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. 

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