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 and help 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 request 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.

It’s just all so tricky as he doesn’t want to go into a home, and I don’t want him to either. We have a lot to work through as we consider our current and future needs.

I’m supposed to be in hospital as so much is going on with my health aside from a broken body, but I’m not allowed to leave Peter. While he has a Government Aged Care package the funding is not enough to cover his needs. That’s all being escalated for urgent review.

My carer is amazing but obviously can’t be here 24/7, which I really need. I have government  funding, but it wouldn’t last for long if we did that. We just have to constantly think outside the box.

I am under Orthopaedic Specialists, Hematologist, Pain Management Specialist, ENT and my Hematologist has referred me to a new Endocrinologist to completely review my case. I’m first on his cancellation list with a “save” appt in Dec.

I saw my ENT yesterday and have a whole range of ear nose and throat issues.
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 ❤️

Sam’s Snippets

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