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.......

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!

Life without Plaquenil

"She wears it so beautifully doesn't she, her pain...

Always smiling, always positive...always happy to help...

It's like a garment perfectly tailored to fit the way she carries it...

with a touch of grace...and the quietness of that sad smile...

All so you'd never know how heavy it really was." - Runata Suzuki 

Achy, stabbing, agonising, inflamed, painful, stiff, throbbing, miserable, nauseating, punishing, suffocating, torturous, draining, exhausting, terrifying, absolutely excruciating....
Welcome to my reality of living without Plaquenil!

Okay, I realised that coming off this medication wasn't going to be easy but potentially there was the chance (wishful thinking!) that my body would cope to some extent. I lived in hope (or blissful denial) that this would be the case but knew deep down already that there was no way I could be taken off a medication I had been on for twenty so years and expect no repercussions. 

I was informed that the drug would slowly filter out of my system over a month and to simply 'wait and see what happens'. I was started on a drug called Gabapentin to see if my pain was potentially nerve pain in which case this medication would help...unfortunately I have now weaned off it as it gave me no relief and there was no way I was going to take a medication if it wasn't doing me any good. 

Truthfully I don't think I was over the flare from the wedding and my body already felt distressed so timing was not on my side with stopping Plaquenil. It takes no genius to work out what happened...storm in a teacup or should we say in my body.

For me right now it feels like every day merged into severe pain and overwhelming fatigue. It's all one hazy fog of pain while still trying to cling desperately on to hope that I things would get better. The brutal truth was I wasn't living I was simply surviving...but heck I fought back every day again and again and again I would continue to fight with all my might. 

My days often and still often do look like this: 

• Wake up feeling like I haven't even slept (probably because I barely have). 
• Sit on the side of my bed and swallow some medication in an attempt to relieve the aches in my body. Some days I will wake up gasping as the pain is so severe.   
• Lie back down and wait for this medication to kick in before I can attempt to move. 
• On a good day I can walk to the shower by myself on a bad day Dan will physically have to help me get to the bathroom. 
• I will shower siting down and turn the heat up as hot as I can to try gain some relief.
• Now here comes some variation depending on how I am feeling I will either get changed and then go and recover on the couch or I will be back in bed needing a sleep.
• I will swallow more medication in an attempt to lower my pain, heart rate and disease activity (usually about ten tablets in one go). 
• I will then force myself to eat often feeling nauseous from the pain or fatigue. 
• If I made it to the couch I may read, watch TV or do some writing which will then require an afternoon sleep. 
• More pills to be swallowed!
• If Dan is working and I can muster up the energy I go up to Mum and Dads for dinner but mostly for company and to be distracted from the pain. Dad can often tell how I am just by looking in my eyes..they give it all away before my mouth opens to tell them that I am 'okay?!' which we all know is a lie but what else can you say...I'm sore, I'm tired day in and day out gets pretty overrated!!! 
• Some days I will eat dinner then need to to straight home but if I'm lucky I can get to watch some TV with mum.
• I'll come home take my final lot of medication and crawl into bed. 
• Night time is known to be notoriously bad in our household for me. There have been way too many nights that Dan has come home and found me in tears because I am just so worn out and in too much discomfort to sleep. It's cruel for me but it's cruel for him too! 
• Dan will try to bring me relief in the form of ice packs, or wheat bags, by checking I'm up to date on my medication, showing me funny YouTube videos or by simply lying in bed and holding my hand. Have I said how thankful I am for him??!!!
• Once I am asleep I often wake up for more pain medication throughout the night. It very rare that I will sleep right through the night. 
• And then we hit REPEAT and do it all again!!! 

Sometimes we throw in a doctor visit into the mix or there are days when I physically cannot get out of bed. Recently I drove Dan to the supermarket as he runs in and gets our groceries and I had to lie down in the back seat and sleep...to say that scared me was an understatement! My one rule is though no matter how bad I am feeling I must always get myself up to shower (even if it is just to put on another set of pj's).

I want to make this clear I am not writing this for sympathy or for you to feel sorry for me because that is the last thing I want. I am writing this to simply tell my story, share my reality. I am so much more than this darn illness but right now I cannot pretend that it is not controlling my ability to live the life I had planned for myself. I have so much hope that this is just a phase and I will regain control. Through all this pain there is still laughter, there is still joy and there is still so much I am thankful for...trust me on that!

As the month went by it became clear that the Plaquenil was coming out of my system. My left knee which I had surgery on years ago to remove inflamed synovial tissue began to swell up again...something it hadn't really done since the surgery. I would often wake up with a bright red butterfly rash on my cheeks (classic lupus symptom) and my fatigue levels hit and all time low.  

                                           

                                          

                                          

                      

In early August I was given the opportunity of some part time work for three weeks. I was to fill in at Mum's work while her wonderful receptionist and teacher aid went on holiday. I said yes because it was only for three weeks and I was sure I could muster up the strength to somehow manage this. I knew all Mums staff are incredibly caring and supportive woman and all knew about my health so there was no worries there. I also knew it would be a safe environment where I could test my ability to see how I could function in a working environment. I was excited by this challenge and to be given a purpose away from fighting my illness. 

I was determined to give it my all and not let my health ruin this opportunity, but again I learnt that sometimes no matter how determined and driven you are your health will always have the final say. I pushed and my body shoved back even harder. I would wake up struggle to get myself ready (but always managed!) then take a couple of deep breaths plaster on my brave face turn up at work; try to fool everyone that I was okay (often unsuccessfully); swallow pain medications; try to distract myself from the pain with work; finally given in and decide I needed to go home (often told to go home by the staff); come home collapse into bed (sleep for a couple of hours); force myself up to eat; collapse back into bed then start again. This routine worked for two weeks. Some days were better than others, some days I would get to work and feel better but other days there was no escaping the pain and fatigue. Through all this though I loved the work. I loved being needed and being able to help even though half the time I was frustrated because I knew mentally I could do so much more if only my body would cooperate. 

It was over the weekend of my last week that my health took yet another bad turn. I just did not feel right or even more not alright I should say. The Friday night my body raged a war with its self...morphine was my only defense. I was back on crutches in the morning much to my disappointment. I remember driving to Mum and Dads then needing to straight away go and have a sleep. My knee was achying which was nothing new but I had developed this burning and searing pain in my left foot. I couldn't wear my sock because even that caused unbearable pain and moving my toes became very difficult. As the night wore on another new symptom began...my foot started turning inwards spasming and twitching uncontrollably. Of course these symptoms didn't let off...which I hoped they would!

Two trips to an Osteopath who strapped my foot and massaged it but then decided that I really did need to go see my GP. I gave in and went and saw my GP on the Friday who took one look at my foot which was now fixed at a very unhealthy angle and said the words I always dread..."I know you won't like this but I think you need to be seen in ED". Something that I had stubbornly been trying to avoid all week. Thankfully she got on the phone and organised for me to be seen by an orthopedic doctor which saved us a lot of time. The verdict was I was placed in a moon boot to keep my foot straight and was given Diazepam to stop the spasming which worked a treat. The downside and the words the I can now hear before the doctor even has to say it "we do not know why this is happening". 

The moon boot and Diazepam were a heavenly relief and thankfully I was able to gain a lot of relief. The symptoms were still there if I didn't take my medication and the root cause was unknown but I was happy just to finally be able to sleep better and semi-function again. So lets just say to my extreme disappointment there was very little work done in my last week. Through all of this I was more worried about letting people down than my own health. It felt like another slap in the face as Lupus showed me its power. To me all I wanted and want to be able to do is work, but for now I learnt that currently my health is too unstable. I'm telling myself that this is temporary and believe that my dream job is still out there waiting. For now though my full time job is taking care of myself the best I can!!

So how did I get through all of this...well I'll let you in on something that I was holding out hope for and that was keeping me going...I had an appointment to see a private rheumatologist in Auckland on the 20th September. We decided as a family that I needed a fresh set of eyes to look at my case. Knowing I had this appointment kept me fighting and believing that things could and would change with my health. There was a lot riding on this appointment! 
  
I will share this appointment and our news in my next blog post because this one is already ridiculously long (if you are still reading congratulations haha!!) but stay tuned to find out what my new treatment plan is...yes ill say that again I now have a PLAN!! 

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!!!