Blackness.

I am not sure why I often never feel good enough. Maybe it’s from having a father who hates me for reasons I still cannot fathom. Maybe it’s from feeling abandoned by people all through life. But it’s a real feeling I can’t shake. No one rallies around me to see if I am okay. No one bothers me if I hibernate, go quiet. No one is interested in me. I always second guess myself thinking do they actually like me, they can’t otherwise why do they not bother anymore. I am not actually good enough. I try. I try to be the good friend. Be the one who listens. But then I have no one to listen to me. I don’t want to burden others. So I shut myself away. Always doubting myself, doubting them.

Social media made me feel not so alone, but then made me feel even more alone. When I wasn’t as liked as others. My photos weren’t liked as much as others. People aren’t interested in me. I could disappear and no one would notice. I thought I was funny. But people aren’t laughing at me, they are laughing at me. The fool. The idiot.

 

 

Caitlyn and her stuff

It’s been a tough week, Caitlyn was diagnosed with yet another medical problem, Narcolepsy.  I thought I would list all of her stuff as she likes to call it. So, this is her stuff with brief explanations.

  • Complex Chromosomal Abnormalities – She has a deletion on chromosome 2, she has a translocation of chromosome 2 onto chromosome 3 and she has an inversion also on chromosome 2, which basically means it’s upside down. Phew. This complex set of abnormalities hasn’t been seen before in medical journals. So we have no way of knowing what long term problems there are, but this could explain a lot of her current problems.
  • Learning Difficulties – So yes, this could be related to above or it could be related to her autism. I don’t think it matters really one way or the other. She is running about 5 years behind mentally and academically.
  • Autism – Thankfully only moderately.
  • Dyspraxia – Things like riding a bike, being able to stand to dress her self etc are huge problems as are fine motor skills.
  • Allergies – She has quite sever allergies to nuts, almonds being the worst. She carries eip-pens
  • Asthma – She has never outgrown it, but learnt to control it pretty well.
  • Bowel Problem – She gets bunged up a lot. I won’t go into detail but takes movicol for it.
  • Epilepsy – Right temporal lobe with a tendency to generalise
  • Narcolepsy – Right now, we don’t know much or what the future holds but we will cope as we always do.
  • Cataplexy – Goes hand in hand with narcolepsy. When she laughs she often loses control of her muscles and falls to the floor. I often thought she was faking it till she almost drowned in Spain a few years ago.

Honestly, right now my head is all over the place. It’s a lot to take in. I have known about the last 2 problems for over 4 years and I’ve had to fight my case. They discovered her epilepsy and stopped looking and blamed everything on it. Her tiredness they said was related to the drugs she is taking. But I knew it was more than that. And finally at long last we’re on the right track. I have no idea what the future holds, whether she will be able to live alone or what her long term prospects are. But right now the only thing that matters is her. She is is amazing. I love her so much, I admire the way she copes, how she just accepts all of her problems. I just wish I was so accepting. It’s not bloody fair.

Dummy Detox

I always knew I would get rid of D’arcys dummies before she was 3. And Christmas seemed a logical time. Getting her to put the dummies on the tree, and Santa could come and get them. Basically I was trying to make it more magical for her. Cause those dummies were her life. She had 3. One in the mouth and one in each hand. Which she stroked her face with. It was never going to be easy taking them away. And as hard as it might be. I don’t regret for one moment her having a dummy. I am over the moon I haven’t got another thumb sucker. I only wished when Caitlyn was younger I gave her one and not think “Oh look how cute she is sucking her thumb” She wouldn’t need a ton of dental work now, nor her mother in her ear every 5 minutes shouting “THUMB”

I lost a friend over letting D’arcy use dummies. Ha. Yes I know. Ridiculous. But some people are very judgemental. She was my longest standing friend I’d met over the internet. But she deleted me from her life as I basically called her out and asked why she cared whether my child had a dummy. It was none of her business.

I wanted a special way for her to give her dummies up. So last night we hung them on the tree.

She cried a lot. It was almost like cold turkey for a toddler. BUT on the tree they stayed. I won’t lie. It was fucking awful through the night, she woke about 35 times. Crying, grinding her teeth, begging for her dummies. But I didn’t budge. I couldn’t as I actually threw them out before I got into bed. BUT we have got through the night. It can only get better, right? RIGHT?

This morning she had a lovely message from Santa’s Elf. For being such a BIG GIRL.

She was a little scared to look behind the curtain. But finally…….

Test(ing) my patients.

So, Caitlyn had a neurology appt today. To talk about maybe the long process of being weened off of her epileptic medication. She has been seizure free for a while. And me and her consultant are in agreement. No medication if necessary. She has spent so much of her life on meds we’re fed up with it.

Her tiredness is still a major issue. So, a plan of action is in place. Although like everything it’s going to take time. I kinda wish this was put into place 2 years ago. I don’t know why the waiting has to happen. I could have suggested these things needed doing back then. In fact I did. But protocol has to happen.

BUT she is to have a MRI scan [again] but not just any old MRI. She is having a 3T MRI which is basically the best of the best. Only a few machines in the whole country. And luck has it one is in Poole Hospital. It’s basically the high def of an MRI. It can look clearer and better at the brain. So that will be happening very soon, in the next month I’d guess. But then it’s Christmas. And all we do is wait so it might be in the new year now. The main reason for the MRI is to see if her brain is clear to come off of medication. The other reason, well, it’s to see if there are any growths.

Which leads us onto the lumbar puncture she will be having. Not sure when but soon. And the reason for this? To check nothing untoward is happening. We didn’t say the word, but we both knew where we’re coming from. Cancer. Although I am HUGELY doubtful. The tiredness has been going on for 7 years now. I am sure there would have been a lot of symptoms along the way if it was pointing towards that. Scary times ahead. But like I said. I am very very doubtful it’s that.

So, there we are. More waiting. But on the right path. Just wish this path had a conveyor belt.

The best broccoli. Ever.

So, I love broccoli. Like really love it. Not as much as green beans but almost. I wanted to try it roasted and searched the good old internet and found this recipe. I tweeked it a teeny bit. So I can’t take credit. But feel free 😉

What you’ll need

Broccoli
Olive oil (basil infused is awesome)
2x garlic cloves
Lemon juice
Grated Parmesan

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Just these few ingredients make the best broccoli you’ll ever taste

So take the broccoli and cut it into florets

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Drizzle on some olive oil (I use one infused with basil. Just cause) some garlic (I’ve cheated and have frozen. Mostly as I can’t be arsed to chop/mince) and a little lemon juice. Not loads. Maybe 2 teaspoons, then give it a good mix.

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And whack in the oven. 20 mins or so. 180ish.
Once roasted, drizzle on a little more lemon juice (again personal preference) and some grated Parmesan and voilà

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I added asparagus today. Also just as awesome.

Enjoy.

Did it vanish?

No is the answer to that.

So, I’ve not been paid for this, or bribed. This is me talking about the new Vanish cartpet cleaner. They’ve changed the packaging. in the hope it will attract the gimmick buyer. Well it did. ME.

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So, it comes in a bag that you shake all over the carpet/rug etc whatever. you brush it on and leave for 20 and then you hoover it all up and everything is vanished!!

WRONG. Other than smell nice it’s done bugger all. What a bloody let down. £6 I paid for this. I am gutted really. It’s my fault for seeing an advert for a powder you can shake. Like good old shake and vac. I even did a little boogie shaking it all over. I really did think. Genius. Genius idea. But really it was a crap idea.

So, this is my review. This product is shit.

The trying failure

4 steps forward. Always trying, always keeping on. Fed up with it. I have these lulls from time to time. I’m having another. They get bigger every time. Last longer.

I can easily say I have shit luck. I hate comments that say something like, oh maybe your luck will change. No it never does.
Round and round in circles. Nothing changing. Always the same.
Sofa is broken. What do I do when it completely fails?
Hoover is nearly broken. More expense.
So many things we need. No way of sorting that out. Some days I can’t even afford food. Desperate times. Always.
Things have not changed in 2 years. Not through want of trying. Please don’t patronise me. This has been my life for 2 years. 2 long hard years. I am barely keeping my head above water.
No winter shoes. Just winter blues.
Nothing changing. Always the same.
I need more time, time to sit down and try more. If I can. I try hard already. But jobs. I need one. So fed up with never getting luck.
36 and still single. Not even a date. I’ve tried.
That’s me. A trier. But mostly a failure.
Kirsty. Who tried and failed.