So I made a promise that once I got through the Corowa/Melbourne trip, I’d come back and have my first winter back in society. Thanks to Jo, Hans and Elise, I had a few outings!

Most of you know that precovid I started skipping winter, and therefore the flu, by heading to Europe. This came about because in 2017, I wound up in hospital for a rough 5-week stay, and it was yet again another hospital stay during August. I remember afterwards looking at my life from above, thinking why the heck do you stay here in July-September each year when you have a 100% strike rate of ending up in hospital or doing hospital from home. You are basically choosing to line up year after year to wind up very sick!

So I ran the plan of Winter In Europe past my medical team. They all at first leant back in their chairs, pondering, and then said it was a remarkable idea. I was fortunate that I could run SOS anywhere; I loved solo travel, I loved new cultures, and I’d love to stay well. So we agreed on various countries and put in place medical plans in advance in those countries.

Then COVID hit, and one of my specialists suggested I find a new way until COVID treatments were invented… so I started skipping the large volume of winter bugs by heading to Cairns (Trinity Beach to be tucked away in a little village and see the Dudas) and the Whitsundays (isolated on a glorious yacht with friends).

I still laugh that on that first trip, I got to Cairns and ended up wound up in one of the first cases of tracked COVID in Yorkeys Knob (a town of just a cafe and yacht club, nothing else) and got locked up for 2 weeks, including the late-night police officer ISO enforcement visit. Seems surreal now.

Anyhow, I’ve done my own version of ISO in winter ever since whilst we were waiting for my plasma to catch up with COVID antibodies from donors, and because I’ve not been well enough to get overseas. But this year, with NDIS supports now in place, I waived the rejoin society during winter flag, wholeheartedly, for the first time in over 7 years. A few outings later, it seems I got struck with a triple whammy (SPS meets asthma meets infection). Not sure what came first, kind of like the chicken or the egg or the rooster haha

In hindsight, my PET scan (for the sarcoidosis) identified a partial collapse of the lower lungs, which can accumulate mucus and increase the risk of respiratory infections or pneumonia. Sounds worse than it is and is usually a pretty benign and common finding in my diseases, and can be just from lying down for such tests. But we now think it may be a part of my breathlessness issue and an indication that something was brewing.

So the key plot:

Saturday 20/6 came along, and Elise and I were set for a well overdue sit on the beach and an early dinner catch up. All was going well until it got a little cold on the beach, so we decided to grab one sneaky cocktail and then go grab our Thai. We’d just asked for the cocktail bill when my throat spasmed and closed over.

Elise asked if I was ok, and I shook my head. I went into my zone of focusing on getting through it using my mindset, sipping water and coughing. My left eye notoriously starts watering, so when the lady came back with the bill, Elise picked it up, and we later laughed the lady probs thought I was having a rough day…

Still unable to talk, Elise asked if we should move, and I agreed. Not long after, my voice came back, and we moved on to grabbing dinner and getting me home. Elise noticed smoke in the air, and then we determined it must have triggered the SPS, as environmental factors like that do.

It wasn’t until later that night that I realised my respiratory function was off via my spirometry readings, and then Elise checked what I thought was going on. We brainstormed half a dozen things and turned on Kids Life 360 so she could monitor me for the night haha.

Next day, Sunday 22, I was doing my daily update in my health App that I built and looking for trends and noticed I had woken a lot on the Friday night with a cough or SPS but had forgotten this intel. My poor brain. I’d also not had the usual frequency of physio due to one being off sick. So another trigger for an SPS ep.

By now, I also felt like I had a sinus issue, a sore throat or a torn throat muscle from the SPS. Multi-pack COVID tests were clear. But I knew deep down I was sick. So I put myself on stage one of my asthma and PID management plan.

I messaged my physio, who is also a trained medic and asked if she had space and wanted to risk seeing me the next day, Monday. Mostly to release my neck so I didn’t have a choking hazard. Thankfully, she could. She said she felt it was more than SPS.

By Tuesday, I was worse, and Dr Reece put me on my stage 2 action plan and booked me for reassessment on Thursday, or I was to call him if worse.

What we didn’t consider, and which is a new dynamic to learn: after 5 days in, the ‘stress’ on my body from the respiratory issue would then lead to SPS issues… so now it’s Thursday and I had my neurophysio putting out SPS fires all over the shop from simply trying to see my range of movement in my neck and thoracic. The simple movements were triggering SPS attacks. We had a vicious circle going. It was like whack-a-mole.

She also noticed my breathlessness had deteriorated since Tuesday. I was also very emotional and tired, so Dr Reece was again consulted. He got the emotional Loren (2 times in 15+ years now and both in the last 6 or so months!). He helped me process that I was emotional from being so tired, no longer match fit for infections and these treatments, having to learn how to manage the unpredicted triple-whammy, not being able to pay respects to the closing of SOS, but mostly, my burning desire to be well enough on the 4th of July for my family and friend visits. So, he put me on my stage 3, hospital-at-home program with high-dose steroids, nebulisers, and a secondary antibiotic to go with my everyday CF one, which we’d already doubled with no effect.

I was also pretty gutted as I’d done so well avoiding steroids with my prior “escape winter program”, but they are the necessary evil. He reminded me how well I’d battled so far when in the past I’d succumbed much faster. Another positive to reflect on and celebrate. And, I did feel better on the Friday for the aggressive approach, when my medic physio listened to my lungs for Dr Reece and said it was all very warranted as the left lung was not good.

What became very apparent, throughout all of this, though, was that Elise and I learnt that no one (outside my NDIS/medical team) really knows what to do if I have an SPS episode and particularly when I can’t speak and worse when my brain ‘glitches’. And apparently I’m very convincing I have it all under control haha. To be fair, I usually do after managing it for so many years, undiagnosed. But I’m also usually in my own environment or not distracted by other SPS triggers like a noisy restaurant, and I usually get straight into the appropriate treatment plan.

I think the key issue is that we now also know my cognition, working memory, decision-making, and dual-tasking can be implicated by SPS, so my brain had “glitched”, and I just zoned out and went into old patterns using my mind to beat it rather than the new approach to treat it. So this was a very good wake-up call and an opportunity to share more and ask for your help if you’re with me and something seems off.

So to help with this, I’ve now drafted a dedicated Quick Action Guide and Detailed Action Guide. Follow this link syncorswim.com.au/sps for feedback to help improve it. It will evolve, and I’ll add some pictures of what each treatment is, too.

I will be following a precedent from what my wonderful friend Peter did for me during our Fiji working era. Bless his heart - unbeknown to me, he took a Fijian and Hindi speaking team member down to the fresh produce markets before my first arrival and pointed out all my food allergies and got them to draft in their language my allergies to have listed on a business card in words and pictures for me to be able to hand to waiters in Fiji. One side Fijian, one side Hindi. That business card saved me big time!

So my new card will have the Quick Guide printed onto the business card for people to have and a QR code linking to the latest Detailed Guide (which will update automatically as I update it over time). You can also save this link to your phone homesceen too if that works better for you, or in my contacts in your phone.

As Elise said, this way I could have handed it to the waitress if I were alone, as they would have been oblivious to a medical emergency unfolding…. or Elise could have grabbed it and not assumed I had my shit under control and snapped me out of my brain glitch and got me on track quicker.

In rounding out the 2-week triple-whammy chapter, I’m doing much better since Thursday, so we’ve started the wean-down. We also managed to walk around the block, so the Nanny Farm Walker has finished this stint. Yesterday, my medic physio said the lung sounds clear again, so I’m back on track, just in time to see friends and family who are scheduled to be in town this weekend. Just a lower-key and fatigued version of me than what I’d dreamt of, given that recovery is still taking place. The physio and rehab squad have worked round the clock getting me ready. I’ll be crushed if the NDIS take their services away from me in my pending review. More on that next time.

Whilst feeling robbed for getting knocked down so soon, I was also gutted I had to cancel Hans visit earlier in the week, and then a team SOS wrap-up virtual celebration for 30 June.

It has been 16 years on Sunday 5/7 since SOS started. And ironically, we have never celebrated the key milestone dates on the stereotypical dates (eg., we had a 4-year 4-month party once when I was in hospital at the 4-year mark, so that became our trademark move). And then the year I had my 30th on my 31st, and now I always think I’m a year younger than I am haha. Plus a stack of other examples. So I decided this is another example of that.

I have always challenged: what is with these arbitrary “dates” we set for milestones or anniversaries or celebrations in life, generally? They don’t really mean anything, and we all put so much pressure on ourselves to acknowledge them “on the date”. The celebration is what means something, the stopping and reflecting, the being present with functional capacity to enjoy it. The date can wait. So we have now decided to celebrate post the last BAS submission if I’m able haha.

These are the ebbs and flows of taking on life again and joining society in winter. I’ll get infections again; I’ll be cancelling things again. It’s been too quickly proven, haha. But I’ll get back on the horse and try again and not let it dampen my spirits. Particularly because we had a great rebound recovery compared to my history. We also avoided my most hated drug and hospital. So that’s a huge win.

Moving on to other news, the PET Scan also identified a lump in my left breast, which wasn’t too surprising for us as I suffer from fibrocystic breast disease. However, upon BreastScreen Queensland reviewing the PET scan and my history and given I wasn’t symptomatic at the time of the PET Scan (and haven’t been for at least 6 months), they’ve escalated me to having a specialised ultrasound rather than a standard mammogram asap.

I let them know I’m putting out other fires at the moment, and whilst the nurse made me feel I was being irresponsible, she quickly readjusted her tone when I gave her a quick backstory snapshot of what else I’m dealing with (plus she could hear it on the phone). I’m not worrying about this but will be diligent and assured her I would get it done in a week or two when I’m feeling better.

With all the back and forth with Dr Reece and Dr Heiner this last fortnight, they want me to prioritise the echocardiogram and 24-hour heart monitor. The rapid change in heart rate and extreme random breathlessness remain, even after our big bang action plan that could have kicked it. And after the lung has cleared. So I’m trying for that in the next week or two as well.
Turns out there is no one-stop shop for the ultrasound, echo and heart monitor. Thank goodness for medical retired life.

And lastly, I finally got to see the “helpful” specialist (defined as not completely useless and harmful) at Mater Neuroimmunology MS Clinic (naturally no SPS Clinic haha).
My psychologist had helped me prepare, assuming I’d get an inexperienced registrar (they are always on a rotation with 1 month of experience in MS!); or the arrogant-hurried-couldn’t-care-less-dismissive-specialist.

So funnily my brain glitched when I got the good guy as we’d not prepared a template for that to happen haha My support worker had to step in and say, it’s really nice to see you Andrew, I think Loren just needs a minute to process we have you today haha Then I snapped back into gear and told him I was relieved to finally see him again and I was grateful. Using my inside voice, I was ecstatic to see all the pre-work on his desk, given the admin team hadn’t acknowledged the email at all.

To help prep for this appointment, the psychologist wrote a letter quoting the gurus in the SPS space and their papers linking SPS with my cognitive issues so they couldn’t avoid the topic anymore and gaslight me back into seeing a psychologist.

My psychologist has experienced my brain issues first-hand a number of times, and so has his boss, so they know it’s neurological in nature, and they have helped me change the way I use my clonazepam to get better brain performance when I need it to perform. They’ve also been managing my case at university. We laugh that he, my dentist, and his uni crew know more about SPS than my bloody “SPS specialist”.

The letter is shared on the new SPS guide page to help everyone understand what happens when I’m having issues with my brain (more focused on the conversational side than the mobility side). It’s designed for my medical and NDIS squad, but they’ve all said it would be helpful for friends and family too. In hindsight, it certainly would have been helpful for Elise on the SPS night, as she would have been aware I maybe did not have my shit under control whilst looking cool as a cucumber haha

I had my allied health support worker help me prepare a submission outlining the last 6 months of SPS issues, e.g., the 2 anal fissure sphincter spasms, torn adductor pectineus, choking incidents, yadda yadda yadda. We usually do this and take it on the day. But the psychologist got me to issue his letter and this letter as pre-reading, so the onus was on them to read and retain rather than just fob me off when listening at an appointment. Oh, and he got me to open the written update with my 12-week recovery after my last visit there, thanks to the registrar performing an MS spasticity test on my arm after I said my wrist was currently no good from an SPS incident. He said they need to be aware because the motto in health is “first do no harm” and so far all they have done is be my drug mule, with next to no help, only harm.
He also got me to reference the Maters Interventional Gastro, who had read up on the gastro SPS link and had concluded I was having sphincter SPS spasms, which require monitoring and collaboration on treatment if frequency keeps up. He said that will show how other departments and specialists are reading the research, want to collaborate, and are taking an active interest, and hopefully get them to step up.

Naturally, I was feeling a bit out of my depth and uncomfortable being assertive like this (as I’m trapped with them and there is nowhere else, so I didn’t want to piss them off and have them sack me), so we had written it all in a way to not sound accusatory or aggressive but factual, to simply help prompt them to help me better. (My psychologist, on the other hand, pretty much wanted to go in and rip heads off and report doctors to various bodies haha).

We also had a semi-breakup speech prepped and up my sleeve where I asked to simply get the hospital-grade meds and revert to tick-and-flick Telehealth, as everyone is wasting time and resources on these appointments. Ie they basically get relegated to just being my drug mule since I can’t get them elsewhere.

Perhaps this submission is how I ended up getting the good guy. He opened by saying how helpful the psychologist's findings and my written update were. He finally confessed they only have 1 or 2 SPS patients because, of course, it’s a 1 in 2 million disease. My support worker and I agreed later that it probably meant me and one other haha

He said he “does want to learn from my experience”. He then said he’d personally not seen me for two years, which was when I’d had the baclofen toxicity issue, and we moved me to clonazepam. Given I was using my breakthrough meds more often and having some tough incidents, and had proven that if I take a half tablet before needing my brain, I can get it to work, he recommended we up my dose to 3 tablets a day from 2. So we will see how that goes.

He said holding where I was for 2 years was a solid effort, but we couldn’t be upping the dose every 6 months etc as that path would run out quickly. He said we won’t wait 6 months to meet again to check my progress, but rather aim for 4, and he offered Telehealth given “the stress and effort of me coming to Brisbane didn’t seem good for my SPS”. I then pondered if I’d accidentally sent the semi-break-up speech by accident too hahaha


So as I wrap up todays post, I can celebrate that yesterday after my rehab and physio teams spent 2.5 hours with me, and after many days and hours over this last fortnight, they have said I've past their tests to see my family and friends :-)

I had to promise I'd follow their rigid pacing and recovery plan and continuing my treatment wean off with Dr Reece to the T. This is because they know too well I get a bit overexcited, can't help myself, and do too much and set myself back.

We all agreed that whilst I felt a bit robbed, this has been a remarkable turnaround and should give me hope I can keep dabbling with stepping out into society from time to time during winter.

PS I'm feeling pretty vulnerable sharing the level of detail in the SPS Guide and psychologists letter. I've always been very independent. But as a friend said recently, I'd rather you be vulnerable with your privacy, than left vulnerable in a critical medical episode. That hit home and is another step towards being flexible with my future self choices and being mindful of everyone's needs, not just mine.