Nmo

Together we are Stronger

 

together

 

I told my story at the first Australian NMO conference last week. To be honest, to get up and share the worst times of your life with a bunch of strangers is very tough. Luckily, I was amongst people who understand. I got to be in a room with a HEAP of people like me. We all got to share stories, we heard from the specialists and most amazingly, we were reassured that the research is happening and achieving some pretty cool results. So there’s a positive.

 I was worried about speaking and telling my story and guilty that I was lucky enough to improve when others weren’t. And now I’m going to share it all with you. This is a snippet of my story focusing on the positive. The aim was to talk about adapting after illness. Here Goes..

 

 

I’m going to start with a quote from Helen Keller:

“Although the world if full of suffering, it is also full of the overcoming of it”

When I first noticed some strange symptoms, I was 28, fit and working as a remote area emergency nurse. I was situated on a tiny island in Papua New Guinea. The company I worked for also coordinated air retrievals. I knew how complicated it was to medically evacuate someone. For this reason I told no one I was unwell. 

By the time I got home, my whole left side was affected. I was left handed and I couldn’t hold a pen in my hand. 

They told me a had tumefactive MS because my lesions were large and unusual looking. When I was told about 6 months later that it wasn’t MS, but probably NMO, all I could remember was being told earlier, ” if it’s not MS, it’s universally worse. ”

What on Earth is NMO???

I was scared.

A counsellor from the MS society asked me: “who is Jess? Describe yourself in 3 points”

I thought carefully about this. 

I thought:

  1. I am a remote area emergency nurse
  2. I play volleyball in the WA Superleague. 
  3. I love to travel and mountain bike with Clint.

And I cried, all these things seemed impossible now. 

I would have cried everyday for 6 months. But I had promised to work on these 3 things. 

I found an old notepad at home. I started writing (scribbling as it were), at least 3 hours a day. I focused on my right hand. I was going to become right handed…

AND I DID. 

After about 7 months, I started working again a few days a week. It was not what I expected. It was an incredibly boring job, but one that I could do. I was exhausted and grumpy. I focused on simple nursing skills, like taking a manual blood pressure or pulse with my right hand. 

As I improved, I had a few different jobs, until the right one. I now work for the very company I talked about before. I give medical advise to remote places and I am a liaison for an air retrieval service for our unwell clients. 

It’s not the same job I had before, it’s a great compromise though. 

My second point was my sport. When I first got sick I had unrealistic expectations. I went to boot camp at my local park everyday. It was a waste of time. I fell over a lot, was covered in bruises and didn’t improve. 

I knew I had to start smaller. I found a physio who does individualised yoga programs. We worked on my balance and proprioception and then strength. It was a slow process. Eventually, the program improved every aspect of my physical health, and in turn, my mental health also. 

I now play volleyball and netball in the WA superleague. I am not in the top team anymore…. and I don’t care!

My 3rd point was my relationship with Clint. Shortly after I got sick Clint took me to Kangaroo Island.

I walked up a set of stairs. 

IT WAS A EVERYTHING!

After a lot of time, practice, patience and bruises, Clint and I started mountain biking together again. We even did the Gibb River Challenge; a 700km team mountain biking event through remote Western Australia. 

Unfortunately, shortly after this, Clint had an accident off his bike. 

He is now a paraplegic. 

It has not been easy. I am Clint’s carer/ he is mine. Now we play golf together and we go on dates to physio together. We even made it to Melbourne this weekend only 3 months since his discharge from rehab!

We don’t know what will happen in the future, no one does. We don’t know how we’ll manage if/when  I have another relapse. But we’ve both learnt how to adapt. 

If I can suggest anything to the people in this room today, it would be to start small, take baby steps and celebrate each and every one of the smallest wins. 

I’m going to finish with a quote from my hero, the late Stephen Hawking:

“no matter how hard life may seem, there is always something you can do and succeed at”

Thankyou.

 

And that’s it, a very condensed version of my story.

You’ve probably noticed that I haven’t written for a while….

Update in a nutshell….

Clint was very sick

He had some rare complications following his last surgery. He was faced with an impossible decision. To have surgery to help a complication, or to wait and see what will happen. Both came with potential catastrophic outcomes.  He was an absolute trouper though it all. And we chose not to have to surgery. So far, it seems we chose wisely. Go us!

So he came home about 3 months ago and we have been bombarded with medical appointments. I may have also neglected my own shit during his hospital time so I am catching up on appointments too  (like a good patient). So if I’ve been off the radar recently, that’s why.

Things are starting to normalise now (or normal for us I guess), so I’m back! And planning our next adventure. Clint is planning to abseil down the QV1 building (crazy!), I’m planning a more relaxing, wine drinking, bush retreat getaway for the two of us 🙂

 

wine

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Nmo

Worry

I have been a nurse for over 12 years

I can categorically say that I changed in every aspect of my nursing 4 years ago. I started to see things from the other side, from the patient’s side.  The side where people talk about you, not to you. The side where you are interesting, only because you are rare. The side where information is withheld; to seemingly protect you.

More recently, I have unfortunately experienced the side of the worried family member. I am proud to say that I am that annoying family member that asks too many questions, that requests the patients notes, that demands to see the scans. That complains. That writes a list of questions to ask.   I remember feeling frustrated at family members like me. I remember gathering with my peers and talking about that annoying family member; I remember when visiting hours couldn’t end quicker so “I could just do my job”

I am a different nurse now.  I understand more now. I am the patient, I am the annoying family, I am the nurse. I know now that my job involves more than the care plan, the drugs, the dressings, the showers and washes. More than a timeline of tasks.  I still get frustrated, but with more understanding.

Clint is sick.

I am worried.

And because I am worried, I have become an even more annoying family member. I am so frustrated. I’m frustrated at practitioners not giving us all the information. We get told small snippets of information and then we worry. We get sold the ‘bright side’ and the get told “it’ll be ok.” I was guilty of this. I was guilty of making big problems seem smaller to ‘help’ the situation. Truth is, it helps the practitioner. It doesn’t always help the patient. It doesn’t help Us make tough decisions. Knowledge is power. To all my medical friends and contacts please don’t’ withhold knowledge. Just be honest. Consider if the shoe was on the other foot.

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Nmo, spinal cord injury, syringomyelia

♥ Better Together ♥

Clint has spent half of the last 12 months in hospital.

It is quiet and lonely at home without him. I miss him and I don’t sleep well without him.

It has been so incredibly difficult watching him deteriorate with this bloody syrinx. Even more difficult watching him in pain. This bloody syrinx, who even knows what a bloody syrinx is anyway?!!!

It’s also so ironic. I know now how it feels when the person you love is unwell. How helpless it is knowing there is nothing you can do to ‘fix them’. Just how Clint and my loved ones must have felt 4 years ago when NMO took hold of my life. I truly don’t know which is worse now, being the sick one, or being the support person. Surely this is the end of our bad luck… but the looming fear of NMO and reoccurrence of Clint’s Bloody syrinx still haunts us.

And now even more ironic, our beloved bunny has a neurological condition. She is having vision problems. She certainly is a welcome fit in our broken family! Like being ginger wasn’t enough to fit in, she had to take it one step further.

Things are tough but are still looking for the rainbow and the pot of gold that surely must be heading our way! Truth is though, this is just life. There are people seemingly better off, and people seemingly worse off. Life offers no guarantees. Maybe we are just destined to have shitty luck, or maybe we are actually just incredibly lucky to have found each other to begin with. This is just our story.

Be thankful for what you have. It could always be worse. IMG_6262

 

 

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New Goals

 

 

 

 

IMG_5487 coffeeRecently, Clint and I met with Real Heidi (FYI top chick) and did an interview for her podcast; ‘Real Heidi, Real People, Real Stories.’ What an experience! Writing this blog for me has been a way to tell everyone what was happening with us, without having to talk about it out loud. My blog has been like therapy for me in many ways, but also a way of avoiding talking about things. So speaking out in a very public way about our story has been pretty epic therapy for both of us I think!

You can listen and download from iTunes at:

https://itunes.apple.com/au/podcast/real-heidi-real-people-real-stories-podcast/id1242670311?mt=2#episodeGuid=5dca4462-be4c-4a9a-b615-a7a40012cdf5

or at http://www.realheidi.com/podcast

Anywho, an update with us…

We are aiming to get Clint home from hospital in the next week or so. It felt like forever that he was laying flat and unable to do much physically. There are only so many games of uno you can play. But as soon as he was able to go to the gym again, things moved pretty quickly. I was laughing at him for using the pink 1kg weights, but my teasing didn’t last long as he started developing his strength and endurance so quickly and upping the weights.  He is starting to put on much needed weight too (so unfair right?!Wish he could just take mine). He is in the gym everyday now, usually for 2 sessions and going to the pool if possible too! What a machine!!!!! Super proud of him.

It’s not without set backs of course. He has lost some sensation to his left hand side, and he has patchy sensory loss higher than his original injury. This was a result of the swelling, or the surgery but is a small price to pay considering the possible consequences without the surgery. Surgery wasn’t really a choice. Its almost 6 weeks post op so the period of spinal shock should be over. But there is still a chance he could regain this sensation (hopefully). He had a really great relationship with his doctor this time, but she has left now so that was a bit heartbreaking 😞 Such is life I guess.

If it’s true that chicks dig scars, then I am going to be fighting them off! He has one of the biggest scars I have ever seen!

I am doing well. Just the usual stuff. Arthritis is a bitch, and I’m told is a consequence of my apparent myriad of autoimmune problems. I’d love to have a diagnosis that ties them all together. But, no such luck as yet. My rheumatologist believes that things will become clearer as time goes on. Apparently 3.5 years is not long enough? All we can do is hope that I don’t have a catastrophic relapse before we figure it out! I’m staying hopeful anyway.

We have started up our crowd funding campaign again. There are so many things that we still need help with. He talked about them all, wrote a list, and then chose what is most important to us going forward at this time.

We have 2 priorities…

  1.  Modifying the kitchen, as little as is necessary, but enough so that Clint can reach the bench top and cupboards easier. Getting him back in the kitchen, and whipping up some delicious masterpieces again is beneficial for us both 😜
  2. We need a standing frame for Clint at home. A standing frame is a device that will support Clint to stand and exercise at home. The importance for us, is that he would be weight bearing and thereby increasing his bone density. The reason we see this as a priority is because there are so many new assistive technologies already developed and being developed that allow paraplegics to stand and move, but without adequate bone density in his legs he’ll never be able to use them, now or in the future.

We are so super appreciative to everyone who has already donated in our previous campaign. You will never know how much you helped us. To donate, please go to:

https://www.chuffed.org/project/clints-campaign-crowdfunding

Now for some parting words of wisdom?  (Insert bunch of clichés here.. )

Haven’t got many this time.
Life is too hectic to be philosophical at the moment. I think the podcast nails it really. Have a listen.

Peace out.

 

 

 

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Nmo, spinal cord injury

The High’s

 

Obviously anyone reading this knows that the last few years have been a bit tough for Clint and I, the last 6 months especially. Spinal cord injury, at least in the beginning is about as demoralising as anything I can imagine. I am actually embarrassed at times that, as a nurse, even I didn’t realise the extent at which life is suddenly and catastrophically changed. It’s not just a matter of limbs not working, or not being able to walk. It is so incredibly more than that. It is pain and crippling fatigue and incontinence and infections and pressure sores and inaccessibility and it’s expensive and depressing and frustrating and lonely. It is having your loved ones checking your bum for pressure sores, it is bringing spare clothes with you in case you have “an accident,” it is endless visits to doctors and specialists, relying on someone to help you get around and all while struggling to hide the pain.

Amongst all the struggles, are the highs. All of a sudden, the so seemingly small achievements become astronomical. It’s like something chemically changes in the brain. You feed on the smallest of highs because they are what keep you going and it’s so exciting! It was learning to transfer unassisted, it was cooking a meal, it was a day without an accident or a trip to the shop independently to buy a coffee from the café.  It was a day with family filled with laughter. It was a productive day in the shed. It was buying a modified car, it is a glimpse of the independence that we know is not too far away and last week,  it was a session at the physio (yoga therapy) that left us both on the biggest high. It left us with the positivity and the reassurance that Clint will just continue to get stronger, while the hardships (hopefully) become less. And all of a sudden, the highs feel so high, that the lows feel more manageable.

At times it is a scary reminder of my possible future with NMO (or whatever). I sometimes look at Clint and wonder how we will possibly manage if we are both paralysed. And then other times, I admire Clint’s determination and positivity so much that it changes my mindset. If this becomes my reality too, we’ll get through it together. If he can get through all these things without totally losing his shit, and still manage to make us both laugh each and everyday, well then, I can manage too. Although… it is still my belief that I’m going to be ok and that I AM going to beat the odds.

Below  is a link, a collection of the “highs.” It makes us both cry, out of happiness and out of a belief that the best is yet to come 🙂

 

 

 

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Positive Thinking… Or Not

I love reading people’s stories of overcoming hardships. I’m the biggest sook! I read and watch stories all the time and I cry out of happiness or sadness or whatever. I just love the stories and love a good cry.

Most of all I love the stories about people who used their hardships to better themselves, or create something new. Because, lets face it… sometimes will power alone isn’t enough.

Don’t get me wrong, the power of a positive mind is great, but it can’t fix a severed spinal cord. And sometimes, actually often, people die from cancer. Did they die because they weren’t positive enough? Because they didn’t truly believe they’d get better?  No, of course not! They die because cancer is a an arsehole of a disease. When I hear people claiming they overcame their disease, or injury or whatever because of their positive attitude, I think good on ya! I’m happy for you.  Great job! And great job to all the hard working medical staff and scientists too.

I spent almost everyday with Clint while he was in rehab, well everyday I could be there anyway. I met some incredible people. I met people who came in paralysed, and walked out. And I met people who tried their best, were positive, did their Physio, took their pills, did everything right, but still left in a wheelchair. If only will power and a positive mind were enough! Heartbreaking stuff, but most of these guys and gals left hospital with a great attitude and desire to ‘get back on their feet’ so to speak.

When I was sick, I threw everything I could and every ounce of energy I had into ‘getting better.’ I told myself everyday and I promised Clint that I’d improve. And I did. And I still am. And I’m bloody thankful for it. I worked really hard at it, but frankly, I was just one of the lucky ones. No one knows why some people recover better than others in brain or spinal cord injury. I was lucky, Clint was not. He worked just as hard as me, harder actually. And he is still working on it.

So please don’t tell me stories about how other people got better because they believed.  Chances are, I’ve heard the story already. And chances are I’ll get pissed off at you, because Clint didn’t deserve to become a paraplegic. He worked just as hard as everyone else. Anne didn’t deserve to die from cancer, and she was the most positive person I knew. A diabetic needs insulin, will power can’t make their pancreas produce more insulin. Sometimes shit things happen, and there’s nothing you can do to stop them.

Both Clint and I are incredibly positive about our future. Neither Clint’s disability or my illness will get in the way of us living a great life. But without a new spinal cord, or a robot suit, or a ground breaking new discovery, Clint is not going to walk again, positive thinking or not. It’s bloody tough, but we are ok with that. And we are getting on with life the best we know how with all of your support. Thanks and Cheers 😘

 

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