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.......

Hold on to me

Hold, hold on, hold onto me

'Cause I'm a little unsteady

A little unsteady 

Written: 19/07/16

How much physical pain can one person handle? How much is too much? When does the brain decided to open up the flood gates and let out all that pain bottled up inside? How do you stop once you start? Why won’t this stop! I am so tired, I am so tired! Please pain stop!

My undoing was a glass of wine…
Or was it last night’s sleepless night due to unrelenting rib cage pain, that caused every breath to be excruciating? 
Or was it that the only relief I could gain from unbearable bone pain was morphine?
Or was it that I have been swallowed by this nasty flare for over three months?
Or was it simply that I had finally reached my limit?

I think deep down I knew these feelings were coming. How long can I survive physical pain before the emotional pain catches up to me? 

I am a bottler, I know this. From an early age I have had the mentality that this is my reality lets just deal with it. Lets look on the the bright side, be optimistic and everything will be okay. A lot of the time this does serve me well. I wouldn't survive without this positive outlook. My problem is I bottle for too long sometimes. I keep it all held inside and then become scared to let it out because my fear is maybe it wont stop. I bottle to protect myself and I bottle to protect those around me. Tonight the lid released...and the contents poured down my cheeks. 

I sit here tired….I sit here absolutely shattered. My soul is exhausted, my body is drained and my mind is numb. The only thoughts I can form over and over is ‘I am tired, I am tired I am so very tired’. It’s the kind of bone crushing fatigue that no amount of sleep will fix. The type of fatigue that even when I am lying down I feel like my body is going to collapse from under me. The type of fatigue where talking becomes a mammoth task and sometimes even breathing feels too exhausting. I wish I was just ‘tired’ but in reality it is so much more than that five letter word.

Tonight I sat in my quiet house and I finally let myself cry…I let myself sob. Cry out the physical pain, cry out the frustration, cry out the limitations and restrictions, cry out the life that I feel that I am missing out on. Just cry because I simply feel sad. I love my life don’t get me wrong I have so many blessings but right now it is just so damn hard. Pain is so cruel and overpowering.

Tonight I give myself permission to feel these emotions, to admit that I am struggling and to allow myself to cry because reality is that it is really miserable to be in a body full of pain. I need to allow myself to feel these emotions instead of blocking them out. It doesn’t mean I am not coping and it doesn’t mean that they will never stop. 

It is okay to cry Liv you are not failing anyone. Let that guard down!

Tomorrow I will pick myself up and I will keep fighting because even though my pain is unrelenting right now I know deep down in my soul I am that little bit tougher; that little bit more stubborn. There will always be a part of me that is stronger than this pain, even if at times it is only a tiny particle.  
I can allow myself to fall apart but I must pick myself back up.

For now Liv just rest, close your eyes and rest. You have been so brave and just like all those times before you will be okay!

The INEVITABLE

"You will not always be strong, but you can always be brave." Beau Taplin 

I think we all knew deep down that it was only a matter of time. Only a matter of time before the harsh reality of living with lupus caught up with me. We knew I would crash after the wedding but I can tell you we were not prepared for this next chapter. Our vows in sickness were soon put to the ultimate test... 

I cannot be thankful enough that my lupus went quiet and for once and played the game. Best wedding present ever!! Thank you Lupus!  I'm not actually sure if you purposely went quiet or I outsmarted you with a high dose of steroids but anyway I'll take the win.

I walked down the aisle and married the man of my dreams. I wore heals, I danced and I truly was pain free. But trust me Lupus you wouldn't have ruined my day even if you did want to be there. 

Again we left you behind in New Zealand as we headed to Rarotonga for our honey moon. Five blissful nights in island paradise!! It was the most beautiful and the perfect start to married life. We were on top of the world! 

Lupus, you tracked me down towards the last few days but thanks to painkillers, an understanding husband and a few too many rums I kept you at a distance. I could feel you starting to creep back in. I was not ready! In my head I begged with you to wait let me have one more pain free day to just be free to live. My ankles began to ache, my bones throbbed and I began to need to sleep during the day...in the pit of my stomach I knew this was not a good sign. 

We knew you were coming and it was only a matter of time before you made your unwelcome appearance (yet again).  You took the sneaky opportunity of making your grand entrance once I began to taper down on my prednisone. Or was it once I stopped to finally relax back at home and settle into married life?...we will never know. 

I wasn't ready to have you back and as much as I fought it ultimately you did fight harder, you've always been good at that. You wear me down bit by bit. You take away my freedoms and the ability to make choices. I go into survival mode and you go into destruction mode and destruct me you did! You broke me! Days of uncontrollable pain took their toll on my body, mind and soul. It felt like I was being punished for all those days of being pain free. Like you were making up for lost time and now I was just your host. 

I finally broke on the 5th April (just fifteen days after returning home from our honeymoon) after a night of terrifying unrelenting pain that induced vomiting. I had nothing left! I remember ringing my poor mum in tears telling her I couldn't take it any more I simply could not do it. I needed help.  I was taken to my doctors office and by this stage dad had to push me in a wheel chair. I was one sick girl!! I no longer felt like me.  My doctor took one look at me and before I knew it I was in the Emergency Room then being admitted to hospital for pain relief and to be monitored. 

I cannot imagine how frightening it must have been for my parents and Dan. I remember mum physically having to hold me up to walk to the bathroom and being wheeled just down the hall for a chest X-ray because the pain was to unbearable and I was to weak to stand. 

Lupus you truly out did yourself I will give you that. Usually I would do everything in my power to be discharged and recover back home in my own bed but for the first time in my life when the doctor said he didn't feel comfortable sending me home I didn't try and bargain with him or plead to go home. I knew I was where I needed to be! 

Relief did come to me in the form of iv morphine though out the night. All I could do was lie there with my eyes closed and rest my weary body. I didn't fight you that night I didn't have anything left. I just let the morphine take effect and drift away. I had the most wonderful nurses who kept my pain under control through the night and would heat up heat packs to soothe my joints. 

The next morning my iv morphine was switched to tablet form and with the pain being under better control I was discharged in the afternoon. The next weeks were a haze of morphine induced sleepiness and a body still not able to function but I was thankful to at least be able to control these symptoms from the comfort of my own home. 

Oh how I look back now and wish that was all I was going to face....how badly I want to type and they lived happily ever after without Lupus THE END....but the next chapter was just beginning and all we could do was cling to each other and keep searching for our little pockets of joy!! 

Welcome to married life chronic illness edition!!! 

Pain in my hip!

"You've got what it takes but it will take everything you've got"

Pain...a simple four letter word, easy to say, easy to spell and that's about where my list of positive things end about the word. If you type the word 'Pain" into Google it revels 814,000,000 results in 0.18 seconds. People all around the world are searching for answers to explain their pain but most importantly answers on how to escape it and make it go away. I think we all fear pain on some level- it's uncomfortable, frightening, foreign for most people and makes us lose control. The good news is most pain is acute meaning that it will hurt and be painful but it will pass. Chronic pain on the other hand has settled in, made itself at home and for the foreseeable future isn't budging from your body.

Intense, exhausting, miserable, cruel, nauseating, burning, suffocating, distressing, excruciating pain!

These are the words I would use to explain my left hip which has been an on going issue for a year and a half. It's the kind of pain every cell in your body screams out to. Every part of you desperately wants to escape from. It's a pain that has become way too familiar and frequent for my liking.

Things took a bad turn in March 2013 when after a lupus flare my pain became localised in my left hip. It was as if all the pain in my body suddenly went to this one area. I've lived with pain but never experienced pain this severe before in a joint. My rheumatologist sent me for an MRI to rule out Avascular Necrosis . A clear MRI came back leaving us with no answers. Which brings with it the self doubt - is this pain all in my head? There's nothing on the scan it must be fine? Why did nothing show?? My orthopedic surgeon decided to try an intraarticular cortisone injection which involves using an xray machine to guide the injection into the hip joint. There were two reasons to try this method: firstly to gain pain relief but also to see if the hip joint was the cause of my pain and not another area like my back. Once the local anesthetic was injected into my joint I gained IMMEDIATE relief which was heavenly. Thankfully my steroid injection worked perfectly as well and I thought my days of being in agonising hip pain were over. They were for about six months... Slowly but surely the pain returned and so did the crutches and the loss of ability to do the things I used to be able to do. Codeine turned into Tramadol which then turned into Morphine as I tried desperately to get this pain under control.

In February this year it was decided another steroid injection was needed. Again everything went well. I got instant relief from the local anesthetic and after a few days the cortisone started to kick in. By April the pain had returned! Like before I had started rebuilding my life and gaining independence again then it was all ripped away. That's where those silent tears at night come in. Please make it go again, please make it stop, I'm so tired of fighting this pain, please just leave me alone.

Lovely big needle in my hip during my second cortisone injection

Currently my medical teams are at a loss of what to do to treat me. My MRI's aren't showing anything conclusive. My scan is clear but my ability to function and live like a twenty three year old are completely irregular. I am getting by on a large dose of morphine mixed with stubbornness and perseverance. I refuse to let this be my long term future. Yesterday I got in a warm therapy pool and was able to walk freely which was the most heavenly experience. Water has always been a source of comfort and freedom for me. My heart ached when I had to get out and reach for my crutches and instantly the pain returned as weight was put through my hip. I wish I had fins! I wish I was a mermaid!

So now when my pain gets excruciating and I feel like I am going to be stuck like this forever I close my eyes and imagine myself walking pain free in the pool and think one day I will do this on land and I will cherish every beautiful step.