#nobody's fault here i swear its just not stable rn...

[shinyshade8026]

i always brings her to my room at nights,, she likes to act like this her room,

Awww, totes cute!!!

[incurableoptimistest1994]

So, you’ve probably all seen that right now I’m having a pretty shitty time. I have not been in the right place emotionally or physically to share my latest plot twist, and I’m still not really, but here are the basics.

Last Thursday, whilst I was staying with my parents in Swansea, my suprapubic catheter blocked. We tried to change it, but couldn’t get it back in. We were rushed to the surgical assessment unit, where ironically someone who works with my specialist urologist treated me. Despite masses of drugs, determination, swearing and screaming, we had to accept defeat. My catheter site in my tummy had closed. The drs were shocked it had worked at all for the last few weeks, since the incident with the guide wire. They were also shocked I’d been up and walking around; the site, and my bladder, is incredibly traumatised. It was full of damage, granulation and scar tissue. Because I literally cannot urinate without a tube, they had to put an indwelling urethral catheter in. It was horrifically painful, but thankfully it’s working great, for now. However it presents a multitude of serious issues... and this entire situation raises lots of serious questions for my future. Previously, bladder removal was an option on the table, but we had time. We had time to think, to try other things, and I had a quality of life. Now, that time, that quality of life, is vastly diminished. Bladder removal is pretty much my best and only option at this point. I do not say this lightly; there is a very high risk I will not survive the operation. I know it’s not a quick or easy fix; it’s a long, painful, difficult, terrifying fix. But it’s a fix.

To really top things off, my Botox in my bladder has worn off. This is enough on its own to render me a non functional mess. Combined with the healing bladder trauma and literal hole in my tummy, plus the adjustment to the new tube, I have been in agony. We have had to increase my meds. I’m still not very functional rn; I have terrible brain fog caused by the pain and the meds. Everything hurts, and my mobility is limited.

And the final straw? After watching my documentary, my palliative care team have confirmed I’m suffering extremely severe chronic spasms (yes, more severe than they even realised)... but they have also informally diagnosed me with an incredibly rare form of epilepsy, where you are awake and aware during extreme seizures.

This is both good and bad news, to me. Good, because perhaps now they can actually treat the really big, horrible, life threatening fits/spasms (it’s likely they drive/cause one another, and the reason I’m sometimes so poorly is because I’m fitting and spasming at the same time.) better. It’s bad, because a part of me is just SO ANGRY that nobody found this earlier. I’m not cross at one person, just at the situation in general.

We will not be able to start the anti epilepsy drugs for a few months, til my new anti spasm drugs are stable.

I am just, spectacularly angry with the universe right now. And I am sad, and scared, and in pain.

It feels like so many options for my future are being taken away, and so many choices are being forced.

I am not okay right now, guys.

I am incredibly grateful to my absolutely amazing clinical and care teams, who have gone, and continue to go, above and beyond in their care and support of me. I am incredibly grateful to my amazing family and friends for taking such wonderful care of me (as always) and for making me smile even during my darkest moments.

I have a neurology appointment today, Paliative care in a few weeks, and my appointment with my specialist neuro-urologist on 1st April. Decisions and plans will be Meade over the best month as to where we go from here.

I am going back to see my psychologist today. I need the support if I want to get through this with my already wobbly sanity in tact.

The one good thing I can see is that, possibly for the first time in my life, I have felt safe and able to reach out to my loved ones for support; or course, they have always provided it, but historically one of the worst habits my mental health had caused me to develop was the need to pretend I was coping, and shut my loved ones out. I hated the idea of hurting them with my pain... I still do, but I also know that I hurt them more when I go all love wolf and shut them out.

So to the people making this dark time not just bearable, but beautiful, thank you, with all my heart. I love you. The words are too small, but they’re all I have.

Right now, I keep feeling like I’m in a long dark tunnel, and it’s feeling very difficult to see a light at the end. Blue, very wisely, said I need to think of this period right now as an end to a means. It is just one step, not the whole staircase.

It’s very easy to fall back into negative habits of self doubt and self hatred, but I am trying very hard to remember that a) this is not my fault, and b) I am trying my best. The outpouring of love and support following my documentary, The Incurable Optimist, has encouraged and supported my hard earned self worth.

So, that’s where I’m at.