It's been a hell of a week, and I don't mean that in a good way. Kye has been an absolute nightmare, he seems to be reverting back to old ways, but I can't figure out why.
The problem now of course is the tinniest bit of stress and my head starts pounding and that's my forewarning, usually that I'm at risk of passing out or having a seizure, which means I have to try and destress pretty quickly, not easy when Kye's seems to be on a one boy mission, to take me into stressagedon.
Perhaps that's where the problem is, last time I had a seizure from him acting out, he was so good, once it happened. I mean, it scared the crap out of him, naturally but he was very responsible about how he handled it, once I came round he helped me sit up, got my phone for me, so I could ring Dan and we were all really proud of him, because that's a lot for a kid to deal with, especially being here on his own with me when it happened.
Problem is, is he now trying to duplicate that situation, in order to again get that praise? Because that is how Kye works sometimes. He doesn't think in the same way that others do, of the risks etc, he just thinks of the outcome he wants.
That's why it can be so difficult to understand Kye’s thought process.
I’m also pretty lousy at following the steps we were given for managing Kye's behaviour. We're not meant to give him attention for any negative behaviour, just put him in his room, until he is ready to stop. But when he is like this, I feel like if I put him in his room every time, he'll never leave it. Because as soon as you go back to check and see if he is ready to behave, he just starts acting out again.
But I am desperate to find a solution before Wednesday when I have this extra infusion, because once I have that I'm gonna be exhausted for a few days, and it's gonna be even harder to cope with Kye's behaviour.
This is one of the area's I really struggle with my Crohn's, because Kye has Asperger's and CU, he's not an easy child at times. Now, I'm responsible for him, on my own through the day, because his dad has to work, so we can live, and because, Kye and School was a complete disaster. Making home school pretty much the only option, especially as I can't drive. And we live in a very rural location.
And we were doing okay with that, I mean don't get me wrong it's never been easy, because Kye is not easy, but it was working, we were figuring it out and he was back to getting good grades and blah blah blah. But, you know, I figured we already had enough to cope with, with that, without adding in all this Crohn's BS.
But here we are, diagnosed with severe fistulated Crohn's, cause god forbid I should do anything by half.
And having to make regular trips to the hospital, which is almost an hour away from us by car, for infusions and tests and blah blah blah, all of which Dan has to take a day off work for.
And suddenly everything is so much harder. I’m not gonna lie it’s a lot to cope with. A hell of a lot. But it’s got to be done.
I mean look at the stricture situation. I should have been in hospital. No questions I should, but I couldn’t let that happen, who was gonna look after Kye.
Now, my mum would have done it, but that’s not really a viable option for me, I have my reasons, it’s not something I can really say here, beyond there being someone in her environment, who has a very short fuse and has been know to not deal well with the sort of BS Kye can throw out.
Sammy of course is also an option, she’s and awesome friend and doesn’t take no shit, and would be fine to look after Kye, but her location would make it difficult for Dan as he starts work super early.
End of the day, there are options I just know that people are gonna be put out by them and I don’t want to put them in that situation, so I’d rather soldier on at home as best I can as long as I can, when possible.
And it was fine, I’m in remission again now and the stricture seems to have stretched. So all well that ends well, but at the time, with how much pain I was in there were times I was sure I couldn’t take much more. That I had no choice but to cave and go in, but I kept pushing through it, one day at a time, just praying the pain would end soon, and thank god it did.
Now, this infusion on Wednesday I’m assuming will be the same as the other as they are just giving me the usual dose, to top the one I already had up to the new double dose. So the tiredness and instability on my feet should only last a few days. But I am concerned about when I’m having the new dose all in the one hit. How long will that leave me exhausted for?
I already feel as if I am asking way too much of Dan and Kye. I mean Dan works all day and comes home and cooks, and he won’t listen when I say I can do it, which is really frustrating. On top of that he isn’t sleeping well for worrying. And having to take so many days of work put strain on the finances and as the only one working, that means even more pressure on him.
And this year we’ve not had the rallies, but how are we going to do them now if he is using up all his holiday time, on taking me to the hospital? The rallies are his way to unwind and feel like all his hard work was for something more than just surviving.
It’s just all so frustrating!
Then to top that all off my laptop has reached an age where it no longer seems to be able to cope with updated programmes and such. It even struggles to connect to the internet.
I asked Dan if I could have a new one for Christmas. At least new to me, it will be second hand because we can’t afford brand new.
But Dan was like, get it now, cause you need it, it can just be an early Christmas present.
Which is fine, but I know nothing about computers, and have no idea if the stuff I am looking at can do what I need or if the person is asking a fair price, or even how old the thing is.
Why can’t they just say this laptop is so many years old, it will play things like Netflix and is pretty quick blah blah blah instead of all the specification shit, that means absolutely nothing to me.
I just want something basic that will play Netflix, that I can do my blog posts on, browse the web, work on documents, and send my photos from my phone too. That’s it. And I have about £200 quid to spend. At a push I can always not be able to send my photos too it and do that instead to Dan’s PC.
Dan say’s he go to curry’s pc world while we are in Barnstable for my infusion and see what they have on offer, refurbished. Because at least there you can tell them what you need it to be able to do.
I would rather my old one be fixable, but Dan doesn’t think that is likely as it’s 11 years old now.
Well that’s pretty much it for this week. Sorry it’s a bit late being posted I did start it on Monday, but didn’t manage to get it finished.
Hope you are all well.
Love and hugs
Joss xxx
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