I might offend someone but I think it is just a side of living with chronic illness that you experience and I want to be honest about it. Heck I know I do it to those I love as well!)

I have come to realise that I have lived in the mindset that I feel like Lupus takes away a lot in my life so if I want to eat (insert any food in here) then I will. I feel restricted in many areas and I didn't want to feel restricted with what I can eat either. Plus where was I going to get this extra energy from to maintain this new lifestyle? While I've had this mindset, there has always been a niggly thought in the back of my mind that I could try harder with my diet and the foods I put into my body but I always managed to quiet that with a packet of salt and vinegar chips.....

I knew (and hoped!) deep down that I would come to a place where I would decide to take more control over my diet and the foods I am putting into my body but I understood this was a decision I had to come to when I was ready in my own time. If I was to do this, it needed to be for me and not to keep other people comfortable. 

Drum roll please.....I AM NOW READY!

But where to start? Do I just cut out sugar or gluten or dairy or follow an anti inflammatory diet? The options are endless!

After much research and thought, I have decided to undertake what is known as the Whole30 program. 

What is the Whole30 program?

Certain food groups (like sugar, grains, dairy and legumes) could be having a negative impact on your health and fitness without you even realizing it. So how do you know if (and how) these foods are affecting you?

Strip them from your diet completely. Eliminate the most common craving-inducing, blood sugar disrupting, gut-damaging, inflammatory food groups for a full 30 days. Let your body heal and recover from whatever effects those foods may be causing. Push the reset button with your health, habits, systemic inflammation, and the downstream physical and psychological effects of the food choices you’ve been making. (https://whole30.com/whole30-program-rules/) 

In the past I have temporarily cut certain foods (mainly gluten) out of my diet to see if it helps control my symptoms, however so far I have been unable to find foods that trigger flare ups. Many times I have said to Dan that I almost wish I could identity a food that caused me to feel awful because then I would certainly stay well clear of eating it. The truth is, there are things in my diet that I am sure I am eating that are doing more harm that good and I feel that undertaking the Whole30 program, I will hopefully be able to pay close attention and undercover these potential food triggers. 

My lovely husband has decided to undertake this with me so for 30 days we will stay away from eating....

• Sugar - added of any kind, real or artificial
• Alcohol
• Grains 
• Legumes 
• Dairy
• Carrageenan, MSG, or added Sulfates  

 I must point out here that this is not to say these foods are necessarily 'bad' rather it is the idea that these are known foods that can cause unwanted effects on the body, the main one being inflammation.


Therefore we are able to eat:

• Meat
• Seafood
• Eggs
• Vegetables 
• Fruit
• Natural fats 

I know some of you by now are probably shaking your head and questioning why we are cutting so much from our diet. The simple answer is I AM SO TIRED OF LIVING IN PAIN. Something needs to change for me and at the end of the 30 days I still feel rubbish (which I highly doubt) I can take comfort in knowing that for 30 days I have fed my body whole, rich nutrient dense foods. 

I understand this plan won't sit right for everyone but it feels right to follow for me. 

For 30 days we will both focus on healing out guts. I like to think of it as using food to be my medicine! 

After the 30 days we enter a period of re-introduction where we will slowly add certain foods back into our diet and watch for any unwanted symptoms. This will be the crucial part for me where I will hopefully be able to discover foods that make my symptoms worse. 

I have read blogs where people have had debilitating symptoms disappear, people also report gaining more energy, sleeping better and just all round feeling better. There is a great testimonial page here which shows ways peoples lives have changed... https://whole30.com/2011/06/the-whole30-a-z-real-life-testimonials/

Dan and I have spent the last couple of weeks reading the Whole30 book, taking notes, finding receipes and familiarising ourselves with the program. We know to do this successfully we have to be prepared and educated. 

Our starting date is 2nd February as Mums birthday is on the 1st February and we want to be able to eat one last piece of cake haha! 

On Monday we spent the day cleaning out our freezer, fridge and pantry. We have filled two washing baskets with food we cannot eat and have decided to take away the temptation of having it in the house so will take it to mum and dads. We have sat down and written out our meal plan for the week and the all important grocery list. We also spent time writing down our goals and motivations for making this change as well as potential triggers (having a bad day, getting invitations out for dinner, having a flare up) and how we will overcome these (having prepared meals, communicating to each other, reminding ourselves of our goals). 

Bye bye temptation!

Dan and I have been laughing that the universe has been sending us signs all week that is time for us to start. My first sign came when I decided to have a piece of toast for breakfast only to have it get stuck in the toaster. We found some sausage rolls in our freezer so decided to eat them for lunch and with my first bite I burnt the roof of my mouth so have been left with a painful blister. Last night we had home made hamburgers which resulted in one of us having a very unhappy tummy for the rest of the night!! 

Right, I am off to stir my bone broth but want to end this blog post with a quote from the Whole30 book that really gave me the final kick I needed to do this. Stay tuned as we will share this experience with you!

This is not hard. Don’t you dare tell us this is hard.

 Fighting cancer is hard.

 Birthing a baby is hard. 

Losing a parent is hard.

 Drinking your coffee black. Is. Not. Hard. 

You’ve done harder things than this, 

and you have no excuse not to complete the program as written. 

It’s only thirty days, 

and it’s for the most important health cause on earth

—the only physical body you will ever have in this lifetime. 

Surgery to fix pesky finger tendons

It is not the strength of the body that counts, but the strength of the spirit
 - J.R.R Tolkien

I attempted to start writing this post last week however soon learnt that typing with one hand was tedious to say the least. I have now advanced to having seven free fingers so lets see how this goes...in advance please excuse any grammar errors in this post. My brain is still feeling pretty foggy. 

Just a little recap in case you have just started following my journey in June I had my first appointment with a hand surgeon in Auckland to talk about the difficulty I was having with my left 4th and 5th fingers. This had been an ongoing issue for about ten years and had just steadily got worse. For me, Lupus has taken a shine to my hands for some reasons which has left my fingers curled and stretched into some pretty unnatural angles.The tendons in my hands have taken a beating to put it lightly. 

After xrays, MRI's and one more appointment his diagnosis was:
incompetent extensor hoods, recurrent subluxations extensor tendon left 4th and 5th MCP joints causing secondary swan neck deformities.

In simple terms when I attempted to make a fist the tendons would slip (sublux) off my knuckles causing pain, swelling and a loud click this was now causing deformities in my fingers due to the stress being put on the tendons. Attempts to improve this will splinting had failed so surgery was my next option.

The video below shows the difficulty I had attempting to make a fist... 

Today I am seventeen days post surgery. 

Seventeen days filled with an array of emotions and new leanings perhaps my biggest being able to put my bra on with one hand!!

Seventeen days of time feeling like its going by so slowly to the realisation that I am now able to achieve more than a shower in my days. 

Seventeen days of swallowing pain medication or being told off for trying to be brave and not to take them. 

Seventeen days of anticipation, relief, pain, nervousness, frustration, tears, comfort, laughter, joy and love so much love! 

By the time it came to my surgery I felt physically and mentally ready. The timing was right and thanks to a three week pain rehabilitation inpatient stay my body felt strong enough to handle a surgery. I was confident I was going in prepared. It was time to get this next chapter started and then closed so I could begin to focus on living and not merely surviving. 

The week before surgery I was lying in bed with Dan and jokingly said  "will you still love me with a bung hand?"  his reply was " hunny you do realsie you already have a bung hand?"

20th October 2017 - Surgery day 

Mum and I traveled to Auckland the afternoon before and spent the night with our friends. Originally I wasn't due to be at the hospital until 2pm so this was going to make for one long day but thankfully the surgery timetable had been changed and now I was due in at 11am. I woke up at 7am and washed my morning medication down with a tiny sip of water. 

I then took a nice long shower and made sure to stop and appreciate being able to use two hands as I washed my hair. 'Soon you will have to do that with one hand' 'Soon you are going to have to ask for help to do that'. 

Mum and I drove into the city and found the hospital; Auckland Surgical Center. We were early so mum suggested we should go for a walk and look at some shops to fill in time. We walked into one shop and were greeted by a bubbly shop assistant who asked how our day was going? I plastered on a smile and said 'good thanks'...that wasn't a lie so far my day was going good lets just hope it stayed that way. 

Mum found some clothes she wanted to try on while I couldn't get my mind off the fact that I was having surgery soon. Mum asked if I was getting nervous and I replied I was okay I just couldn't focus on shopping when I was about to have my hand cut into. Before we knew it it was time to head into the hospital. 

Deep breaths as I walked. I was ready! I can do this! The receptionist greeted us with a cheery smile and proceeded to check me in. I was handed a menu and asked to pick what I wanted for dinner...I was in a hospital not a hotel right? That thought was quickly swept away as I was asked to go into the changing room and put on a gown. We were then taken through into the waiting room where I would now sit until it was time for surgery. I look over at Mum and smile and say ' well here we go again!' The two of us are pretty used to waiting rooms by now. 

I was called in to see the nurse where we went over my extensive medical history. Then she checked my blood pressure and heart rate which once she saw the results informed me I would need an ECG because my heart rate was high. No surprises there! I was then given compression stockings to put on and she even proceeded to shave my arm. 

Next it was the Anesthetist turn to be graced by my complex medical needs. Soon any anxieties I had were quickly replaced with relief. I felt in extremely capable and knowledgeable hands. I am reassured that I will be given enough medication to put me to sleep and keep me comfortable but he will not pump me full of medication. Just the right amount! I am also told he will give me a nerve block in my hand to provide post operative pain relief. I raise the issue of me being on long term Prednisone and he informs me they will give me a stress dose to assist my body and also give me IV antibiotics because I am more at risk of developing infections. 

The final person who comes to see me is my Surgeon armed with his black vivid. He proceeds to outline where he intends to make the incisions. "See you in theater very soon" Then he is gone and we are left to wait until it is my turn. 

Surgery on my 4th and 5th fingers on my left hand to re-balance tendons and repair swan neck deformities

At about 1.30pm I was told that it was now my turn. After a big hug from Mum and few more deep breaths I was taken into theater. I remember as soon as I walked in shuddering with how cold the room was. I was taken by the arm by a nurse and told they had a warm blanket ready for me. I laid on the operating table and was covered in a cocoon of warm blankets. Next I had a headband like device placed on my forehead which was going to measure my brain waves throughout surgery. The Anesthetist assures me it won't tell them my bank account number. Then he is by my right arm and inserts a cannula where I will receive my medicine. The last thing I remember is him saying they are going to give me something to relax and with that it was now up to my surgeon to work his magic. 

The thing I was most nervous about in regards to surgery was how I was going to feel and react to the anesthetic when waking up. I have a vivid memory of waking up after my knee surgery and being in the most horrendous pain then the world going black again (thanks morphine). I then spent that night continuously throwing up and here's one for you being unable to pee which resulted in me having to have a catheter. I think we just reached a new level of sharing! 

This time my experience was the complete opposite I am pleased to report! I wake up in the recovery room and the nurse is bringing me a lemonade ice block. No pain, no nausea...did I even have surgery? I look down at my hand and there is no denying the fact I had surgery. My arm is in a bulky cast but thanks to the nerve block I cannot feel any pain. 

From the recovery room I was taken to my room where I would spend the night. The surgeon comes in and tell me that everything went well. His opening sentence was "well Lupus is a shit disease to get" I reply, "you don't have to tell me that!" The operation was a bit more extensive than he thought and he found my tendons in a worse state than he was expecting. However he was able to do everything he wanted. My operation took just over an hour. I thank him and before I know it I hear a familiar voice and am reunited with Mum. Next thing Mum is taking a photo which is being sent to family and friends to let them know I am okay. We speak to Dad on the phone as he is away at a conference and I assure him I really am doing well. I can almost hear him breathe a big sigh of relief.  

The next friendly face to enter my room was my beautiful best friend Josy! This was one of the major perks of having the surgery in Auckland knowing that I would get to see her. She is quick to tell me this is the best she has ever seen me so soon after a surgery. Then we hear one more familiar voice down the hallway and are joined by Laura. It is so nice to be surrounded by so many caring and loving souls especially while being away from home. 

My dinner arrives and without even having to ask Josy is beside me starting to cut it up. I manage to eat a bit of dinner and before long a wave of exhaustion hits me. I reassure Mum that I am okay and for her and Laura to go and get dinner. It has been such a long day for her as well! Josy says she will stay and get me ready for bed. Mum tells me she is so proud of me and that she will see me in the morning. 

Josy has always had this way of knowing exactly what I need even when I don't know myself. The first step was to brush my teeth and wash my face. See I probably would have stopped there and just got back into bed. Josy suggests I get out of the hospital gown and she will help me put my pjs on. Much better! Then finally I sit on my bed and she plaits my hair. Have I said how thankful I am for her?! The nurse comes in to check my blood pressure and heart rate and I am told I need to lie back for a little while...thanks heart rate! Josy covers me in my blankets and I thank her for everything she has done for me. "Liv I wouldn't be anywhere else". 

I snuggle down and close my eyes but I am conscious of the fact that I am going to be woken at 10pm for my dose of IV antibiotics. I put my headphones in and doze in and out until the nurse arrives. After my antibiotics I am asked 'what is your pain score now?' with a puzzled look on my face I say '0'. I was beginning to feel a bit like a fraud. Here I was just had surgery and I had NO pain while the lady in the room next to me struggled to gain any relief. To say I was thankful for no pain was an understatement. I am reminded that the nerve block will wear off but to enjoy it while it lasted. The only pain medication I was taking was Panadol.

Sleep was pretty hard to find that night but I was expecting that. Between bells ringing, a four hourly Panadol schedule, two lots of IV Prednsione and antibiotics and regular temperature, blood pressure and heart rate checks there wasn't much time to sleep. My cast and all the pillows needed to elevate my arm seemed to take up most of the room on my bed so there wasn't much room for me to get comfortable. 

Early the next morning the Anesthetist came in to see how I was doing and I remember telling him I wanted to take him back home with me. I said to him how much easier the recovery so far had been since I had no reaction to the anesthetic. The nerve block also meant I did not require any heavy duty pain medications which helped prevent the drowsiness and nausea. I ask him if the nerve block will wear off slowly or quickly. I am told it varies; some people will get a tingly feeling and the pain will slowly increase or other people it just goes from not being sore to suddenly you feel everything. I nervously laugh and hope I am not that second person. I am told to stay on top of taking my Panadol and not to just wait for it to get extremely sore because then it is harder to gain control back. 

The Surgeon was next to visit who was pleased I was pain free. I told I am to stay in the cast until I see him in twelve days time where he will take the stitches out and I will then go into a splint. Now it is up to my body to see how I recover. He has done the hard work in giving me the best chance of a better functioning hand and now its my bodies turn to start to heal. 

My breakfast is brought in and this is when I learn my first lesson...The health care assistant places my breakfast in front of me and asks if I would like her to butter my toast without even thinking the words 'oh I can do it thank you' come out of my mouth I then glance down at my hand look at her and laugh and change my answer to 'thank you I will need some help'. 

Yep...asking for and accepting help does not come naturally for me.  

Mum comes in and is happy to see that I am still in no pain. I decide I want to have a shower before we begin the drive home. The nurse comes in and wraps my hand up in a plastic sleeve and I am given clear instructions by Mum to yell out if I need help. My first one handed shower was successful...get changed was a little harder and something I could not quiet do by myself.  

Before I knew it I had been discharged and was sitting in the car about to travel home and it was only 9.30am! I tell myself to enjoy the feeling of my hand not hurting because as the hours ticked away I knew I was getting closer to it wearing off. I just hoped we could get most of the way home. 

We got two hours into our drive when I could feel my hand start to become achy and throbbing. It was time to get some painkillers on board. Codeine did the trick and then I slept a lot of the way home. 

It was so nice to finally snuggle up in my own bed and be back in my home environment. Now the real healing and recovery can begin. I take immense comfort in knowing I am surrounded by the most amazing amount of love, care and support. 

Turns out I can type quiet well with seven fingers but I will end this post here and my next blog post will continue on with my recovery and explain more in depth what the surgeon did to my fingers...I have just realised that might have not even been explained. I found out specifically what the surgeon did once I got sent my discharge summary so I will include all those details next time. 

Finally I want to thank everyone who sent me messages, prayed for me, thought of me and who were there for me. Surgery is a scary process even when you have done it before but having an incredible support team can truly make all the difference. Thank you! Thank you! Thank you! 

Recovery and Healing

" Healing comes in waves and maybe today the wave hits the rocks,

and that's okay,

that's okay, darling

you are still healing

you are still healing."

- Ijeoma Umebinyuo, be gentle with yourself  

The 'acute unwell phase' of this infection is beginning to dissipate ... I am so thankful for that!

Unfortunately the next phase of recovery proves to be just as challenging. 

I wish that as I walked out of those hospital doors I would return back to my base line however I know that is not the case. I have a long way to go to get to where I was and that is daunting to say the least. 

I decided to keep a journal of my recovery so far; its raw and its real in places but hey it is my reality at the moment. I want this space and this blog to remain authentic and honour my journey so here we go....

Wednesday 11th January 

I was so thankful to be allowed out on leave today only having to return at 8 pm for my IV antibiotics. There was a sense of feeling like I have survived the 'worst part' mixed with a feeling of dread as I still have a huge mountain to climb. I still feel like I am in survival mode; I feel numb emotionally at the moment. My body is my main priority there is no room for emotions.

All I must do is survive; focus on one breath at a time. Swallow endless amount of pills; control my pain, control my nausea, try to eat, sleep and survive.  

Before I left hospital my IV line was changed as it has begun to not flush properly and was getting sore. I was let out mid afternoon and went back to Mum and Dads. That evening we were having dinner with my family from Perth before they flew home in the morning. All I could think of was how lucky I was to be there to spend that precious time with them. After some sad goodbyes I was taken back to the ward for my IV's. The antibiotics run for about 30 minutes followed by a 10 minute flush. I then have to wait 30 minutes and have a blood test as this is a really strong antibiotic. The doctors need to constantly monitor my kidneys to ensure they are giving me the right dose and that we are not harming them in the process. I leave feeling exhausted but also relieved to be heading home to my own bed. 

Finally I have to say goodbye to Mum and Dad as they are reluctantly heading away for a week. I am glad that we have convinced them to go because we all know they desperately need the break. I get to go and stay with my wonderful Nanna who is going to keep a close eye on me.

I just can't wait crawl into bed now!! 

Thursday 12th January 

It was so nice to sleep in my own bed with Dan next to me last night. It is always the small simple things that you miss. I slept pretty well till about 5am again when I was woken up with a really sore, unhappy tummy thanks to the IV antibiotics (was told to expect that!). I drifted in and out of sleep but was conscious that I had to be up at 7am to go for yet another blood test to check my kidneys.

Lying in a hospital bed gives you a false sense of 'wellness' because as I got up and attempted to get myself ready I realised how terrible I still felt. I was weak, shaky and clamy and that was all from trying to put some clothes on. I gave myself a little pep talk 'one blood test Liv you can do that!'  

I got myself to the lab probably resembling a character from The Walking Dead. My blood was taken and I immediately went back home to bed. 

Dan left for work and I somehow managed a shower which then put me back in bed feeling absolutely exhausted. Getting changed was hard; forcing myself to eat was hard and I was already feeling anxious about being home by myself so it was time to go to Nanna's. I was greeted by a warm comforting hug and knew exactly that's where I needed to be to begin to heal. 

The afternoon consisted of more sleep and a lovely visit from Sue. It was nice to be updated on the outside world and to forget about feeling horrible for an hour or so. Nanna of course managed to get my first proper meal into me for a few days and then before we knew it it was time to return to the ward. Again everything went smoothly and in just over an hour we were heading home.

By now I am physically and emotionally exhausted! 

Friday 13th January 

It has been another early start as we have to up at the hospital by 8am so that doctors can see me on their ward rounds. I have no energy to shower so just put on my clothes, half fall asleep into my rice bubbles, and collapse into the car to be driven back to the hospital. I get the all clear to be discharged after my last IV antibiotic tonight! Infection wise I am doing good my kidney doesn't hurt anymore and that sick feeling is disappearing. We just know that I have a long way to go to build my strength back up. This is a nasty infection even for a healthy body to fight so of course with everything else thrown in the mix its going to take me a lot longer. 

Together with my rheumatologist we make the call to stop Methotrexate for a number of reasons but mainly because I have seen no improvement in my health. At this stage the risks out weigh the benefits. I'm not prepared to put something into my body that is doing more harm than good. We also put the pieces together of this nasty infection and being immune suppressed from the Methotrexate which is another reason I have decided to stop it. So now I stop and just pray my body is okay without it! 

I get the good news that my kidney ultrasound was clear and everything looks fine there. I am given a script for 5 days worth of oral antibiotics and an anti nausea medication then free to go. We work out that this marks my 5th antibiotic I've now been prescribed in order to try and kick this infection! 

By now everything is beginning to catch up with me and I struggle to even keep my eyes open. I spent more of today asleep than awake. I know what it's like to feel fatigued but this is a whole new level! I am so grateful that I can just rest and sleep and Nanna so gracefully tends to my every need. Cooking me dinner, washing our clothes, wrapping me in blankets on the couch, checking I have had all my medication etc. I feel so safe and comfortable in her presence. 

I am exactly where I need to be. 

Understandably I have been worried about my job as I have missed a lot of time due to my health but I get a reassuring text that my 12 hours a week are safe and that I am to take all of next week off to recover. Again something else to be extremely thankful for.  

Before long it is time to head up for my final IV! By now we know the process so well. Again time goes quickly and before we know it I am complete. It is the best feeling getting my discharge papers and my cannula taken out. My lovely nurse gives us both a hug and wishes me all the best. 

I head home for a shower to wash away the hospital get into my pjs and Nanna cuts of my hospital band in celebration! It is time to close that chapter! 

Saturday 14th January 

Today the next phase begins...recovery and healing both physically and mentally. I feel like I am in that weird stage of not being acutely unwell but not yet feeling like myself. I think that's what is throwing me today I don't feel like myself. I feel like a shadow of myself. Somewhere tucked under the bone crushing fatigue I am there trying to claw my way back. Emphasis on the word trying!!

Today my brain is processing the week. It's finally sinking in. I think that now I am physically out of danger it is now my minds turn to process what has happened. Today when I close my eyes I am taken back to that ED room. I can vividly remember the pain and the look of distress on Dan and Dad's faces. I can hear my pleads to make the pain stop. I see myself whimpering on the bed. I feel the blood pressure cuff on my arm and my blood being taken. 

Trauma, pain, distress and fear! 

Today it is all hitting me. 

The bruises on my arms from blown veins serve as a constant reminder of the pain I've endured. I can't escape. I open my eyes I see the bruises and my body that struggles to function. I close my eyes and I am taken back to the hospital. 

Today it feels suffocating! 

Today I spent most of the day in my pjs on the couch and in bed. I managed to shower around 3pm only being able to stand for a little while before surrendering to the fatigue and sitting down on the shower floor letting the warm water wash over my achy body. 

I knew this day would come. It always does and it will probably feel like this for a little while. I know it's part of the process and that things will get better but right now I feel consumed. 

Today I am over it! I just a want to feel like me again! I miss myself! I miss Livvy. 

Sunday 15th and Monday 16th January

These two days just merged into one; one big haze of sleep and sleep and more sleep. 

There's nothing much to write. I wake up; get some breakfast into me; sit on the couch for a little while; surrender to the fatigue and go back to bed; get back up for lunch; go back to sleep; manage a shower; more sleep; dinner; another rest then sleep. 

I cannot believe how bone crushing this fatigue is. It is taking everything out of me. Simple once easy tasks now feel near impossible. I've only left the house to go for my trips back to the hospital. 

This fight is so hard! I told Dan I just feel like I've got nothing left..I have been fighting so hard that there is nothing left. He wraps me in his arms and tells me he won't let me fall, that he's got me and we are going to get through this. 

My beautiful friend has some words of wisdom when she told me that maybe the best thing for me to do right now is not to fight. To let things be, and that when we let go our bodies and minds know what to do. My reply was that I am so programmed to fighting that I think my problem is that I don't know how to let go. Honestly I think I'm scared to let go and trust my body. I'm afraid of how frail and weary my body is and how mentally exhausted I am too. I just don't have any room to slip. Right now I just don't feel safe inside of my body. 

This was her reply:

Letting go is not slipping darling xox it's not giving in or giving up. 

It's accepting we can't control some things and trusting the process of healing and trusting in something bigger than ourselves. I can only imagine how exhausted you are both mentally and physically and that's why I think you need to let go; to let go of putting any pressure on yourself to be positive and any other things that are weighing you down and just be. Just float. Because all this fighting is perhaps doing the opposite of what u want it to just now. And you WILL come out the other side. You will I have no doubt of that xoxox 

Even though I am struggling so much inside this body of mine I take huge comfort and peace knowing I am surrounded by indescribable amounts of love and support. Right now I take shelter in their loving arms and with their kind words. I can heal through their love. 

Thursday 19th January

On Tuesday Dan and I came back to our place. Dan had the next two days off work so was able to be home with me. We cannot thank Nanna enough for her gentle nurturing care over the last 5 nights. She is our wonder woman and we will forever be grateful for everything she did for us. 

Being home in our own environment is another step in the right direction. It is another hurdle still learning what my limits are. At home there is more to do and while I was home today and the dishes built up they began to annoy me. Dan had cleaned the kitchen and put the dishwasher on before work and I didn't want him to come home to a mess. This was easier said than done. Unloading the dishwasher took three trips to the couch to recover in between plates, cups and utensils. Another half an hour then I began to stack the dishwasher. This then left me shaky and dizzy so I surrendered to the couch. Half of me feeling accomplished the other half feeling frustrated! 

Yesterday I drove Dan to the supermarket so he could run in and do a big shop for us. Even driving to the supermarket was enough to completely wear me out. I had to have a sneaky sleep in the car while Dan went shopping then spent the afternoon in bed trying to recover. 

I am no where near where I want to be but I have had one word replaying over and over in my head today...patience! I must be patient and trust in the timing of my healing. Yes, I get frustrated and angry heck I cried in the shower this morning because I am so over feeling miserable but I am letting myself feel these feeling instead of resisting and blocking them. 

I get texts saying 'you'll be better soon' 'you'll be okay' and I know I will be; I always feel better and I will be okay but right in this moment I don't feel okay, and maybe that is okay as well. My body and mind have been through a lot. It hasn't just been this infection I don't think I even got a chance to recover from my hip procedure and all the pain I endured prior to that. There has been no break or respite for me in a very long time. 

My healing now lies within ensuring my mind has the space to process everything. My body is still recovering. Physically and mentally my energy levels have reached an all time low but perhaps there is healing in that as well. 

I need to learn to be okay again. I need to learn to trust again. I need to learn to live again. 

Here's hoping it won't be long until I have a much happier ,positive update but until then I will be sleeping, resting and healing my body, mind and soul. 

One moment and one breath at a time.