Saturday, July 1, 2017

How are you? Overwhelmed!

I would be the first person to raise my hand and admit that I love a good inspirational quote. My brother has given me a lot of slack over this. His favourite one to quote back me is 'life is not measured by the breaths you take, but by the moments that take your breath away'. We had that quote on our stairwell until he thought it would be funny to change some of the letters..brothers!
Often when I am unwell I am guilty of searching for these type of quotes on Pinterest as a way of bringing myself motivation and comfort. I was on the other night at goodness knows what hour and found these quotes were beginning to irritate and annoy me which was the opposite of what I was trying to achieve.

Here is an insight into my thought process that night:

Pinterest: Life is not about waiting for the storm to pass but learning to dance in the rain
Livvy: 1) I hate the rain it makes my joints hurt; 2) I can't even stand up so how am I meant to dance!

Pinterest: Choose where your energy goes
Livvy: Or get an autoimmune illness and it will decide for you!

Pinterest: What you allow will continue
Livvy: What?! I just have to not 'allow' lupus in my life and I will be cured?

Pinterest: Just breathe
Livvy: I am bloody breathing!!!

Self care activity fail!
Then the realisation hit me...I am officially in a funk!!

I strive to be an optimistic person; to be positive; glass half full kind of girl but lately im going to be honest I have felt overwhelmingly irritable. Lately Dan's favourite saying is to tell me to take my sassy pants off!

Life has been overwhelming....oh so overwhelming! So now I am going to write it all down and hopefully try to get some of these feelings out of my spinning head ...sorry in advance I don't have the energy to take my sassy pants off! This might be a long post.

I was watching YouTube (yes you spend a lot of time on the internet when you are chronically unwell) before I had my car accident and there was clip of a girl crying because her car got written off and I can distinctively remember thinking 'pffffht really...who cries over a car?!' fast forward a few weeks later I had my accident then guess what I was the girl crying over her car being written off! Not cool universe; not cool! Yes folks my beloved and faithful Echo was written off and is now probably been condensed to scrap metal. RIP! Lesson learnt it turns out you do get attached to cars!

Next was a trip to Auckland to see the hand surgeon on the 8th June about my misbehaving tendons. Again I am reminded of the impact that Lupus has had on my poor joints. I am told this is not a common procedure that he would only perform every two years or so and this is coming from a man who solely operates on hands. It seems the only way to be able to gain relief from these subluxing tendons now is going to be through surgery. He told me he wouldn't be able to give me perfect hands which I laughed off and said as long as they work better than they currently do I will be happy. The plan was for me to get a MRI here at home then he was going to review the results and get me back up to Auckland to make a surgical plan.

Since currently my health has been too unstable for me to be able to hold down even a part time job I have made a constant effort in trying to take back control in manageable ways. One way I am able to do this is through volunteering. I was put in touch with an amazing new community charity who were keen to train me up to be able to become a support worker. I eagerly went along for a day of training on the 12th June and left feeling humbled about getting the opportunity to help out. Mentally I felt re-energised and excited; physically I felt absolutely awful! Yep you guessed it that one day of training triggered a nasty flare. The rest of that week was spent recovering. Since then I have also had to reluctantly had to turn down an opportunity to support a guest due to my own poor health. This never gets any easier trust me.

Lets take a minute to add in some happy news...that weekend we celebrated my wonderful Nanna's 80th birthday. Now Nanna knows how to throw a party and I'm talking juke-box, disco ball, dancing till midnight party. Plus she wore a tiara! She really is my Queen! It was also made extra special by having Josy travel down from Auckland as a surprise. We made such special memories that night.

It never ceases to amaze me what adrenaline and a few glasses of bubbly can do to my body! I danced like every bone in my body didn't hurt and for the night it was amazing to just forget. To just be in the moment. Sadly we know what goes up must come sheer determination and drive won that night but now my body took over. Did I regret it? Not in the slightest! Was the next week betcha it was!

Monday: was a horrendous pain day! Was up in the shower at 5am trying to gain some relief from blasting myself with hot water. Dad had to drive me to an appointment because I physically couldn't and I had to cancel another. The rest of the day was spent in bed or on the couch. I looked back on photos from Saturday night and wondered how I was still the same person.

Tuesday: I spend all day in bed in preparation for Seasons for Growth group. I had missed last weeks one due to being unwell so was not missing another one. Somehow I got there and pushed through it. Thanks again adrenaline! Then at 8pm I get an unexpected phone call from Dan...can you please come and pick me up I don't feel well? Headache, body ache, fever, shivery and a nasty cough. Hello Flu! After getting Dan in the shower and then into bed I did what any person with a compromised immune system would do, lock myself away in the spare room and pray I wouldn't catch it.

Wednesday: Dan is so sick! I don't think he moved from the couch except to change his t-shirt about five times. Of course that means it's a Netflix day and we basically watch the new season of Orange Is the New Black in one day. At 1pm I had my MRI for my hand. Now this was an experience. I have had plenty of MRI's before so knew what was to be expected. This was a new MRI machine that I hadn't been in before as it was done privately and not through the hospital. I had to lie in an awkward 'superman position' with my hand stretched out and placed firmly in a concoction to hold it still. Once they got me as comfortable as possible and Ed Sheeran was playing through my headphones I was put into the machine and this is when something bizarre happened. As I entered I got this overwhelming feeling of vertigo. I felt like I was rolling off the bed! I then began to reason with myself maybe I'm anxious? Maybe my body is just really uncomfortable in this position? Maybe I'm coming down with Dan's flu? During this scan I think I utilized all my mindfulness and deep breathing exercises. Throughout my time in the machine the tech kept coming in and would try and realign my hand. After about 45 minutes she came in pulled me out and said...'I'm sorry but part of the machine isn't working properly and we cant get clear images so we are going to have to order in a new part and you'll have to come back and be re-scanned'. Shit! I just lay in there feeling so miserable for no reason. By this stage I just needed to get out there before I a) passed out or b) threw up! I made it home to the couch and then slept for a few hours and tried my best to be patient, kind and tend to Dan's needs.

Thursday: Still sleeping in my single bed and feeling quiet proud that I have not caught Dan's flu. Thank you flu jab. My day started nice and early with a hospital appointment to see my rheumatology nurse. There was no sugar coating my health this time. We looked over my long list of failed medication and I had the sinking feeling she was preparing the 'I don't know what's next' speech instead she said ' I think we need to get you a QE hospital admission'. QE Health is an amazing pain rehabilitation hospital in Rotorua. When I was 17 I did a three week and then a two week stay there and it changed my life. We decided that I needed this again to get a fresh set of eyes to renew my case and for me to work on rehabilitating this weary and pain riddled body of mine. I can do this!

Friday: Another early start for round two of my MRI scan. I was nervous this time in case I had a similar reaction so I took an anti-nausea tablet in preparation. I mentioned it to the tech and she said that for some people the magnetic field can affect their inner ears and this is especially the case in newer machines. Brilliant Liv you had to be someone who is experiences this! Again as soon as I was pushed into the machine the dizziness began but this time I was prepared so it was more manageable. This time everything worked as it should and they got all the images.

What a week it was! We have learnt that our household does not function so well when Dan gets sick.It was this weird role reversal which was made harder by the fact that I wasn't well myself but I had not caught his bug so I was happy....until Saturday struck. Hello gnarly headache, blocked ears, sore throat, stuffy nose and cough. What a delightful end to a stressful week. Thankfully mine hasn't been as bad as what Dan got and my body has been able to fight back. Perhaps thanks to my flu jab??

The latest update is I have an appointment to see the hand surgeon on 20th July and my rheumatologist has sent an urgent referral to QE hospital. Busy times ahead!!!

Back to that night when I was on Pinterest and I thought I would give it one more try and this quote appeared on my screen....

"Your story isn't calm. 
The road has been chaotic at times, 
filled with detours and rain and loss so sudden, and too soon. 
Sometimes the bliss was so elevated your heart could hardly hold it. 
Sometimes it was maddening to have, and then to lose. 
You learn soon enough that it hardly ever goes as planned--gentle, easy and smooth. 
But that my friend,is what makes you fascinating.
 You have something to tell.
Something you've walked though.
 Something wild
. Something courageous.
 Something true. 
You're made of stories within stories within even more stories. 
Those quiet depths of you."
- Victoria Erickson

Suddenly in the middle of the night engulfed in a body full of pain I reached out and grabbed Dan's hand and whispered the words 'we are going to be okay'.