I'd had my cortisone injection into the c5/6 on Wednesday night (18/10 - last update).

I stayed at Elise's for supervison as I couldn't drive from the anesthetic. I went home for a bit on Thursday but decided to come back Thursday night since I hadn't felt great and my night sweats (been having them for quite some time) were out of control. She lives right near John Flynn so if things got bad I was in the right spot.

On Friday morning I said over breakfast with Elise I felt like a glass wall was around me... a bit removed from reality. I was exhausted... but so I should be, it had been more than 2.5 months since I'd slept right.

I felt like things were heading down hill.... and in slow motion… they had said at the hospital I might get worse before I get better after the cortisone injection... so I stuck with that philosophy.

By Friday arvo I was needing a nap, my teeth felt like they were going to pop out of my gums. This is a normal symptom (along with the sweats) that is a tell tale sign my HSV in lungs has flared up. I decided to give them a full blown blast for 3 days. Top level emergency dose. I needed to rule that out of the cause equation.

I tried to function Saturday morning, even took Cien's Nanny Farm up to visit Poppy Farm at John Flynn (my new favourite hospital!). I got home around lunch time, had a chat with Uncle Rob.... and then decided to lay down and didn't get up until the next day.

I got up Sunday morning as friends were coming over to put together my new fancy electronic convertible hospital bed (Thank you Janelle and Hope Therapy for organising the bed and Marzia & Rob for putting it together!! See video below!!). It was at this point I knew my cognitive was stuffed. I couldn't think straight and something was not right.

I remembered they were coming at 930, then forgot, then remembered, then forgot, then 7mins before their arrival remembered and in a panic recalled I needed to go get milk to make the coffees and a treat to eat and say thank you. That process was an ordeal... I got the milk, came back, then remembered I'd forgotten something, then finally remembered, went back and got the treat and then met my friends.

Everything was a daze. I couldn't get the coffee grinder and machine to do what was necessary. [Thanks Rob for servicing that before putting the bed together!!].

A few hours later the bed was together and I got in it and slept until late that night when Elise called. We decided I needed to call Dr Reece first thing in the morning to let him know about my extreme sweating, teeth pain, legs and arms and shoulder weakness, shocking bladder when laying down, and cognitive so bad I couldn't make a coffee let alone think about driving. Everything felt like it was shutting down.

Interestingly though, since the cortisone injection on Wednesday my breathing and cough at night was better.

Dr Reece and I spoke early Monday and once I let him know that I'd ruled out the HSV he repeated the symptoms back to me and then said I was sadly (highly likely) suffering from Baclofen Toxicity. And yes, my body was basically shutting down.

Not ideal as it had my SPS at bay for the first time in 7 years! But ideal in his mind as it was something easy to reverse, but would take time. We'd need to gradually wean down... you can't just stop this drug... as that also causes bad symptoms. He also explained that we could try 'hunting' for the right dose... like tuning in a radio station in a new town... we knew 40mg was too much... so we needed to find something on the dial between 0 & 40 that would work for me. And if none works.... well, we are back to the drawing board. But lets wean down, chat every day until I'm settled again. And we hoped my ideal dial would be 20-35mg.

Let's just say the wean off, along with the toxicity detox.... is not fun. It is going to take some time... I now don't know whats worse... the spinal injury, the SPS, the toxicity haha
What I do know, is that all of them together is a bloody disaster.

In the interim my cognitive issues means I'm a bit hit/miss with communication, responding to messages etc.

[PS I'm writing this across 2nd to 4th November because I couldn't use words before now... and lets just say, whilst we hoped I could stay on 20mg - 35mg... I've had to come down to 10mg.... and still not quite sharp enough to do anything complex.... and I'm still doing weird things e.g. found my freezer bread in the vege draw in the fridge.... but the fog is coming down, the sweats have stopped, my teeth are doing fine again, and my legs finally worked doing rehab on Thursday!!! Dr Reece and I've agreed to sit tight on 10mg for a few more days.]