Friday, August 3, 2018

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.......