Tuesday 20 March 2018 and life is relentless…end is in sight soon though, making progress

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Life is relentless.  Or it is when you are as unwell, and low energy as I am right now. Yes, that’s everyday for me, but even more so right now.  I guess I’m posting about my every day, because it’s overwhelming. It FEELS impossible.  But I know its not impossible if I break it down into bite size chunks, and don’t look at the big picture right now. Just look at what’s in front of me.

 

I also know that things will be forgotten, missed and there will be inconvenience. Today I realised that the biggest thing I overlooked was arranging the internet to be connected at the new property.  We’ll probably be without an internet connection for a week to 10 days.

 

Bugger.

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This is the worst-case scenario in my house. Gamerboy needs to game.  The Chicklet is a YouTube addict and she’s disobedient. I need to watch lots of videos for my Anatomy and Physiology course.  Fast, non-quota-ed internet is essential for us.  (yes, essential.  No it will not be a ‘good experiment’ to see if we can go without the internet. It will just mean misery.  Gamerboy NEEDS to game to find his happy place.  The Chicklet is same for YouTubing her interests.  I need to do my degree course.  We all need a fast internet connection to wind down.)

 

But its not he end of the world. I’ll use my mobile phone, and hotspots and I can get a mifi if necessary.  It will be OK.

 

There is so much to do that it doesn’t really matter WHAT I do, cos it all needs to be done.

 

I’m having to make a lot of phone calls, to solicitors, to utility companies, to schools…these are all important conversations, and they are all incredibly hard for me. Without the ability to ‘read’ someone’s lips, I cann barely hear at all. And despite me politely asking if they could just speak up, no one has time for that. It’s an incredible impost to ask someone to SPEAK SLOWER and more clearly. I get fed up with the kids mumbling at me all day, I don’t need professional services getting affronted because I dared to be hearing impaired, and I can’t hear them!

 

It’s frustrating, and confronting. I wish there was a way to identify myself as hearing impaired, and wish it was the kind of world where people would see my little sign pinned to my chest (or whatever) and CARE.  And want to help and realise that its not a big ask to just SLOW DOWN.

 

Part of the problem is I just can’t interpret words that fast anymore.  It’s neurological…my latest audiology report states that I have an Auditoary Processing Disorder or Central hearing loss. Which means that I can hear, but my brain can’t interpret or understand the sounds and make them meaningful. On top of that I have sensioneural hearing loss and a conductive component.

 

So its hard to hear and its hard to understand!  I have had several tiny strokes, and at least one more major one.  Left side is worse, along with my weak, numb and tingly left side, my paralysed left vocal chord, and all the other guff.   It sux.

 

It is also so hard for me to keep more than one thought going at a time. Where I used to be able to juggle several tasks, in fact it was my forte, now I can only pursue ONE thing at a time  OI , otherwise I become hopelessly confused.  My memory is terrible, I have to write every thing down, I’ve always been a list maker though, so that’s an upside.

 

I have a high end phone, because I’m a power user. My phone and my smartwatch are my brain helpers.  If its not in my ‘to-do’ app, it does’nt get done.

 

None of these apps are perfect, but I’m getting there.  I’m actually pretty proud of how im managing.  There is an advantage to being on your own and having no safety net, no one to catch you if you fall, or to pick up the ball when you drop it, or check that youre managing everything and pick up the slack.

 

You just have to do it.

 

And so I do.  It’s damn hard.  And its slow. And I have to work DAMN hard to make everything happen.  But I do.

 

And when I drop the ball, I don’t beat myself up. It happens.  Its falling off a horse, if you ride, you’re going to fall. The trick is to get right back on.

 

I got both kids to school today. I picked up boxes from the removalist company, because they are too hopeless to get the boxes to me.  I took the Chicklet to her psychologist and we all discussed things.

 

If feels like a huge relief to finally be able to say I have TWO kids with Asperger’s.  I’ve known it for a long while, but it was a secret, basically.  Because it was better for the Chicklet’s mental health to not know.  (If you lived with Gamerboy you’d understand). But now, life is easier. The Chicklet has acknowledged Aspergers and she’s in a place whre she is embracing it. She wants a formal diagnosis.

 

I went in first and ran it by her current psychologist.  She said that even though she’s only met the Chicklet once, she’d already picked up a few traits that were indicative of Aspergers.  She said she was thinking that way, of course, because her brother has Aspergers.  But she doesn’t know the Chicklet anywhere near well enough to do a formal assessment on her now. She suggested that perhaps it would be best to go back to her original psychologist to do the assessment.

 

Her original psychologist is the local area expert in ASpergers. She treated GAmerboy for several years and she is very good.  The formal diagnosis process is very involved, but I have promised the Chicklet we’ll do it. Just not RIGHT now.  I’m trying to get things OFF my list, not add them. But in a month, I’ll start that process. Despite the fact that its expensive AF, despite the fact that it will mean many more apporintments…the Chicklet needs this.  It’s the first step for her to explore herself fully, completely and understand herself better.

I’d be lying if I didn’t admit that I really don’t want to go through the process. Its hard work.  It wil bring out things for the Chicklet that I will have to help her through. It wil upset GAmerboy. It will piss their father OFF!  And he won’t contribute to the expense.

I do get resentful sometimes. Of course I do.  I am supportive and compassionate and I spent hours playing therapist to both of my kdis. And sometimes I just wish they were ‘normal’.  Now much easier life would be!!

I’m human.  Those are feelings I fight, and I never let the be seen.  But they are there.

It is hard parenting kids with disabilities or special needs or whatever you want to call it.

I’ve even had people tell me that its ‘easier for me’. Why is that exactly?  Cos I have the right temperament for it.  Oh really?

No. I developed the right temperament. I worked hard at being patient, and kind and compassion and empathic.  I developed the ability to sit up most of the night listening and talking.

Those aren’t born qualities…those are traits I’ve worked on and practiced. To be the best mother I could be, which is the most important thing to me now.

I did my exam today. I did a last ‘cram’ session and I sat the exam. I do not test well. I get intense anxiety and stress to the max.  But I did it, and I did really well!

I’m happy and relieved. I have been trying to NOT put pressure on myself to get high grades, but when I was at school my parents would accept nothing less than 100% or an A+. Anything less was derrided and I was punished.  A “B” is crap.  “98%” is CRAP, why not 100?. Work harder! Do Better!  On and on. Those habits were formed, and they were seared into my brain. I am telling myself constantly that a pass is well and truly enough – I am enough – but its hard work.   And a high grade still floods me with relief, even though the only one counting these days is me.

But I am happy.  And I give myself credit.

That’s something I’m always spouting off about – give yourself credit. No one else knows what you go through. No one else knows your pain. No one else knows the pressures you’re under. No one else knows what being upright and functional costs you.  No one but you. So no one else can realise how hard your working or what a fabbo job you’re actually doing.

Don’t wait for other people to tell you – tell yourself!  Tell yourself you’re awesome and you did a great job today, because you did. As long as you got up and did your best…even if you got up and realised that today you need to rest all day, because that’s the fastest way to getting upright again (slow down, we’re in a hurry), even if THAT was your best today, then you did awesome.

Tell yourself so.

Tell other people if you dare.  The people who love you will hear you, and back you all the way and tell you ‘you did awesome’ too. THOSE people are your true friends.

The people who look at you quizzically are still on the fence. They are potentially real friends, they need to learn more about you, spend more time with you, decide for themselves if they are willing to understand your world, your reality.

And the people hwo give you the eye-roll or say ‘Well, that’s not much you know’ or ‘You could have at least had a shower, doncha think?’  THOSE people are your frenemies.  You probably love them, and they love/hate you.  They might even think they love you but if they can’t support you, well, that’s not any kind of ‘love’ you need.

So, ignore them if you can.  Get them out of your life, if you can. (Friends yes, family is a bit harder).  But absolutely you must GET THEM OUT OF YOUR HEAD!

If you have to physically be near them, you don’t have to emotionally or mentally connect with what they say.  Learn to turn the off switch when they speak.  You’re rubber and they’re glue 😊

Back to the point though, this afternoon I also met with the deputy principal to talk about helping Gamerboy fit in at school and be happier.  He is so lonely and isolated, it kills me.  There has to be some help available. He’s also getting behind due to all his absence, and he needs support to catch up.

So they are aware, we all discussed the issue and there will be changes. They have a resource room he can access, and there will be help to catch up on his missed classes, his misses assignments and tests and help preparing for his first assessments that acutally count…next week.  It’s going to be hard work for him, but he can do hard work. He was defensive and disagreeable a lot of the time, but the Deputy and the resource room head  recognised it for what it is. Not nastieness, not lazinesss but Aperger’s.

More relief.

The also recognised that many of the absenses were purely because I couldn’t get him to school.  Its probably handy that I did in fact look like shit today.

So what didn’t get done?

No actual boxes were packed.   I’m exhausted and I’m resting. I’m also sorting out all my study materials and closing the book on Module 1.  Now that its done, I need to make it neat and easily referable for when I need to review for the final assessment at the end of the semester. ThAt work is best done now, while its fresh in my head.

I didn’t do any more study. It’s almost half way through the week and I haven’t started THIS weeks learning objectives. I will be more behind again if I don’t get on top of THIS weeks work, THIS week.

I didn’t start my oral presentation, which I would give anything NOT to do. I have the ideas, but nothing on paper. And I need to create a video presentation. Idon’t have the skills for that, and I resent having to put hours into learning how to put together a video with me in it, a voice over, and charts and references.  Pain in the butt!  But I don’t want to fail, so I’ll find a way.

I didin’t go to gym,

I am still feeling really sick. I have heart palps and my heart pounds in my chest often. This was happening BEFORE the 40mg of pred, but I guess its worse now.  I have ot see a doctor, I just don’t know when I’m going to do that.  My heart isn’t right. And my head is off too. I have all this ‘pressure’ in my head, and when I get up and walk around I feel nauseous, and unbalanced. I did fall today but not hard. I have passed out twice now.  I need to see a doctor, something is not right.  Its more than stress and anxiety, its more than prednisone. I know this.

I only had four hours sleep last night.  Predsomnia.  And I woke up because the pressure in my head was getting unbearable.  The my left side went to sleep, then the right side got tingly.  It was pretty horrid, so I did some stretches and got up and walked on crutches for a while. Then I had a cup of tea and studies. Might as well start the day at 4am.  I’m not even tired now…as in sleepy.  I’m bone weary, but I’m afraid I won’t be able to sleep.  Maybe I’ll get lucky. On all this prednisone, sleep is not going to be a big feature. Nest best thing is relaxation and lying in bed.  I’d like to do that now, but I’m not done yet.

No dinner was cooked either.  I’m hungry, but I can’t swallow well. Gamerboy has gone to bed early, which is awesome, so maybe I can have leftover potato and leek soup. Home made and goes down easy.

And then I’m done. Hard day. Again.

Tomorrow should be easier.  I’ll have to pack ten boxes.  I’ll have to read three chapters, but I don’t have any running around to do, no appointments.  The kids will have to spend a full day at school, I need  abreak from driving.

Oh except I have to go see the vendor. Perfect gentleman that he is, he’s going to show me around the house, and show me how to use everything.  So kind.  Puts a smile on my face and restores my faith in humanity.

Kind people trump the asshats every time.  Because we can focus on them instead!

 

 

 

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3 COMMENTS

  1. Hi Neen, well done first of all for even doing the exam let alone passing with flying colours with all the crap you have on your plate right now.
    I wanted to mention what I find helps as far as the hearing and concentration goes for me. I am bilaterally deaf, otosclerosis, & I also have trouble concentrating on more than one thing at a time, never used to I could also juggle like you, and retaining information and short term memory is awful, like really bad.
    Firstly I use Google assistant on my phone, like all the time. She remembers my apts, things I have to do, even something as simple as looking something up or doing a small job, or calling someone etc. She’s fantastic and I would get nothing done without her.
    As for the hearing issues I always try and use the online chat feature if there is one available for a company, so much easier than having to ask someone to repeat themselves etc and you can save a draft normally so you can go back over the conversation if you forget bits. If I have to call I make a point of mentioning my deafness right at the start so they know & they have to make allowances by law to ensure we can hear everything and have taken everything in.
    Those are the things that help me out, maybe you already use them but I thought I’d share as they have become invaluable for me. I also use the online chat to sort Dad’s phone contracts and Broadband packages etc too as he is also deaf and has trouble with processing too much info at once since a bad car accident (some uninsured idiot smashed into my parents car) several years ago.

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