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…

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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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Nmo

Just keep Swimming

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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

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jess-and-clint

 

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Nmo

Anniversary

jesstrew's Blog

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Today is my NMO anniversary, kind of. It was today, 3 years ago that I had an MRI and a neurologist called to tell me I have MS. Unfortunately, he was wrong.I actually didn’t remember it was the anniversary until a ‘memory’ post popped up on Facebook reminding me.

Off topic for a minute, 9 weeks ago my partner had an accident off his push bike. It was catastrophic. As his body mends from the multitude of injuries, it is apparent nowthat he is a paraplegic. How utterly devastating for him, for me, for his family and for everyone that knows Clint. He is not your ‘sitting down’ kind of guy. He needs to be busy, he needs to be helping someone. Now he is learning to accept help.

On our second date I took Clint mountain biking. He almost died from exhaustion. But it was something we did together…

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Nmo

Anniversary

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Today is my NMO anniversary, kind of. It was today, 3 years ago that I had an MRI and a neurologist called to tell me I have MS. Unfortunately, he was wrong. I actually didn’t remember it was the anniversary until a ‘memory’ post popped up on Facebook reminding me.

Off topic for a minute, 9 weeks ago my partner had an accident off his push bike. It was catastrophic. As his body mends from the multitude of injuries, it is apparent now that he is a paraplegic. How utterly devastating for him, for me, for his family and for everyone that knows Clint. He is not your ‘sitting down’ kind of guy. He needs to be busy, he needs to be helping someone. Now he is learning to accept help.

On our second date I took Clint mountain biking. He almost died from exhaustion. But it was something we did together. This year, we cycled Gibb River Road together. What an adventure. Now the bike, our favourite pastime together, has taken so much away. We are both devastated. I feel a little guilty. Clint so lovingly  cared for me when I was sick. My disease sucks but allowed me to improve (even if only temporarily). Clint’s seems so permanent. Now it’s my turn to help him through. I know he will power on through, but I’m also worried about the challenges he faces. I know the tiniest  bit about the obstacles and the discrimination that he is yet to encounter. I so badly want to protect him from that, but I also know he’ll be fine.

Back to my anniversary. I’m glad Facebook reminded me, but it also stirred up a lot of emotions. On the one hand, I’m elated that I powered through the last 3 years and wasn’t really hindered too much by my disease. Looking back on the amazing things we did the last 3 years makes me happy and with no regrets, I learned to walk normally again, I learned to write again, I rode the Gibb twice, I completed triathlons, climbed too many stairs, won netball and volleyball finals, had amazing holidays and so much more, I am blessed as much as I am unlucky. Hoping the next 3 years are full of just as much fun and adventures for both Clint and I. But, I’m also terrified, saddened, worried, (insert other emotions here, can’t really put it into words) about what the future holds for me and us. I used to feel so incredibly guilty that I was sick, that I was holding Clint back. Now I feel guilty that I improved so much.

Anyway, celebration time none the less. These arsehole lesions, Evanora and Theodora (wicked witch or east and west) have a birthday to celebrate. I am celebrating not letting them hold me back for 3 years. Cake and champagne all round! Sorry Evanora and Theodora, you won’t be getting any more brother or sister lesions. You two are more then enough for me!

If anyone wants to donate to help with modifying our house to be wheelchair accessible: http://www.chuffed.org/project/clints-campaign

With Thanks and Much Love

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Nmo

Taking Control

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I haven’t written in a while, I’ve struggled to be able to put this post into words. My fear is that people will misinterpret my words and think I’m giving up, which couldn’t be further from the truth. I’ve decided to take back some control of my life. I’m tired of hospitals and doctors and needles and waiting for test results.

Don’t get me wrong, this is a good change, a good decision. Just to summarise the last few months:

In a desperate attempt for answers, I was referred to a new neurologist for a second opinion. He was awful . He stared me straight in the eyes and told me how lucky  I was to be seen by my regular neurologist and shamed me for looking for an opinion elsewhere. “He’s the best we’ve got you know?” He hadn’t even read my notes, or scans or any details but was happy to tell me that he trusted my regular neuro and wouldn’t offer an opinion different to his.

Then he charged me $350!

In other news, the weird rashes have been coming and going. The rashes that have had the attention of all my specialists. Sometimes so bad that my entire legs would be bruised. I was seeing a dermatologist who took biopsies from my bum. (ouch!). The results, of course, were inconclusive. Complicated, but inconclusive. The biopsies were negative for vasculitis etc but when looked at under a microscope the samples resembled vasculitis. The report simply said ?vasculitis but no evidence on staining.

I was taken to an expert panel. It was intense and a little overwhelming. There were more than 30 doctors.  My story was presented to them. All my info, neuro, derm, immunology, urology, hepatology, on display. In small groups they came to see me, asked me hundreds of questions, took photos of my rash and touched it. It took hours. By the end I was so exhausted and sick of talking about myself! I left before I should have. I couldn’t stay any longer. I went and had a beer and played volleyball!

The next day, I had more and more tests done. This time for bleeding disorders, connective tissue disorders, collagen disorders. Not surprisingly, my specialist rang to say they are all inconclusive. He said that at the panel discussion, the doctors all agreed there was something strange going on. They are all interested to know the answer, if there ever is one. Like my neurological disorder, my skin lesion diagnosis remains elusive. And then the words “I just don’t think there’s anything else I can help you with. Come see me if it gets worse.”

Apart from looking like I’ve been hit by a truck, the skin lesions don’t really bother me. They are not painful. Hearing those words though, hearing another specialist give up, hit me pretty hard. It’s almost exactly what my neuro says; that they’ll get more clues when I get worse. It just doesn’t sit right with me!

So back to taking back control…

Its been almost 3 years. I’ve never had treatment for my condition, whatever that is. My recovery has been a mixture of time and my hard work. None of the many many procedures (some painful, some degrading) have lead us any closer to an answer or any closer to a treatment that will improve my well being long term. The only intervention that I can see that has helped has been strength and coordination training; physio. Realistically, the emotional ups and downs from continuous testing and hoping is doing more harm than good.

That’s where the taking control plan fits in. I’m saying no more. If/ when I get worse, I’ll reassess. In the mean time, this is my life, and I’m not going to waste it away in medical appointments or dirty hospitals.

I’m really proud of myself for how I’ve handled all this so far. I’m proud that I never gave up.  I’m proud that I hand wrote the Christmas cards even when they were eligible coz my hand didn’t work. I’m proud that I’ve continued to work and find work that I’m able to do. I proud that having a pocket full of catheters and lube didn’t stop me working on a mining camp surrounded by hundreds of men.  I’m proud that I did the Gibb River Challenge again, even if it was with only 1 and a half legs and a pocket stuffed with catheters.  I’m proud that I persisted at volleyball, even when it broke my heart how frustrating it was learning to move my arm again and I’m proud that I’ve come to this decision and I’m going to take back control of my life again. Our social culture teaches us to be modest, but I’m teaching myself to be proud. It’s ok to pat yourself on the back every now and then! I’ve done so well till now and done what I’ve been asked. Now it’s about me!

 

 

 

 

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Nmo

Gibb Withdrawals

We got home from our Epic adventures last night. I woke up and took my pindan painted bike for a ride in an attempt to avoid major Gibb withdrawal. The road was smooth and free of corrugations,
the air was clean, fresh and dust free, There were no oncoming road trains to shower me in dust, There were no croc infested river crossings.  I didn’t get sunburnt.                                                                                                                                                                       It was awful!

On a scale of 1 to Catastrophic GIbb Withdrawals, I am currently a 9.5, which is sure to rise on Tuesday when I return to work! 

On a serious note though… massive and heartfelt thanks to our many supporters; who support us year after year. Special mention to West Coast Eagles for their donation and once again, to our favourite baby wipes company Aussie Wipes, who continue to keep us clean (ish).  We couldnt do it without you. 

Each year at this time I plead with my body for another relapse free year so I can go on one more Gibb adventure. So again, I am pleading for a strong and healthy year ahead! Only about 345 days until GIbb 2017! 

Once again, many thanks for all your support, especially all the kind words and Encouragement! We did it! 

PC Peddlers out. 

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