Recuperating Phase

" Maybe it's not supposed to be easy for you.

Maybe you're one of the rare few who can handle tough times and still be a loving person.

Maybe it's going how it's going because you're built for it...

Don't stress a thing.

It's going to work out because you're not going to stop putting the work in."

Rob Hill Sr 

Here I am again…It is currently a ridiculous hour of the morning and instead of continuing to toss and turn in bed while being extremely mindful that Dan has to get up at 5am, I have surrendered out to the lounge to find solace in pouring my meandering thoughts from my brain onto my intensely bright laptop screen. For a welcome change I currently can’t sleep thanks to being ‘normal’ person sick; the common cold has made itself welcome in my stupidly immune suppressed body. During the day I start to congratulate my body on fighting off the cold but by night time I find myself praying that my blocked sinuses, throbbing ear, scratchy throat and wheezy chest are not the beginning of dreaded infections. Can you tell by now being chronically unwell results in you becoming chronically paranoid? It becomes one big confusing mess of which symptoms can I ignore or which do warrant my attention and even after 23 years I still don’t have it worked out yet.

Life since I last blogged life has been…ummm…I have sat here trying to find the right phrase to describe it for about 5 minutes and all that comes to mind is a bit shit all over the place let’s say. Circumstances have changed quite suddenly and it’s been bittersweet in many ways. About two weeks ago I was told that contracts at work have changed resulting in my hours needing to be transferred to another social worker. I knew my job would come to an end sooner rather than later but I guess I was just not quite expecting it to be that soon. Yes I cried as my manager broke the news to me, I quietly blubbered as I packed up my desk and before I knew it I was at Mum’s work embraced in her arms because even when you are 26 when things go wrong nothing beats your mum’s arms wrapped around you. I was truly gutted because I LOVED my job there. The saving grace for me looking back now is that I could walk out of there with my head held high. I know I gave that job my absolute all. I take comfort in knowing that I have no doubt in my mind that I should have tried harder because I know perhaps my downfall was I pushed my own boundaries too hard at times…Que the time I was in so much pain after meeting with a client I threw up but then soldiered on visiting another client resulting in gracefully (hopefully) cutting the visit short so I could rush back and be sick again…I am so glamourous I know!

My work place had been nothing but supportive and nurturing in regards to my health challenges. I was blessed to work with such gracious individuals which trust me is harder to find than you think. While I was a student on placement I well and truly learnt this lesson. At a certain agency I was the ‘sick’ person; the one who was unpredictable and at times unreliable, who wasn’t quite as fast as her peers and who always seemed to need time off work for doctors’ appointments. I wasn’t seen as an individual who was capable, who was mature beyond her years, who had immense empathy for her clients and who was always willing to learn. However at my work place I was well and truly ‘seen’ as that person! Sure my health got in the way and did interfere with my ability to do my job BUT those other qualities shone brighter.

I think I have now officially broken the news to those close to me…the awkward conversations of loved ones asking me  how my job was going with me explaining what has happened which was usually met with ‘oh you loved that job’…yes, yes I did. I must confess I went to a BBQ last week and had in-depth conversations with people about my ‘job’ because I am not quite that ready to pull out the ‘unemployed’ card just yet.

I must say that over the last two weeks my health has steadily begun to improve (yay!). This has left me thinking about how productive I could have been at work but then remembering that I have been able to sleep in and have been doing nothing but caring and listening to my body which is why I probably feel a bit better. I have had time and space to let my body rest instead of this crazy pattern of push then crash, then push then crash. Maybe this was God’s not so subtle way of saying ‘liv you need to focus on regaining your health again’. I think he was trying to give me hints all along (que a hospital admission) however I was too stubborn to take notice. As much as I don’t want to ‘focus’ on my health because at times it just feels like a whiny, needy, brat I think that in order for me to get stronger, gain stability and take back control I NEED to.  I still have plans, I have dreams of my ideal job and if anything this has made me more motivated to start putting into action these plans. For now I take comfort in knowing that I don’t have to continually focus on pushing myself and for the first time in a while I can solely focus on getting myself back to my baseline and even above that!

 My motto currently is RECOVER, REST and REPEAT.  

Unpredictability

'She felt very young; at the same time unspeakably aged'

 - Virginia Woolf

There is a split second as I transition from being sleep to waking up where I can usually tell what my day is going to be like. 

Same days as soon as I open my eyes I am overcome by pain. 

Those are the days I long to slip back to sleep to escape again. 

Other days I wake up and my first thought is 'thank you body'. 

These are the days when I do not have to automatically reach over to my bottle of codeine;
a day where I have a little more room to breathe;
where I may be productive.

Everyday in that split second I am welcomed by pain it just depends to what degree.

You learn to adapt but you never truly get used to it. 

There are days when I wake up and in that split second before I am fully present in my body 

I can forget about the pain.

 Blissfully unaware of what I am going to face. 

It is heavenly and cruel at the same time.

 It's like a tiny glimpse of being in a healthy body then suddenly it is whisked away 

in a matter of second. 

In my dreams I run, I have endless energy, I feel no pain, 

I am free and then I wake up 

and find myself in a cruel nightmare that I cannot wake up from.

If I had to describe my health at the moment I would use the word 'unpredictable'. One day I struggle; the next I have more energy; the next my pain is really severe; the next I start to feel like my old self again and then I am bed ridden again and all that can happen in one day. It's an exhausting place to be mentally to say the least. I don't know when I open my eyes what I am going to face and things can change within a matter of minutes which leaves me feeling really unsettled and anxious.

Three weeks ago I had an AMAZING week for the first time since I got this nasty infection. I was able to go to work three days! I thought finally I might be seeing a light at the end of the tunnel! Everyone noticed a difference in me but I was cautiously optimistic; I didn't want to jinx myself. Bring on Monday and another working week and I wake up to severe pain that made me physically sick and just like that I was brought down back to earth with a thud! I lay in bed begging the morphine to kick in and take away some of my pain. I switched back to survival mode and became quite despondent. Why? Why let me feel better then put me back here so quickly? Then by Friday I was starting to feel a lot better...see what I mean now!

To my amazement last week I was able to work my full 12 hours! Twelve glorious hours of feeling purposeful and fulfilled. For once my body was playing the game. I was so proud of myself because I knew how hard I worked to get there. If you know me by now and the nature of my illness there is always a but...by the weekend it became clear that my body had been pushed to it's limits and was not impressed with me. The weekend was spent sleeping, resting, recovering in an attempt to gain some sort of wellness for Monday. Monday came and I gave myself a little pep talk ' you can do this!' On went my brave faced as I endeavoured to hide my pain and discomfort. I struggled to focus...a mix of overwhelming pain and fogginess from the pain killers clouded my brain. I am there in person but my mind is else where. I am consumed by the battle being fought in my body. I sit there and day dream about what it must be like not be to in pain...I want to scream do you know how lucky you are that you have a body that isn't attacking itself? I ache with jealously as everyone walks around so effortlessly...do they treasure those precious steps? As fate has it as soon as I write that sentence a group of women run past my dining room window...thanks world!

I 'survived' at work until lunchtime and by the time I got into my car I burst into tears; tears of pain, frustration and tears of sadness. Everything just became hard again. Pain gets stronger, I feel weaker! I came home took some pain medication and sank into my bed. The last few days not a lot has changed. My pain is still flaring and my soul is exhausted. I am longing for those good days to come back or at the moment i'll take a little less pain,..pretty please.

I've had a few specialist appointments lately. I saw my Rheumatologist and we've hit a bit of a bump in the road again with treatment plans and what to do. My case is complicated as over the years I have reacted or found no relief from many medications. The hard thing with Lupus is that medications prescribed are used in other conditions such as Rheumatoid Arthritis,Cancer and in organ transplant patients to prevent rejection. So this leaves us in a trial and error situation. It is daunting looking at my long list of failed medications. The only medication that has ever really helped is Prednisone..again which is far from ideal. We discuss the possibility of a medication called Rituxan as a future possibility. It would not be an easy medication to get at this stage but when the time comes we will cross that bridge. We decided that for now to leave this medication as our 'safety net' which for me is reassuring to know we have an option when the time comes. For now I wanted a rest away from these nasty medication and their frightening side effects. I am so tired of putting these toxic drugs in my body when there is no way to guarantee they will help me anyway. We talked about my extreme fatigue and he stated how that is the hardest symptom to treat. There is no medication to magically take away the fatigue. So like many things I just have to ride it out....He did introduce a new medication called Nortriptyline which I take at night to help me sleep and help with my pain. It does seem to be working a treat so I am thankful for that.

Next on the list was an appointment with my Ophthalmologist to check my eyes. I had begin to notice my eyes felt cloudy and reading was becoming more difficult. As Plaquenil has given me early stage retinal toxicity I immediately made an appointment to see him. Of course this has resulted in more tests being ordered so we can hopefully identify the culprit...I am hoping I just need my prescription in my glasses changed and no further damage has occurred.

Finally I had an appointment with the Oral Surgeon to see about getting a new retainer made for my jaw. I am finding due to my high pain levels lately my jaw has decided to pop in and join the pain party. We think majority of the pain is coming from me clenching my jaw as a result of the pain and grinding my teeth at night. Yet another appointment was made to come back in and get my impressions made for my splint.

Then to wrap it all up I had a letter from my GP asking me to go to MedLab to get bloods taken so she can just check my levels again. I texted Dan from MedLab saying 'I feel like looking after my health is a full time job!'. The more I think about it the more it is true. Living with a chronic illness IS a full time job. Except for the very obvious difference that you don't get paid, you don't get time off, there is no holiday leave and you cant just hand in your resignation when you have had enough. Twenty four hours a day, seven days a week, 23 years living with Lupus has been my full time job.

I always want to bring you a cheery, happy blog post as recently they have understandably been difficult reads. I know it breaks my family and friends hearts to read about this pain and a big part of me feels guilty for that. I just feel that there is healing in me being able to write down my experiences. I struggle to talk about this pain to people...my automatic response is usually 'I'm okay'. I can't sugar coat this though the reality is living with this illness is hard, emotional and raw. I've said it before and I feel like I need to say it again. I don't want you to feel sorry for me or pity me. I strive so hard every day not to let Lupus rule my life. Maybe if anything I just want you to really treasure your gifts you have and don't take a single step for granted. I just want to thank you all from the bottom on my heart for all your kind and support comments. These are the little gems that I hold on to when things are tough.

I guess the beauty is that there is always still hope; hope that tomorrow I will wake up and the pain will be less; hope that this flare will burn itself out quickly; and hope that soon things will be looking up again. That's the nature of this illness you never know what is going to happen. I am extremely thankful that I have had some good days though. It is encouraging that my body still does remember how to have them. For once I am going to be greedy and ask for some more!

 I've got a beautiful life that I want to fulfill and live preferably without this pain!

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. 

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.' 

The unwelcome guest

'Because sometimes that's what has to be done. 

You have to lay down with it. The hurt. Or the heartache or even the hate.

 Whatever is inside. Sometimes you have to get close to it. 

Taste it and understand it so you can define it, before it defines you.' 

JmStorm

I sense you, 

I feel you,

I know that you are constantly there. 

I am the antelope, you are the lion...hunting..stalking...preying.

Some days you are in the shadows waiting for your opportunity to strike.

Some days you seep into my joints and bones causing agonizing pain.

Some days you zap all my precious energy leaving me struggling to function.

Some days you leave me shaky, feverish and nauseous. 

Some days you decide to cause havoc with my heart rate.

Some days you engulf and swallow up my whole being. 

You are always there.

Waiting,,,, 

Waiting to attack, pouch and suffocate. 

Taunting me. 

My unwanted companion at 4am when I cant sleep due to severe pain.

My unwanted companion that takes away opportunities, choices, freedoms and my independence. 

My every move is calculated because of you.

Will walking too far upset you?

Will staying up an hour later offend you?

Will socialising cause you to become aggravated?

You make me question my every move filling me with anxiety.

Will I upset the balance?

Is it my fault?

Quite frankly you are powerful, controlling and terrifying all at the same time. 

For some reason though our paths have been aligned and as unwelcome as you are 

I know you are there.

I acknowledge you and respect your power because the reality is in a mixed up kind of way you think you are protecting me. 

You think you are helping me.

Do you know what though..truth be told I think you are confused.

Confused what your role is, what your job is. 

My body is not the enemy, I am not the enemy.

I am not your prey!

I promise you I can protect myself.

I do not need your constant suffocating grip.

I can do this without you. 

I can be whole without you.

I can be enough without you.

I can be ME without you.

I can survive without you if you just gave me the chance!

Hippy, Hoppy Christmas!

On the first day of Christmas my left hip gave to me:

one visit to the surgeon.

On the second day of Christmas my left hip gave to me: 

two diamante crutches, one visit to the surgeon.

On the third day of Christmas my left hip gave to me: 

three minute wheat bags, two diamante crutches, one visit to the surgeon. 

On the fourth day of Christmas my left hip gave to me: 

four hourly pain medication, three minute wheat bags, 

two diamante crutches, one visit to the surgeon. 

On the fifth day of Christmas my left hip gave to me: 

fifty moans and groans, four hourly pain medication, three minute wheat bags, 

two diamante crutches, one visit to the surgeon. 

On the sixth day of Christmas my left hip gave to me: 

six staring people, fifty moans and groans, four hourly pain medication, 

three minute wheat bags, two diamante crutches, one visit to the surgeon. 

On the seventh day of Christmas my left hip gave to me: 

seven sleepless nights, six staring people, fifty moans and groans,

 four hourly pain medication, three minute wheat bags,

 two diamante crutches, one visit to the surgeon. 

On the eighth day of Christmas my left hip gave to me: 

eight suggested 'remedies', seven sleepless nights, six staring people, 

fifty moans and groans, four hourly pain medication, three minute wheat bags,

 two diamante crutches, one visit to the surgeon.

On the ninth day of Christmas my left hip gave to me: 

nine Netflix movies,eight suggested 'remedies', seven sleepless nights,

 six staring people, fifty moans and groans, four hourly pain medication, 

three minute wheat bags, two diamante crutches, one visit to the surgeon. 

On the tenth day of Christmas my left hip gave to me:

 ten multiplied by ten silent tears, nine Netflix movies eight suggested 'remedies',

 seven sleepless nights, six staring people, fifty moans and groans, 

four hourly pain medication, three minute wheat bags, 

two diamante crutches, one visit to the surgeon.

On the eleventh of Christmas my left hip gave to me:

 eleven minutes to put my socks on, ten multiplied by ten silent tears, 

nine Netflix movies, eight suggested 'remedies', seven sleepless nights, 

six staring people, fifty moans and groans, four hourly pain medication, 

three minute wheat bags, two diamante crutches, one visit to the surgeon. 

On the twelfth day of Christmas my left hip gave to me:

 twelve deep breaths, eleven minutes to put my socks on, 

ten multiplied by ten silent tears, nine Netflix movies,

 eight suggested 'remedies', seven sleepless nights, 

six staring people, fifty moans and groans,

 four hourly pain medication, three minute wheat bags,
two diamante crutches, one visit to the surgeon!!!

AND THE BEST PRESENT OF A CORTISONE INJECTION