Sam’s Snippets

My Second Snippet

The link below is an article I wrote for The Mighty some time ago. They have just re shared it on their ” Good Morning” email. It’s perfect for my Sam Snippets page as it is full of tips on how to create a realistic “To Do List” when living with a chronic illness.

I hope some of these tips really do help you achieve your goals.

Simply click on the link below for the article.

The perfect list

Take care

Love, Sam x

My Third Snippet….This Time a Health Update (August 2024)

Hi Everyone,

Life has been inundated with challenge after challenge as we navigate the world of Alzhiemers Disease with Peter, and my disease is taking so many twists and turns I’m struggling to get through each day physically, and getting more and more exhausted.

As you know I have made the heart breaking decision to cease blogging , podcasting and last week I realised I also needed to resign my position as an online volunteer with Arthritis Queensland after 10 years of working with this amazing organisation..

Hi everyone,

It is with so much sadness that I need to advise you that I will no longer be able to volunteer for AQ and moderate the JIA forum.

You may have seen that I have ceased both my podcasting and blogging effective immediately.

Peter’s recent diagnosis of Alzhiemers has brought with it a complete life change for us. As his primary carer and with my own progressive health issues, I am struggling to keep my head above water if I try to live the same life.

This is a new chapter for us and one I want to fill with love, not stress.

I can not thank Arthritis Queensland enough for all your amazing support. The Aspire Award nomination will never be forgotten. The support of my book and Emma’s generous Afterword contribution in her role as CEO has ensured AQ is indelibly printed in my body of work.

The friendships made with forum members, volunteers, and staff are priceless.

Thank you again for the most wonderful 10 years with AQ. I’m so grateful to have had this opportunity to serve others for such an awesome organisation.

Take care

Sam ❤️

(Extract from my Arthritis Queensland Resignation letter)

Things are not great.. I had to call an ambulance on Tuesday evening due to a massive lymphatic fluid leak from my lower right leg and foot. It soaked the entire bottom end of our bed. It started at 3pm on Tuesday’s afternoon and has continued non-stop. It’s still leaking from little holes, but also through the skin. The paramedics came at 1am in the morning and wanted to take me to the hospital, but unfortunately, Greenslopes (my hospital) would not take any patients.  

We agreed that to send me anywhere else would be really counter-productive given all my Specialists and records are at Greenslopes. Instead, they wanted me to talk to my GP asap, and call 000 again things got worse. My blood pressure was 200/100. It did go down to 160/95 while they were there, and my ECG was good, Oxygen levels good. Blood Sugar level was good so they felt relatively comfortable letting me stay home.  

The next morning was able to organise for my registered nurses to visit daily, which started immediately.

It turns out my OT, is certified as a Lymphorrhea practitioner and came over yesterday. She used to work in the lymphatic clinic at Mater Hospital. Her view is that I have Lymphorrhea, and my lymphatic system overall has broken down. My GP has put me on antibiotics. I am in so much lower back/sacrum, and leg mobilising is excruciating and for 90% of the day its impossible.

Whatever is going on at the moment just paralyses me, and I can not move forward at all… mostly the right leg but sometimes the left. Pain is also intense right across my sacrum. It’s been worsening over the past 3 weeks.

I’ve finally tested negative for Covid on both PCR and RATs after 2 ½ months of being positive.  

My GP would like me in hospital but as Peter’s Alzhiemers is worsening and we are still waiting for his approved Level 2 My Aged Care package to be allocated, I’m not really in a position to leave him. He doesn’t want to go into short-term respite care, so it’s all a bit tricky.

We would value your continued prayer support as we navigate such an uncertain chapter. .

Thank you so much Love and blessings, Sam

Sam’s Snippet Number Four – Alzheimers, Challenges and Blessings

To say life was peaceful, relaxed and full of hope at the moment would be a lie.

We are consumed with change to nearly every part of daily living.

We are getting there but not without consequences…some good, some not so good.

Let’s have a look at what I mean by that….

Here’s the link to Snippet Number Four;

Snippet Number Four

Love and blessings, Sam xx

Sam’s Snippets Number Five – Pyjama Day With Purpose…Plus A Health Update

What is the first thing that comes to mind if I tell you I’ve been having Pyjama Days?

I asked this question to my carers, Registered Nurses and Occupational Therapists.

I thought I’d get a range of answers from this group of people. However, they all answered with the same reply…..

“A day of rest curled up with a good book in bed or on the couch binging Netflix or whatever favourite series I’m watching!“

Years ago, that would also have been my answer. However, now that I’m disabled and live with chronic illness, my Pyjama days have taken on a whole different meaning

They are now “Pyjama Days with Purpose.”

At least once or twice a week, I find myself with way too many tasks than I can physically achieve unless I approach my day differently.

Something has to give when this happens, so I decided to review, yet again, what tasks were taking up unnecessary time and energy and keeping me from completing priority and essential tasks.

I have completed this kind of review many times, but it’s important to note that if your health declines further, as mine constantly does, you need to review your activity levels again and again.

I can no longer stand for more than 2 minutes, and even using a walker inside to try and mobilise is a challenge as I can’t let go of the arms without collapsing. My legs just won’t support my broken lumbar spine. So, a complete task overview was and is essential.

I realised throughout my review process one activity, which, while important to me, was also not necessary on certain days and was taking a good 90 minutes away from time I could use in a more productive way.

I love each day to put on smart casual clothes, do my hair, and make up all, which provides me with an important sense of well-being. The process only takes me 30 minutes, but I have to rest for 45 minutes before attempting it, and it takes about 45 minutes recovery time. Before you know it, I’ve lost 2 hours of my productive day time.

If I boycott this activity on days I can, I have a much better hope of using my 2 hours to complete tasks I know will provide me with a far better outcome and sense of achievement.

Don’t get me wrong, a traditional Pyjama Day of rest can be equally important, especially if your disease is throwing every symptom possible at you and functioning is impossible. I needed one yesterday, I has no choice as my body refused to behave on any level.

However, my new found  “Pyjama Day with Purpose” strategy is working so well it just had to be shared as a Sam’s Snippet!

And Now For a Health Update

To be honest, I’ve been really struggling to write this part of the blog post.

So much of what’s going on is so complex, confronting, and life changing!

I’ll try and start with Peter’s update first…..

Our Health Updates

I want to give you a comprehensive update on our situation so you have all the news and you know how best to pray. We really need prayer support above all else.

As many of you know, my husband has been diagnosed with a rare form of dementia which affects both speech and cognitive behaviour and causes delusions. He had a PET scan last week ordered by his neurologist, which confirmed the diagnosis and revealed that the damage to his brain  is severe.

We saw his Neurologist for the first time 2 weeks ago. I was with my husband (my carer came with us too to drive andhelp me get out……she is amazing and we have become such good friends).

I wanted Peter to take the lead in the appointment so the Neurologist could assess him from the start, so aside from introducing myself, I remained quiet.

Within 2 minutes the Neurologist directed all conversation to me and just kept saying “it’s such a shame”. He was so lovely, only in his early 40s but apparently the best in Brisbane. We definitely felt we were in good hands.

It is such a shame. Partly because I’m exhausted and partly because I’m grieving already the loss of my husband before my eyes daily, I find myself crying even while typing this. It’s a horrific disease.

Anyway the Neurologist did a few more tests with Peter and showed us the damage on the initial MRI. It was as clear as day to see something was very wrong.

He then wanted to refer him to an Associate Professor Neuropsychiatrist who is a friend and only sees complex cases. This Specialist is based in Adelaide but flies here bi-monthly for reques consultations.

He’s seeing us on the 24th, Oct, which is a miracle. He’ll do a full Neuro assessment, and we’ll then know prognosis, etc.

His PET scan results were quite confronting. Everything is reported as severe and more than backs up the Neurologists diagnosis.

There are so many awful behavioural symptoms we have to deal with. I won’t share them here as I want to protect Peter’s privacy while still raising awareness.

For context, though, here is one example of what we are dealing with.  I am currently paralysed in my legs due to the way my collapsed spine is compressing all lumbar nerve roots, and he will leave me stranded in a corner of the house, unable to move at all. I have to wait until he snaps out of his episode or my carer arrives. It’s not his fault. This is just how the disease is affecting him.

Everyone is obviously devastated for Peter but super concerned for my safety and care too.

I now have vocal nodules, which is why I sound like Bonnie Tyler. I have a deviated spectrum and hole in my Sinus passage, and I have a mouth/tongue that is so painful the ENT said he’d never seen such an inflammatory disease of the tongue and mouth. He is referring me to an oral specialist to see if they can find a way to give me comfort. Eating, talking, swallowing, or just moving my tongue feels like I’m moving glass around my mouth.
Anyway, at least I know there is a reason for my pain. That helps to cope.

There is so much more going on, but I’m going to have to leave it there as I’m exhausted.

Ending on a Good Note

Amidst the difficult is always the special moments.

We received this lovely and unexpected card from the Archbishop of Brisbane this week.

Some exciting news is that I’m finally independent with the arrival of my new foldable lightweight electric wheelchair. I absolutely love it.

Thank you so much, everyone, for your ongoing support, concern, and care.

This will probably be my last blog for quite a while as I am finding it so hard to pull them together due to being just too exhausted.  I also need to give my full attention to Peter and try to look after myself as well.

Lots of love and take care,

Sam ❤️