Thursday, January 19, 2017

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. 

Wednesday, January 11, 2017

Hospital happenings

It is currently 5.30am on Tuesday the 11th. I was awoken at 4.15am and promptly buzzed my nurse for more pain and anti-nausea medication. I have my blood pressure, pulse and temperature checked for what feels like the 100th time. The dim lights have been turned off so the light streams through my curtain. The other patients are starting to stir and I can hear the nurses swiftly walking up and down the hallways checking on other patients. Thankfully I am on the quiet side. 

I decide to put Spotify on random and listen to some music to block out the noise and in the hope to drift back to sleep. The first song that ironically that comes on is Coldplays 'Fix you' - 'when tears stream down your face; i will try to fix you'. 

The last twenty four hours doctors, nurses, my family and friends have all been trying to fix me. Whether it is in the form of medication, blood tests, IV drips, hand holding, distractions, encouraging words and texts, hugs and kisses. 

So let's start at the beginning. I guess you have worked out that currently I have been admitted to the medical ward in the hospital. Like usual, their is a story, the lead up to where I am now so here we go....

About two weeks ago I was feeling off and I couldn't quite pick up what it was. My joints hurt (normal) I was sleeping a lot more (nothing too unusual) and I kept feeling clamy and feverish (not so normal). On Tuesday the 3rd all day I was clamy and became pretty unwell. Then on Wednesday morning around 5am I woke up in severe pain in my left side which reduced me to tears. Dan put the shower on and I sat under there for about an hour trying to gain relief but I knew this pain was different. Still a sobbing mess I rang mum around 7am who decided to come and get me to take me to ED. It was that awkward time that I couldn't quiet wait to be seen by my GP. We didn't wait too long and after peeing into a cup it was ruled I had a bladder infection which had travelled up to my kidney. I was diagnosed with Pyelonephritis so was given morphine and antibiotics and discharged. We naively thought that would be it. 

Over the week i didn't improve very much even with the antibiotics. On Friday I saw my GP who stated 'you still do not look very good'. 'I don't feel good' was my reply. We decided to switch my antibiotics again in the hope to kick this infection. 

As much as I willed myself that I was feeling better and that the antibiotics were working I did know I was still feeling very unwell. However I was not quiet expecting what has happened to happen next....

On Monday I pushed myself to work...maybe if I got there I could take my mind of everything? Again I was greeted by you don't look well! I was fooling no one. All day I felt naseuous, had a whopping headache and my body ached. Every now and again I would either be cold or boiling hot. After work I went and celebrated my cousins birthday with the family. Put on my brave face again fooling no one. My nausea was increasing and I grew pale (or paler should we say). 

Dan and I picked up some takeaways on the way home and several times I felt like I was going be sick. The downfall was just beinging. I managed a bite of dinner but couldn't stomach anything else. Dan suggested I go get into bed and lie down so tucked me in leaving a bowl next to me. Sleep didn't come but before I knew it I couldn't stop being sick. I grew so weak and shaky. My joints felt like they had battery acid running through them ( I was in trouble!). After about my eighth time being sick Dan said he was taking me to the hospital. In true Liv style (yes I know I'm stubborn) I said all I wanted to do was go sleep but if I was sick one more time I would go in. I tried so so hard not to be, surely I was done? Well we all know what happens. Dan bundled me up and drove me to ED then put me in a wheel chair because by this time I could barely stand. We arrived around 11.30. The waiting room was quiet. I was distressed my pain was very out of control. Next thing dad arrived to be there as well. 

Once I got my room in ED a cannula was promptly inserted and bloods were taken.  Of course it was still my infection raging a war in my body. I couldn't stop shaking from the pain. 

This is was the night i pulled my 9 card on the pain scale! 

I was in absolutely agony. It's only now i realise how extremely distressing it was for Dan and Dad to see me like that. I kept apologizing to them I felt so bad but couldn't be more thankful to have them there to comfort me. 

I was started on IV morphine, fluids, paracetamol and antibiotics. Plus more morphine, more morphine and more morphine. Severe pain and severe nausea don't make for a very happy Livvy. I still don't think I have processed how unwell I  was. Dad whispered in my ear you don't need to be brave this time hunny. 

I was seen by a junior doctor who due to my complicated medical history and the state of me said I needed to be seen by the medical registrar so the wait began. The hours slowly ticked by. Dan and Dad went between trying to sleep in the hard chairs, reading trashy 1990 magazines and walking around the ward. 

The Registrar came and did an in depth  assessment on me. After his assessment and the results of my bloods it was decided I was to be admitted for IV antibiotics and pain and nausea management. 

By this stage again my nausea became uncontrollable and my blood pressure was scarily low. The doctors had to have a meeting to rearrange the beds so I could be in an isolation room for my own safety due to my low immunity. 

I was transferred up finally around 9.30am a whole 8 hours after we arrived. I was so thankful for my own room! I was still feeling gravely unwell with crippling nausea and a scarily low blood pressure. I was seen by the medical team. They were wonderful and talked me through what was going to happen. Plus my nurse was just the sweetest! It is such a comfort when you are so unwell. 

Mum came up to be with me and assisted me in showering to see if that would help freshen me up. I felt so dizzy and shaky I had to use the shower chair and mums help. Even at twenty six I needed Mums help to shower me! 

After getting changed I lay in bed willing myself not to be sick. My daily medications had just arrived and if I could only achieve one thing that day it was to hold down those beauties. I lay on my back taking deep breaths being so careful not to move. Thankfully I can say that they stayed and that was a huge step in the right direction (it perhaps could have been the increase dose of prednisone). 

After a rest mum even managed to convince me to try some soup for lunch. She told me it was chicken soup which I love so I gladly decided to try it. I thought it tasted so delicious then out of the corner of my eye I saw 'creamy mushroom soup!' My sneaky Mum knows I don't like mushroom soup and would have even touched it so she told a little white lie. Soup really helped (even if it was mushroom!)

Then over the afternoon as I napped I had Dan come and visit me; then Dad, Joe and Rhi and finally Mum came and sat with me while I had my antibiotic. My spark was slowly coming back. 

At 8pm I began my anti-biotic Gentamicin. Before that I had had fluids running for 10 hours!!  Mum said goodnight and I settled down for the night. Thankfully sleep came easily. 

The next morning I managed some breakfast and generally did feel a lot better than I had. Dan came up and sat with me as we waited for the medical team. It was decided that I could go on 'leave' and return to the ward till Friday at 8pm for my IV antibiotics. I was so thankful to be allowed to head home to recover both physically and mentally. 

I think I'm still in survival mode and haven't properly processed what an ordeal this has been. I am still very unwell and know it will take a while to come back from this. I just had a shower and have been recovering back in bed for over an hour! It's going to be hard but I can do this; somehow I always do.

Thank you to everyone who has texted or messaged me and for all your prayers and get well wishes. Special thank you to my family who once again have been my pillar of strength and comforted me through some dark days. Blessed is an understatement I couldn't do this without them. 

So in the words of Chris Martin:

'Lights will guide you home 

And ignite your bones 

And I will try to fix you.'