Disability Payments

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After 10 years or more of realising I’m disabled, I’m finally going to do it. I’m finally going to apply for government assistance (benefits or welfare, you might know that as) so I can have some quality of life, and get some help for my various and debilitating care needs.

In time, I hope to be able to refurbish my house, so that I don’t have to bend–if I never had to lean and pick anything up, my back would go out less frequently, and I could reduce my reliance on strong painkillers, which would result in my having more energy and thinking more clearly. This would likely make a return to higher education more feasible, which could, in turn, eventually lead to a paying job that I could work from home (that’s the absolute pinnacle of the dream, anyway).

For my autism and social anxiety, I would love a service animal. I have never felt utterly terrified when stroking a dog, but I would need one that was incapable of jumping up, barking excitedly, etc, as my little girl is terrified of dogs… I’m only going to be able to afford an animal like that, if it’s a government-sponsored deal.

With a service animal, could I even work outside the home, one day? Not to spout a cliché, but stranger things have happened.

Most of all, my husband could feel better about his reduced hours at work (he went from working full-time to part-time, in order to help take care of me and my kids, also both autistic) and whilst he’s happy to do it (and knows we’re all safer with him here–they can’t physically attack me if he stands between us, etc) he worries an extraordinary amount about the money we have (or don’t have, really) coming in. If I could take a load off of his mind, I would consider that only fair.

He’s the reason that, for the first time in my life, all my short stories and blog entries seem to have happy endings.

13th January, 2019 (Suicide)

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I was on Twitter, today (never a great idea, when controversial topics are being thrown about…). I managed to read a beautifully written, poignant account of one man’s struggle to keep his friend from committing suicide.

He lost the battle. They both did, I guess–his friend had saved his life a year earlier, and they had leaned on each other for support, but eventually, it wasn’t enough for the older of the 2 men. Despite multiple calls each day, and lots of empathy and talking therapy, this terminally ill, soon-to-die man took the final step himself.

Most people who read the story were concerned for the surviving friend (especially as he’s also a pretty high suicide risk) but there’s always one, isn’t there? One person always stands up and tells everyone else why they’re ALL wrong, and someone did. “How can you all say this is okay? If it had been me,” they glibly Tweeted, evidently without reading any of the actual history between the 2 men, or the surviving friend’s tireless vigil, “I would have done everything I could, to stop this from happening.”

Well, no, sweetheart. You wouldn’t have. You would NOT have been on the phone multiple times a day, risking your job and your own sanity. You wouldn’t have given the unconditional, positive regard that lets people know they can really open up to you, without fear of judgment… the regard that has postponed so many suicides, and prevented some deliberate losses of life forever.

You sure as shit wouldn’t have given the guy a piece of your liver, so that he could continue drinking himself to death slowly, would you? No. Of course not. And if you would have, there’s not a surgeon in the world who would’ve taken those odds and performed the surgery. So… what *would* you have done?

My guess is, you would’ve shouted at this end-of-life liver failure patient to get his life together–about 10 years too late–and then, after screaming at him for 2 or 3 phone calls, you’d have washed your hands of it. All you’d have done, would be make a dying man feel worse.

Shame. On. You.

All the love in the world to the surviving friend, who put his career, his very new romantic relationship, and his own well-being on hold, to figuratively hold the hand of a dying friend who had done the same for him. This is what makes the world a place worth living in… people who can look past their own needs, and the fear of their own mortality, to be there for someone in the most dire of circumstances. This is what makes us special, among the other animals–the ability to communicate gently, with understanding, with compassion and love, in all kinds of extremity. We would be so much less than human, without the ability to love others at least as much as we love ourselves.

Everyone probably gets tired of hearing this from me, but if you need to talk to someone WITHOUT JUDGEMENT:

Samaritans (UK only): freephone 116 123
Samaritans email (Worldwide): jo@samaritans.org

Those are not only numbers for suicidal folk–most of the callers are lonely, anxious, depressed, at their wits’ end, self-harming, or even just old and isolated–but by all means, if you’re suicidal and want to talk about it, rather than being told why you just shouldn’t be, please contact Samaritans. The understanding really helps.

12th(?) January, 2019

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I can’t believe I’ve kept writing in this blog–however sporadically–until I now spend more of my time feeling “super” than “depressed”… it’s vaguely fantastical, to think that I can type that, today.

Not that I didn’t have a major episode of anxiety and suicidal ideation last summer; but those are par for the course, with me. The important point is that those are fewer and farther between these days, even if when they come, it’s always the same shit on a different day: sleeping 2-3 hours or less per day; perpetual feeling of terror, of something catastrophic that is imminent and unavoidable; self-harm just to switch my brain off and take a nap; the unshakable conviction that everyone I love would be better off without me; a return to higher doses of antidepressants and, if I’m lucky and have an understanding GP, a round of sleeping pills to reset the internal mechanisms that have sprung so wildly off their tracks… and then several weeks of that fragile, almost newborn feeling: not sad, not happy, but intensively sensitive and at the same time removed, as if I know I’ll never form proper memories of this time, and so I won’t have to contend more than once with anything that happens during it.

I’m thinking of returning to university, later this year. As it turns out, even a 1st class degree in psychology is good for literally nothing, unless you’ve got clinical experience as well (I have not). And aside from the suicide prevention helpline, I’ve not even found a volunteer post that’s related to my field of study… so. It seems I should return to the drawing board, as it were, and go from there. One question remains: do I return to psychology, or my first love–language and literature?

No one ever comments on my blog, but I’d love to hear anyone’s thoughts. Hit me up. And have a good January… I seem to be having one, somehow.

A Brief Bio, 3rd January 2019

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I posted this elsewhere, and I thought it might go nicely here:

As an adult (and during the diagnoses of my 2 children with autism) I realised my “quirks” were, at least in part, due to my undiagnosed autistic spectrum disorder. Struggling through a world made for NT folk has left me with serious anxiety, depression, and other issues; it has not stopped me from achieving a BSc, parenting my 2 lovely kids, volunteering for a suicide prevention helpline, nor getting married to my wonderful husband… but it can make me a bit much at parties, what with the run-on monologuing, misunderstanding of personal boundaries/private information, and debilitating social anxiety.

I have one parent and at least one sibling with Type I Bipolar; my other parent has undiagnosed HFA (never spoke until age 3; inability to grasp abstract concepts; special interests; uncontrolled mood swings, especially when outside routine situations; terror of social situations; trouble understanding the difference between private and public info; visual stimming… all traits my children and I share).

Luckily for me, my mom and I share a special interest (reading for both of us, and in my case, creative writing and journaling) and that helps me cope. I can escape into books, poems, short stories, movies, or videogames; and when the pressure is too much internally, I can write about my feelings and the effects of my ASD, which usually lets off enough steam to keep me coping.

Emotional/mental challenges are the bane of my life, but I’m also in limbo waiting for tests re: some physical symptoms unexplained by my anxiety or depression. In no particular order, the 3 things I would most like to know are: can anything make my sciatica significantly better, aside from pills I don’t care for; what would my life have been like, if I’d seen an autism specialist (NOT an ABA salesperson) when I was trapped in puberty; and will I ever finish a collection of stories good enough to publish?

I am recovering from a childhood and adolescence spent in a fundamentalist Christian home, with added elements of child abuse and psychological trauma. I practice mindfulness meditation, journaling (as I said above) and the fine art of trying not to lose my damn temper. Autistic meltdowns are *much* more forgivable in children than in plump middle-aged women who look relatively self-contained… right up until the moment the cup runneth over.

Christmas, 2018

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It was wonderful.

I was so, so ill, both on the day and for about 10 days before. (I’m still coughing fire, sometimes hard enough to wet myself… gotta love stress incontinence, amiright?)

New Husband Jake sorted everything out. I did a 2-hour shift on Christmas morning at the suicide prevention hotline, and then, I basically slept until an hour before the kids came back from their dad’s. (We alternate; it was his year to have them Christmas Eve and Christmas morning, and mine to have them Christmas afternoon and overnight.)

While I slept on the couch, Jake finished wrapping their presents, cleaning their rooms, rearranging furniture (including building new beds and hooking up new electronics) and he brought me coffee and cold & flu tablets when I finally woke up.

The kids–sometimes overwhelmed by Christmas–utterly loved their gifts, especially the lay-outs of their “new” rooms, and for the first time in my life (including my own childhood) I witnessed a Christmas with no child meltdowns.

I am so, so blessed. I have never been this happy before, and yet, I feel like overall, I am becoming happier.

I love you, Jake. I love you, Sweet Babies. Thank you for making this life worthwhile.

And Still Thankful, November 2018

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My father-in-law is coming over, tomorrow. He’s going to help my husband with some of the little and not-so-little tasks that have been making him insecure, and me rather cross, for the past few months.

I cannot express to you how embarrassed I am, at the thought of someone who lives in his house (desirable location, large and well-decorated, with a garden and several bedrooms, what an estate agent would refer to as, “finished to a very high standard–early viewing recommended” if it went on the market) looking at my house. Don’t tell me he’s family–I know he’s family–I’m still ashamed at just how much is wrong with this place.

I spent 6 years doing a 3-year university degree, around my wonderful, very autistic children, and for what? To still be stuck in this falling-apart house, awake at silly o’clock in the morning, trying to talk myself into not being ashamed of the fact that I can’t study full-time or work at all, whilst caring for my babies properly. Dad (in-law) is going to see this house, and I will figuratively die of shame.

But. But, but, but. Even if he judges me, and my husband, and even the kids, I have no doubt that he will help us. Not with infuriating platitudes or enraging advice; he will help with actual, hands-on, practical assistance.

This is more than can be said of approximately 95% of the people who have seen the inside of my house. What’s even more than that, I imagine he will offer the help more than once, until the house is in a reasonable state. At the very least, after tomorrow, I’m sure we’ll have a toilet that we can flush using the handle, and a drainpipe that actually attaches to the house, again. 

For all these things, I am thankful.

Still Thankful, November 2018

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When I wrote my last entry, it was on too little sleep and much too little reflection. There was still more to say–to my husband, and he had more to say to me–and the conversation did not, I assure you, read like my previous blog post.

It did, however, pass.

I love/loathe platitudes, especially biblical ones–they corralled so much of my childhood and adolescence, and their use is always faintly bittersweet at best, and genuinely triggering, at worst–yet I doubt I’ll ever stop using, “This, too, shall pass.” (Not found in the Bible, by the way; I checked; but commonly attributed to King Solomon, and it has a biblical/Abrahamic theism flavour, nonetheless.) I digress.

After the conversation with my husband (which took 24 hours, off and on, as well as a lot of crying from both of us) I feel like we’re on a steadier footing, now. He has to be a bit more grown-up, about living with us; I need to back off a little, and let him find ways he can pull his weight, so to speak, without my constant supervision.

He is delighted that we have a plan in place, now.

I am thankful that the plan was his idea.

I loathe making plans about non-leisure activities–things like housework are just there, why do you need to be reminded they need doing?–and the thought of spending any additional time thinking about housework, grocery shopping, cooking, banking, etc, when I spend 5-10 hours every day engaged in those tasks, plus safeguarding and personal care for the kids… bleurgh.

Hopefully, now, I won’t have to spend 5 hours every day (and often as much as 10 hours) trying to keep on top of things. Hopefully, now, I will have regular, un-nagged-for help; which will allow me to nag less and rest more, and Husband to feel more in control of how/when he pitches in around the house.

The kids will still be autistic. The house will still be too small, really, and not in great repair. But if I’m not constantly fighting a solitary battle to keep the house clean (we don’t often get as far as tidy, but clean I maintain) to keep the kids bathed and fed and comforted, to organise all the household bills etc, I think I will be more kind. Unrelenting (or at least, rarely relenting) kindness goes a long way, towards making cramped/un-ideal living spaces more bearable.

Keep your fingers crossed for us, friends.

Thankful, 22nd November 2018

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I had a fight with my husband, last night. I was nagging him off and on all day (Thanksgiving is hard for me–I live 4,000 miles from my folks, and haven’t shared a traditional Thanksgiving Day meal with anyone in about 15 years) and he finally snapped, and said some ugly things to me.

Nothing I said was remotely close to what he said. I felt like I’d been sucker-punched, and I just didn’t expect that, from him. We’ve been married a little over a year, and to the best of my recollection, this is the first time he’s ever said something so out-of-line, to me. (It’s certainly not something he does regularly–he is not generally a deliberately hurtful person.)

I am thankful that my husband saying something unkind to me, felt like being punched; I am thankful that I was so surprised, shocked even, that it took my breath away. I am thankful to be with someone who usually endures my moodiness and mercurial nature with such inexplicable grace and supportiveness, that I literally cannot believe it at first, when he says something genuinely mean.

I am thankful that my husband, who had work at 6 a.m. this morning, refused to go to sleep when I left the bedroom around midnight (I was far too agitated to go to bed myself) before we at least tried to talk it through. “Never let the sun go down on your anger,” and all that jazz… it worked. When we went to sleep, neither of us was angry with the other, anymore.

I am thankful that my marriage is made up of 2 people who, despite being personally very sensitive (some might say overly so) are also capable of putting aside those feelings, to extend empathy and understanding to each other. I am thankful that every time we have an argument, we make up, and usually learn something about how to improve our marriage or household or both, during the making-up discussion.

In lighter news, I am thankful for coffee, since I’ve had about an hour’s sleep, and the kids are at the dentist’s office later today… seriously. I have so much to be thankful for, and I am. I hope you have at least as much to be thankful for as me, and I hope you’re in the right place to be able to feel and experience how lucky/fortunate/blessed you are.