Waiting, waiting, waiting!

When you are chronically unwell you spend a lot of your time waiting.

Some people spend years upon years waiting for a diagnosis; 

you wait in doctors’ offices; 

wait for appointments to come in the mail;

 wait for phone calls to be returned;

wait to hear what the next treatment plan is.  

You wait to feel better…..

you wait for symptoms to lessen; 

you wait for medications to take away your pain;  

You wait until you feel strong enough to get out of bed in the morning.

You wait for that day when things won’t be this hard.

I’ve been spending so much of my time these last few weeks waiting. I attempt to be proactive and take control and then feel frustrated when I am reliant on a body that does not want to cooperate; symptoms that will not go away and doctors that are scrambling to try and work out what to do with me. I just want someone to firmly take control and say ‘Liv this is what is going on and this is what we are going to do about it’….but I am still waiting for that to happen. 

I am pretty used to putting my head down and just getting on with things the best I can. I try not to make a fuss and stupidly feel guilty about bothering my doctors. If I reacted to every pain and every symptom I have I would never leave my doctor’s office but there are times when enough is enough and I need help. At my most recent appointment with my rheumatologist  nurse she could instantly tell how unwell I was through the change in my demeanor. She said to me that I am usually so bright and bubbly so seeing me withdrawn, teary and worn down she knew my quality of life was being severely impacted. It’s ironic that the times when I need to be my best advocate and communicate well are also the times when doing that often feels impossible. Even when I am able to do this I learn there is no quick fix or easy answers. My health is complicated and complex. I feel helpless and out of control. 

The best way I can try and relate this helplessness feeling in a way you might understand is like the feeling you get when you are very unwell with some kind of bug and it just wont go away so you go to your doctors. During your visit you explain your symptoms hoping they will be able to prescribe a quick dose of antibiotics to make you feel better.  After the doctor looks you over you are told that its viral and you are going to have to ride it out. No medicine, no quick fix just live with it. You are desperate for the doctor to make you better!  Sadly Lupus can’t be fixed with five day course of antibiotics and there is only so long you can wait before symptoms need prompt action. 

This morning I found myself waiting yet again. I woke up with a knot in my stomach knowing I had to make a phone call and update my nurse on what has been going on these last few weeks. I psych myself up make the phone call but she is not there so I leave a message for her to call me back. Then I found myself sitting around trying to work out what to do. I knew if I left to have a shower she would call and then we would spend the rest of the day playing phone tag. As I was about to give in and go and have a shower she called. After explaining what has been going on and how I'd done everything on my end and asking what to do now I knew what was going to happen…can you guess? More waiting! Now I wait for the Rhemuatolgist to get back to my nurse and then she will get back to me. Even when you are proactive there are not always quick answers. I know now I have done everything on my end so I can only hope I hear back soon. This is just another part of being chronically unwell.

Truth time…these last few weeks have been awful. Last Monday I sat in my GP office with Dan and was told my options were to be admitted to hospital yet again or to try and increase some of my medication with the likelihood that it wont help but maybe give me some relief. I say how much I want to avoid hospital, how mentally I know I do not have the strength to deal with that again so we opt to increase my medication. I just feel so fragile both physically and mentally that we know it wont take much to cause me to crumble. Although I felt awful I still felt safe and in some form of in control at home so we decided it would be best to try this medication with the promise that I would go to ED if things got any more out of control. So that night I increase my medication with the hope that it might calm things down to find that it only makes me feel worse. Typical!! I don’t know if I’ve talked about it on here before but I’ve also been diagnosed back in 2013 with something called ‘Inappropriate Sinus Tachycardia’. In very simple terms (please google if you want to know more) for some unknown reason (probably Lupus related?) my heart will beat incredibly fast constantly when I am simply resting and then just further increase when I attempt to do anything. It makes me feel miserable and causes lots of unpleasant symptoms. When I was in my GPs office my heart rate sitting down was 120 and that was with a high dose of beta blockers. Dan and I went for a very gentle walk and his heart rate was 57 while mine was 157! I should probably add I am also waiting on a referral back to Cardiology. The increase in medication left me feeling extremely fatigued, dizzy, disorientated, nauseous and just really weird. I waited a few days thinking maybe my body just needed to get used to it. No such luck! I rang my GP clinic and spoke to the nurse on Friday who when I explained my symptoms asked if there was any chance I could be pregnant….spoiler alert NO I am not. My GP rang me back and confirmed that it was the medication making me feel lousy. We have split my dose up to see if that will help but ultimately I will need to change as it’s not effective for my body.

So for now I find myself yet again waiting…..waiting to hear back from doctors, waiting for a plan, waiting for these symptoms to lessen and my quality of life to improve.

Waiting; waiting; waiting yet still clinging fiercely to hope for better days.  

 My parents work in education and last week there was a teachers strike and I couldn’t help but think how nice it would be to strike against my own body about now. These working conditions are rubbish, the pay is non existent and there are no holidays! I’ll tell you one thing there is plenty of though….sick days but I promise you they are so over rated. 

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.......