Nmo

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Sharing this from another blog because it speaks volumes and is so very true 😘

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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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Nmo

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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Nmo

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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Nmo

When Life Gives You Lemons…

lemons

You could be forgiven for thinking that life has given us lemons.

I see it differently. Give Clint a lemon, and he’ll gladly chop it up and eat it like an orange. He loves them. I prefer them with tequila. However you see it, lemon trees are beautiful, the flowers stunning, and the fruit is super useful.

We certainly didn’t imagine this is how our life would be and there is plenty we’d change if we could. We have cried many tears over the last 3 years. I wish Clint didn’t have his accident, I wish Clint could walk, I wish my shitty brain lesions didn’t exist or would just bugger off. Sadly, they’re not things we can change.

Life has given us lemons…

So we’re going to make orange juice and sit back and watch as life wonders how we did it.

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Just keep Swimming

dory

Just a quick end of year post and update on us. I wanted to write about coping. Lets face it, it’s an interesting topic. How many times have you heard someone say “I don’t know how she/he does it?!” “how does she manage with 4 kids?” “how does she cope with her sick kid” “how does he cope being away for so long” and so on.

It’s the weirdest thing. If someone had told me 10 years ago, that I would be diagnosed with MS, no, NMO (or whatever), I would have said “there’s no way I’ll cope with that!” I love my netball too much, I love cycling too much, I love working away and travelling too much. The thing is though, when it happens to you, you just do. There’s no wrong way, or right way, but there are some unhealthy ways. When it happens to you, when something life changing happens, it’s months before you realise ‘I’m actually coping with this,’ sometimes even years. Your body goes into auto pilot and it just happens. I’m not saying it’s always easy, but it does just happen.

Same goes for Clint I think, jeez it certainly hasn’t been easy, but I think Clint’s auto pilot just switched on. Kind of like a Dory moment… “just keep swimming, just keep swimming.” If I had known this was going to happen earlier, I would have guessed Clint wouldn’t have coped quite this well. I guess it helps when you have a team of people on your side and certainly the right attitude. He amazes me everyday.

People often ask me, how are we coping?  I find this a strange question. Don’t stress if you’ve asked me this, many of you reading this have probably asked me that very question. It’s strange because, how do you answer it? I like it better when the question is followed up with “is there anything I can do to help?” because I can answer that one!

We are coping just ok. We are leaning on each other. It’s a strange situation. So much of Clint’s job was to care for me, now so much of mine is caring for him. We are caring for each other I guess. And we are doing ok. A psychologist at RPH said to us one day ” it’s like being up high on a ledge, there’ll be days when you are hanging on by two hands,  and days with just one finger, you are still hanging on, and that’s what’s important.” That has stayed with us, both of us.

Neither of us would wish for our situation. It is unique and often terrifying and right now it is devastating. There have been many set backs  and it has only been 3 months since Clint’s injury. We are hanging on though, and I just know we will continue to. I know this because we have each other, and so many other people helping us and because we have pretty efficient auto pilots. I think we are just pretty ordinary people in an extraordinary situation with great autopilots. Don’t forget about us though. When we seem to be doing ok, keep asking us if there’s anything you can do to help. Sometimes it helps just hearing it!

And with that I wish you all a happy belated Christmas and a better 2017. I think we have had well and truly our fair share of dramas, so here’s to a much needed boring and uneventful 2017!

Cheers

clint swimming.jpg

jess-and-clint

 

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