Stress. Let’s talk about stress.
I read a post by Jonniker today about teeth grinding and it wasn’t until I got to the end of the post that I realised I’d been grinding my teeth the entire time and for god knows how long before that. Hard enough to make my jaw hurt and my neck tense up and stay that way.
I don’t remember grinding my teeth before Nan was diagnosed with cancer, so it’s a relatively new thing. Relatively, meaning, in the last three years of stress and pain and grief.
And really, it’s a symptom of something larger, of stress that gets me so I’m either going to laugh, or have a nervous breakdown, or do it all simultaneously.
Amy started school 3 weeks ago now and it wasn’t until I had some time off that I realised just how bad this is. Things become facts of life and you forget that in a long ago time, you used to live in a house that didn’t have combination locks on the fridge and cupboard and washing stayed in the baskets it was put in, instead of being used as a step ladder to reach the freezer, or climb on the bench and scale the shelves.
It used to be that I could pee without wondering what chaos I would walk back in and find, or showering with the door open so that you can stop and yell that they need to stop sitting on each other and put the goddamned puppy down and NO you CANNOT drink the cream and PUT THE FACEWASHERS BACK and OHMYFUCKINGGOD, MILK DOES NOT GET TIPPED ON THE FLOOR, CAN’T YOU SEE I’M BUSY?!
I am sick of yelling. I am sick of everything being a fight, of tantrums and meltdowns and screaming and having someone attached to my front with their hand in my breasts constantly.
I am sick of the lying. Aren’t kids with aspergers meant to not be able to lie? Amy lies. Constantly. It is a hard thing when you can’t trust what your child is telling you. And Isaac, wow, he’s TWO! with a vengeance and spends all his time either screaming, or yelling, or trying to kill himself, or dragging me around to do his bidding. His speech is coming along brilliantly, but it’s still rote phrases a lot of the time. Although, having a child that says ‘no tankYOU’ and ‘yiss pleeeeese’ instead of plain yes and no is rather nice. Rote learning is great for manners.
We have his ASD assessment next week and I’m pulling my hair out because AMY! what the FUCK happened to getting Amy assessed? She appears to have fallen through the cracks and I can’t get hold of her paed. I had to cancel our appointment last week because of school pickups and our next appointment is in JULY. Fucking JULY.
I am angry at the paed for not doing the referral he promised, for not sorting out problems we’ve been having for over 12 months and for not being there when we need him. I think we’re going to just have to find a money tree and pay for private care.
It’s been tough. My joints are falling apart and while I now have an entirely new medical team working for me, I haven’t got an appointment yet and I probably need one. My ribs are refusing to stay put and while having a floppy rib cage doesn’t sound that bad, feeling like you’re being stabbed because of muscle spasms isn’t on my list of fun things to do.
I’ve dislocated all my ribs on one side just sitting to write this post and I think my thumb has gotten arthritis, because I’m losing range of movement and gaining incessant pain. We won’t talk about the pain crises that having my period sent me into, or the laxity that came with it, or the vomiting that topped everything off.
Good things are happening, but they’re tiny little shining lights in the middle of this sensation of drowning in stuff! and needs! and meltdowns! and bad behaviours!
We’re getting through by the skin of our teeth and we know it’s bad when Nathan and I look at each other and wonder how we’re gonna get through this.
In summary: I am stressed, things are hard, there isn’t enough chocolate and grief doesn’t get better, it just makes everything else harder.
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These vents sometimes make me feel better – I get it all out, release it and while nothing changes I often do feel a little better!
All I can offer is a virtual hug and much happy thoughts!
I’m not sure I’m feeling better, per se, but less alone, definitely. I am just tired of it all.
My situation is not the same, and I am certainly not suffering physically like you, but I get it. Right now I feel my head will implode with all the screaming going on in there. I just keep thinking 2 more weeks and I won’t hear it/them and I will have a bed to myself. 2 more weeks.
It’s funny, I’m not even looking forward to that, because I know I will have left Nat at home alone to deal with it, which will stress me out. They’ll all be fine of course, but it’s hard enough with two of us child wrangling.
I think the screaming is the worst part, really.
There are layers of grief here honey, Mum was really hands on and would have had Amy over for a sleepover heaps of times by now. I am not so hands on. I speak to you three times a day (at least) on the telephone and give you moral support but I am not the same as having Mum around as well, would be and I am sorry for that.
I am also sorry that I hear the stress in your voice but it isn’t until I read these posts of yours that I get a glimpse of how deep that stress goes.
Then there is the grief at all we don’t have anymore. All those lost possibilities for Amy and Isaac, that parents of neuro-typical children take for granted. Not so much the lost possibilities actually but more the easyness of neurotypical children. I grieve for easy. I long for easy for you.
Then there is the anger. Oh boy I have some serious simmering anger issues at the moment. I am angry that Parents of neurotypical children don’t get it. I am angry at those people at the supermarket who tut when Isaac is screaming. I am angry at those people who think that the death of your grandmother isn’t really proper grief and I am angry most of all that I cant wave a magic wand over you and fix your Ehlers Danlos.
I bought some Mars bars today, do you want one?
Mars bars would be lovely.
And yes to everything you’ve said.
I’m sorry, Veronica. You really are having a tough time of it, aren’t you? I wish I had a magic wand I could wave and resolve everything that is going on. I don’t. And you probably have investigated all the health care options available to you in the community. What about some emotional support through an organisation like Anglicare or OzChild?
Hang in there. Write it out. Scream it out. Take it a minute at a time. You can and will get through this
We should start up with Early Intervention for Isaac again soon, so the support will be there, it’s just in the meantime.
*hugs* There is never enough chocolate for all this stuff! Did you ever get the stomach medication? Physio’s theory is that floppy ribs/spine cycle only possible to start addressing when stomach floppy acid issue a bit more controlled. I’ll let you know if we find any actual answers for the control bit and not just what might be the cause
More *hugs* and lots of love, BG Xx
It’s in the works! A med that works both on the floppy/lax/refluxy stuff, but also works on the inner ear to prevent what is probably actually motion sickness caused by walking and moving (which would explain why I start to get very vomity as soon as I get in a car).
saw you mention motion sickness and wanted to mention that my GP put me on Transderm Scop a few months ago. Miracle. I’m not as queasy. I’m not walking into as many walls. The world doesn’t spin quite as much. The ground seems more stable.
That on top of the Nexium has been good for my tummy. Tho I don’t dare raise my NSAID dose no matter how bad the joints in my hands get.
As for the rest of what you’re dealing with…. *offers very gentle hugs* i can’t even fathom that much stress.
Just checking in to say I will have a supply of Mars Caramel for you in a few weeks time when we finally meet! (If you don’t like them I will keep them and EAT them all myself!) I know you are struggling now, wish I could do more than just send you love through the internet!
I am really looking forward to meeting you! And 1 or 2 mars caramels would be very welcome
If you are in town next week and want a shoulder to go ARGH FUCK SHIT on after the appointments let me know. I am working but can escape for half hour or so generally.
I’ll see, I’m not in there alone, so probably not, but we need to catch up anyway. I have your number in my phone anyway.
I’m sorry about what I read, I cannot give you any consolation, only know, I read your text and perhaps this can help you à little, knowing that I thinks of you. (you understand what I mean my dear!) Bises Grit
Thank you. xx
I don’t know how you do it! Reading what you have to deal with on a daily basis makes me think that if it was me I would spend a good amount of time rocking in the fetal position.
Somebody tried to tell me that respite for a woman with a special needs child was overkill the other day and I nearly strangled them.
Big hugs
It’s normally just a head down and get it done type thing. It’s been tough this week though.
Oh the screaming. It’s takes over your head and makes it so hard to recoup your inner strength.
I was very lucky because that was only a four year phase from my lil one.
It’s such a hard lesson to learn, that grief never goes away. I can say that after a few years, you get to a point where you don’t think about it for a few hours and can be happy. Grab every second of happiness, because you deserve it. I deserve it. Then cry again. *hugs*
The screaming is really awful isn’t it?
And yes, grief. Ugh.
Its small comfort I’m sure but i hope the blog venting helped a little? Better than keeping it all inside anyway… I wish you some peace in the chaos soon sweetie x
PS Nans are super special, missing mine so much too…
It did help a bit
Nans are special and I find it hard to be told that she was “only your Nan” when she was so much more than that. xx
Big *HUGS*!! I wish I had a much more grand gesture but that’s all I’ve got.
I’ll take hugs any day.
(((hugs))) Massive ones.
Seriously – get the melatonin. You will be *amazed* at the difference it has on all of you!
Sounds like you’re running on empty sweety. I reckon after the conference it’s time to sit back and try to relax a bit eh?
Really wish I could do more for you. Damnit why can’t we live next door to each other? Then I could have the kids sometimes, or even you could just pop over for a break. Sometimes having friends on the other side of the world SUCKS cause I see you struggling in times like this and all I want to do is HELP somehow.
Always thinking of you, you know that though right? xxx
Yes, I think a need a fortnight off after the conference.
I hear you. can’t type much for EDS reasons one of them something wrong with my eye.
But I hear you.
xoxoxxoxoxo
xxx Hope you’re okay.
I still can’t Marylin’s ^ posts about the Melantonin and the audio file on the screaming out of my head. It was when I heard that file that the penny slightly dropped concerning what “hard” is in dealing with non-neurotypical kids of this age.
Obviously no words are gonna make it easier. But you are making me think more and more about just how little support there is for “Carers” in our community (of elderly, kids, disabled people, sick people etc.) It is a vastly untouched community issue. We are not helping our own community enough.
Yes, Marylin’s recording was great for showing other people what the screaming is like.
ARGH ARGH ARGH ARGH!
Do you feel better?
Oops sorry, that just makes ME feel better.
If it’s not thing, it’s another. When I’m feeling the way you are now, I TRY to think,
‘At least nothing WORSE is happening.’
But sometimes you wonder how many worse things are actually out there!
xxx
I felt a little better, but I’m still stressed. Heh.
And the nothing worse? Ha. Hahaahaaa. Missing ducklings and a garden full of dead produce. Yay.
P.S You ARE doing a good job. Don’t forget that. It’s hard to understand the issues, or even to understand having two children which is apparently different to having one, but by wrting about it, you give people an insight into what it is like.
AND YOUR MUM GOT YOU A MARS BAR! YIPPEE! lol
Well, thats quite hard on you isn’t it ? Hang in , hang on and try to get a silent minute to yourself now and then.
one of my kids was quite the shrieker, she’s still loud @ 22.. i well remember the cabin fever feeling of constant tantrums and mischief and the noise..oh, Lord the noise.
I used music. If I couldn’t hush them..and some days I could not…I could drown out the miserable noise with music..headphones saved me many times.
I do want to say that from here..reading all of it..you and your husband are doing so very well at managing your difficulties. I know. Doesn’t seem like it to you..but..really..you impress me. Give yourself a treat for being an awesome Mom and carry on, it will all be ok, eventually.
I think it’s the cabin fever feeling that is the hardest, even when we’re leaving the house, it doesn’t really fade.
And yep, headphones are helping, lots.
It’s hard enough sometimes with three neurotypical kids and a chronic illness that’s not as pervasive as your ED. I do have one child who’s prone to anxiety, to the point of needing treatment, but also two who are entirely robust, “regular” and age-typical, whatever the hell that may be. They do, of course, still scream sometimes … but not all day, and not for hours on end, and we usually have calm and conflict-free mornings / middle-days (I cannot say the same, sadly for late afternoons, known forever in my household as Shit O’Clock). I can only imagine how much harder your row is to hoe with Amy and Isaac.
Even with my kids I have days (like, um, today) where it all feels overwhelming and I want to curl up in a ball and cry. So I offer you my heartfelt sympathy and my hopes that Amy being in school will prove some kind of respite for your weariness, and that the bloody ED cuts you some slack *real* soon.
Amy being in school is fantastic actually, a few hours off each week has been great.
We call late afternoons either suicide hour or arsenic hour. Heh.
Hi Veronica
I initially just popped by from AMB to check out your blog and follow.
But wow. What a powerful post. I so feel for you and I know my words are going to sound so painfully inadequate. I hope some relief comes soon.
I am writing my comment with no real back history of your situation, so please excuse me if I am way off the mark. We used melatonin with our daughter for a year (a long story. Not sure how similar to yours). It did change our world.
Eventually, after a year, I made the decision (not the docs) to take her off it as I felt she wasn’t “learning” to sleep on her own. It’s been hard…..but nowhere near as hard as what you are going through.
Big hugs, and much love. I will be sure to pop in again soon.
Trish
x0x0
Hi Trish and thankyou
Melatonin is on my list of things to do this week, hopefully everything will get easier when Amy is sleeping.
Ahhh hugs. I’ve had two days this week of sick girls home and I realised what a blessing having them at school is. I fell to pieces on Friday night and Ralph has been holding it together since. Thank god for him being home during the weekend to pick up the pieces.
I think it’s worse when Aspie kids lie because it’s harder to tell when they are doing it!
huge hugs.
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