Voicelessness and Emotional Survival > Voicelessness and Emotional Survival Message Board
What gives you your sense of self worth
Twoapenny:
Hi Lighter,
It's epileptic seizures they think he's having: non convulsive status epilepticus is the proper medical term, I think, so he's basically having hundreds of small seizures one after another for, on average, about twelve hours at a time (unless we can get the meds into him so this last Sunday he'd been like if for about three, three and a half hours before it started to wear off). They call it non convulsive because it doesn't look like anything is happening; to anyone that doesn't know him he just looks like he's very tired (almost as if he's been sedated). Because he's got different conditions he's classed as having 'complex needs' and this is where the problems start with treatment. Although the NHS is free at the point of use they're all on tight budgets and have strict criteria for who does what which varies from one area to another (as they're all run by different trusts). All of my son's problems are neurological and it's difficult/impossible to know where one problem ends and another begins, but each of his different diagnoses comes out of a different pot of money. This means they all spend a huge amount of time referring him back and forth to try and avoid paying for what he needs, plus sometimes he has to go to a specialist hospital out of the area which no-one wants to fund so trying to get that organised is a nightmare as well. It just means everything takes so long to do and you have to fight every step of the way, plus I have to know what he needs so that I can argue my case for it but that means I have to do all my own research because the docs keep me in the dark as much as possible. So it all gets very tiring.
So I have been practising what to say and keeping calm! I've emailed the doc a list of my concerns in order of importance and there will be more things I want to discuss so I'll send those in in advance of the appointment and hopefully it will be a useful hour of both our time instead of most of it being wasted. Hopefully this will be the last push now, I think we've exhausted pretty much all other avenues :) x
lighter:
Bless your heart, Tupp.
I'm rooting for you, and the best possible outcome for your son. You're a great mother.
Lighter
Twoapenny:
Thanks, Lighter, and the same to you!
He's doing alright again now, I've had a bit more info from another doctor that's helped put another piece of the puzzle into place so we're slowly moving forward.
We're really settling into our new place now. I started clearing the garden yesterday. It's huge and a little bit neglected but not terribly, just needs a tidy and a trim to get it back in shape. It's very mature which is lovely and I unearthed a patio when I started clearing leaves up. It's very uneven and some of the slabs are broken but in my mind I can see a lovely seating and eating area where we can watch the sun go down and enjoy listening to the birds singing. I sat out there for a while last night as it got dark and there were two robins chirping away to each other. It was just so lovely. So the new place is helping me stay level whilst the medical situation gets sorted and we are keeping on keeping on :) x
lighter:
Tupp:
I feel it's important to pay attention to nature and new surroundings..... to really let them sink in and help you change how you feel about your world. IF you bring your old thinking, and way of being WITH you..... you miss the chance to transcend them, IME.
Maybe every morning when you wake reflect on what you want that day....... think it or say it out loud, and then do it.
You don't live in the old neighborhood anymore. You live in a better place, with people who wish you well, and want you to be happy with your son. Engage them. Open yourself to new and better things.
The way you write about your garden makes me picture lichen and moss and stones covered in dark earth...... old and wise but new and welcoming for you and your son. BE in the moments there..... let thoughts of the old go by without grabbing on to them. Return to how it feels to be far away in this safe hopeful place.
Really BE present since you've waited so long to get there.
((((Tupp and Son))))
I really loved reading your update.
Lighter
Twoapenny:
All very true, Lighter, it's funny but things are falling into place without me doing anything. In the past I've worked so hard, so many times, to change things and it just hasn't happened (or at least not in the way I thought would be best). But everything here is just falling into place.
The garden is a mature, well grown one and people have obviously put a lot of time in over the years. There's something magical about it, it's not really overlooked (there are other gardens around it but there are trees and hedges as well as sheds and green houses so you can't really see into anyone else's garden unless you really try to). The fence is all different in places and I like that, some's proper fencing, some's been made out of fallen branches, some out of old pallets, I like the way different people have patched it up over the years. Feels lived in, rather than created for effect, if that makes sense? I'm making a list of all the things I want to get for the flat now to decorate it and make it our own and all the little jobs I want to get on with. It's exciting!
There are so many more opportunities around here for things for my son and myself to get involved in so I'm going to look into those after Christmas. I've also found a town within a reasonable driving distance that looks like it contains a specialist college for my son and an adult learners one for me so I'm going to look into that as well. Be great if we could both start college at the same time.
All in all it's fabulous and I am starting to morph into myself, I think, rather than being 'Tup who has to cope and get through the day'. It's nice. How are things with you? x
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