Since the last post I've now had 17 support teams join the squad, on top of my 7 - 9 specialists. Basically I could field a football team with reserves haha. So things got a bit much trying to keep up with it. The irony. Desparately need NDIS help, and then everyone wants to help right away and I can't keep up and need to push back on the help! Didn't see that plot twist coming haha

Luckily I had good support from Janelle my OT, Elise and the MS Qld Psychologist (who was going to report back to my coordination team on some process improvements for complex patients like me) in trying to get better structure around what I need now versus later and helping prioritise things differently and spread out the initial engagements.

Each support were just doing their job and getting in touch to help now, which is fair enough, but not knowing how many others I was being bombarded with! It was consuming my life and not helpful in keeping balance with my drs apps and trying to do my routine daily rehab and some work, let alone anything social. And it broke my cognitive which was already broken haha

My psycholoist helped me understand most of her MS patients end up with 4 or so supports, but given the complexity of my situation (besides SPS, the respiratory, gastro and elbow bend drama), what started out ok very much became a spider web effect of more supports given the problems I'm facing.
i.e. one MS Qld Neurophysio appointment ended with another 3 MS Qld support gurus joining the squad in their niche areas (e.g. neurogenic bladder, word finding with speech pathology, overall cognitive strengthening with a dedicated cognitive OT). There are professions out there I didn't know existed until now!!

As the web grew, I had to work out what do I need right now, and what can wait! Cooking, physio, rehab and a driver to Brisbane appointments were prioritised and I'm chipping slowly away at the rest. Also impatiently wanting to get on with ALL of it to get better faster but reminding myself that my blueprint of learnings says doing them all at once was not a good idea!

I'm currently in love with my Chef. We've dubbed her the Iron Chef. My dietician gave me a list of high anti-inflammatory foods and antioxidants. I would never have known what to do with them. So I throw her a random ingredient. Next minute I've got all these foods using those ingredients in my life in a delicious way. A couple of friends have asked how I will cope the day she moves on, and it might be the hardest break up of my life, and I've had a few haha

Yolane (my rehab guru - ex olympic gold medalist swimmer for those interested) and Justin (my physio - she referred me to him and he's ex-AFL and Cricket Aus) are riding the waves of what each day brings. Each week I visit Justin on Thursday and Yolane comes on Tuesday and they've got no idea what they're going to get with me! And it's unpredictable. It's not like I can message the day before as things happen overnight. In hindsight I should have had Ang and Paul (Brisbane squad) join me with Yolane and Justin for a lunch party / handover / banter - oh and when this happens, do this!

Although, I'm not sure anything could have prepared Justin for experiencing his first startle response from me! haha Every week we do some work on my neck and we are chatting the whole time and I know where he is, but the other day, he went to touch my neck like normal, and out of nowhere I nearly flew off the bed and knocked him out. He jumped so far backwards and was startled from my startle and it was intense! We were both in statue position for a while before I asked if he was ok haha And he was like, are you ok..... WTF was that? Was that an SPS startle? That's off the charts!!! I told him to be thankful he hasn't had one of my kicks like Paul and Co got back before we knew my feet were my number one triggers!

So each week Yolane seamlessly adjusts our program! Not only for my physical but for my cognitive. Even on my worst days, we end up finding a way to laugh a lot. One week recently my cognitive was so off, I couldn't do the 4 step sequence (of a regular thing we do), and we had 8 reps of that. I didn't know though until I was in the 4th step and never came out of it. She's like, what are you doing back there, and I'm like waiting for the next step (position was intense on my core!), she's like back to the start. I'm like where was that again (whilst stuck in a position over working my core haha). We both laughed and she said, ok, seems today we are on a 32 step program for this one (4x8) haha And she had to talk me through the lot.

Later I was on the mat and she got up to go to the wall with the roller. After looking at each other for a while, she said, whats going on, I said not sure. I'd lost the ability to follow the social cue of meeting her at the wall. We agreed that was my last activity for that day given I couldn't follow basic social cues we'd done numerous times and rest needed to be the priority (I was off the back of a sleepless night of spasms).
Yet on another week we'd smash through things like I was training for the olympics and you'd have no idea of what I was suffering from. We are high on the achievement thinking this is the turning point. But, another wave of something shitty comes the next week and we are back to stretching and breathing only. We use both kinds of weeks (olympic ready Loren vs face slap) to work out what could have been the lead in factors to either. To put in the blueprint framework of learnings.

Justin goes through the same at his end. He and Yolane message each other with updates, but by the time I arrive its usually a different need so he adjusts in the moment. e.g. one week its just 100% calves (each week is 10% calves no matter what), another week just neck, another week its my liver that's stuck and he gets it moving, this week it was my left ovary and kidney all locked up onto the left rib cage and wall of my skin, like concrete. Between Yolane's stretching and breathing on Tuesday we got some movement and then Justin was able to get it fully moving again on Thursday. This in itself is excellent progress. Prior to my daily treatment I could have been stuck like that for weeks on end and it's a pain I can not work out how to express.... outside of your insides feel like they've linked up and turned into a brick and that brick is attached to your skin. So bending, moving, breathing is all harsh!

In each of our Tuesday/Thursday sessions we breakdown the potential triggers/causes for the things that happen (good and bad) and from there we are building our blueprint on what I can and can't (or shouldn't) do. Or if I 'choose' to do something I know isn't ideal for me, what the consequences are and build the blueprint for how the week that follows should look (e.g. kind of like planning in a hangover, you want to have fun and there will be consequences and its ok to choose to have the fun haha)

A few blueprint learnings to you can hold me accountable to:
1) Wear my loop ear plugs in any setting that could be loud or startling.
2) Happy moments are unknowingly in the moment triggering, so if I have a happy event or thing to go to, expect a spasm there, or that night, or the next day. Or a bad cognitive day or two afterwards.
3) My feet are my biggest hurdle overnight, so I'm getting a bed cradle to hold my sheets/blankets off them.
4) When you shoot hoops with your godson Jules, you need to set a timer and not get lost in the moment and shoot hoops for more than 15mins! haha. No regrets, but good learning I can't be the natural judge of time when I get lost in the moment of good times!!
5) Exit catchups or events before signs kick in and make sure the next day is free to recover.
6) Program the aircon at 17-19 overnight, every night, no matter what the weather report says, to help with voice box and neck spasms. Had 2 scary ones a few weeks back in one night and had forgot to put it on and the weather change was the trigger.
7) Start training for big outings/events to attend more than 4 weeks out e.g. I had a wedding and trained for 4 weeks by building up my length of time at outings that could be noisy and startling. I got there and loved it. But had to divert to point 5 when I had a cracking spasm in a professional group team photo. I'm pretty sure my eyes will look like I'm trying to hold gas in and Mik next to me will probably have shocked deer in headlights given she had her arm around me exactly on the location where it happened. hahaha This special day was worth it and I can't wait to see that photo or my one with the brides :-)
8) No driving days after night spasms, they definitely amplify my cognitive issues.
9) Do my torturous roll downs each morning and night, and my Balansit stretches on wake up and before getting into bed, and then my calf stretching device at least once a day. (See photos of the equipment). If I skip these, trouble comes.
10) Cycle every few hours if its a mostly sitting day. Just for 3-5mins. But multiple times.
11) Use heat at every opportunity of a spasm or rigor.
12) Keep a hoody in the car and a pair of pants to not get caught out and about and cold.
13) I need to plan at least 4 weeks out in pacing strategies. I was used to 1 week, maybe 2, but it seems the upcoming 4 weeks do determine how my 5th week is. Most of you know I'm not a planner so this is bloody hard work.
14) Know that a dinner out will make the following morning hard so plan the morning off.
15) Use hotels versus a balance of staying with friends when up in Brisbane. Aligned to how big the days are either side. i.e. I need to retreat to dead quiet after or before big days of appointments.
16) When you know you're about to have a big day / event, take a half SPS tablet during it even if you feel fine. Kinda like keeping on top of your Panadol before pain kicks back in! (a Jenbo special!)
17) When you watch Collingwood play, you need to take a half tablet 1 hour before the game.
18) About 37 others but this will do and if you can think of any I've not listed that you've witnessed, let me know because I no doubt forgot!

A few wins of late include:
1) Jules and I got to the NBL Blitz for 2 awesome games. This was a big deal for me. Loud, overstimulating, high startlement risk, emotionally enjoyable. Besides wanting to go, this also formed part of my training for point 2 below! Happy to report we had a great time and I recovered better than anticipated the next day.
2) Got to a wedding and loved it. Beautiful couple, ceremony, reception and venue. Was grateful to have my NDIS support worker to get me there and be on call to get me home right after the group photo spasm! Also happy to report whilst that night was rough the next day was not too bad. So strategies are working!
3) I had my first face to face client appointment in perhaps 4 years. Maybe more. We'd not met in the flesh yet! Hans and Carl can vouch for how much of a positive high I was on after this. Naturally this high leads to point 2 blueprint learnings above, but I predicted that and made a lot of modifications either side to account for it. No regrets there. Evidence my NDIS is helping me. Not sure what the blueprint rules for face to face appointments is yet... maybe 1 every 3 months to start!
4) I'm starting to feel like some catchups again. Trying for 1 call or zoom a week and one face to face catchup a month. This is a good sign things are improving. I've not felt like doing these things in years.
5) My disability parking sticker came in. Part of me can't wait to use it on the days that are hardest, in particular when I'm super sick or attending hospital vists and usually need to walk big hills and 1 km to get there. The other part of me is not looking forward to the abuse anticipated from onlookers received and reported by many in my invisible disability community. Suz and I look forward to be able to get back to some art galleries with it and a hired wheel chair (have you ever noticed at galleries there are no chairs, only those flat pouf seat things with no back or arms!!!) and Elise and I look forward to not walking kms to our fav lunch venue haha
6) The Corowa property development with Johnny & Cien kicked off! And Uncle Rob's technology at Hanson allowed me to track 'the concrete pour' in real time. That and Cien's photos made me feel like I was there :-)

These top 4 things would NEVER have been possible without the NDIS supports of late kicking in and giving me some energy and spoons back. So I'm grateful to be able to contemplate dipping my toes in the water of doing enjoyable things again.

Next steps with health apps etc:
1) Have reviews with SPS and CF in November.
2) Will have an admission likely late November or December at Mater public to check out my stomach, bowels, gastro pathways, fundoplications in tact etc. Will head in a day early and stay a day after as they don't use twighlight anaesthetic and given I've not had good post op experiences they want to factor that in. I've very overdue for this and hopeful it might give fixable answers to all my nausea and inability to drink more than 1 standard drink!! I now order 1/2 shots in my margarita's so I can have 2 haha
3) Have identified an issue with likely my kidneys, have 3-4x the appropriate urine output to input of water. Went through some tests last week and will chat with my doctor this week about the results and nuerogenic bladder guru early November. That day (should have been 2 hours tops) didn't go without "a story", mortifying during the day, funny now. Ask me next time we chat haha
4) Next NDIS steps will be working with the 3 cognitive people. Seems it's not just one! I've had the 3 initial apps but had to hold off on next steps whilst I prioritised the other supports first. There is consensus that I can work on it and get improvements, but there is also reality/acceptance that SPS does cause decline in cognitive and I'm tracking in my blueprint that after SPS episodes (regardless of how big or small) my cognitive does suffer the following few days. But as a win, one of the test results was not as bad as one I did with my neuro in 2017 (I was at the height of my undiagnosed SPS then!) so I know that I've been worse and that I can be better. That was reassuring. So I'm pushing to get it back on track.

So, overall, in line with Johnny's observations last post, I'm 'happy-er'. But a long way to go whilst I'm impatiently riding the waves of two steps forward and one or three back. The hardest days remain the unpredicted slaps after great days (like, just let me have a win for 24 hours haha), or having to say no to doing things I badly want to do because it can't fit into the "4 week pacing plan" thats already full, or I've just had an episode and know I now can't do something as it will tip me over the edge if I go, such as having to miss a funeral last week, or popping in to see some friends not seen in a long time.

It's dawned on me that I've not fully come out to the whole of society on my health, so to go to these events is hard in itself as its overstimulating generally, and then you add the layer of lots of innocent questions on repeat which aren't fun for me to answer and I know will then lead to an episode. It doesn't help I'm not a good liar.... "its been years, how have you been?".... "great... how about you?" haha Plus, some days, these days, its damn obvious something is wrong with me and I can't hide it like I used to! I'm still to write the blueprint for these settings but at least getting into social situations is slowly becoming something that can be back on the table, from time to time! That in itself is a plus and a matter of a couple months ago was not something I saw possible. Thats a good wave to be riding!