Compromises

Living with ASD means never having any expectations, not getting angry if your plans are killed dead in the water in the last minute, waiting for conflict to pass or meaning you do nothing on precious days off. So many trips & days out cancelled, so many lips bitten…..

Advertisements

Guilt fest..

We sat up talking until 4am,

The same questions, “what do I do to change so it doesn’t happen again?” “What do you do to change so it doesn’t happen again?” “What do we do to change so it doesn’t happen again?”

“I don’t know”

Today the guilt, the depression, the malaise…

Bad trip..

Have just spent the past 3 hours out in the car looking for him after he walked off with no phone or jacket into the rain while I was vomiting in the bathroom…

We went to the city today, I drove, I’m not supposed to do long journeys as I have nystagmus but because he’s not driving at the moment because its winding him up & makes him anxious, I drove. This means he sits behind me the whole 2 hour journey telling me how to drive. I respect his wishes of keeping my distance between us & cars in-front, but it’s never good enough & his constant back seat driving makes me anxious & I low concentration because he’s talking at me. By the time we get to the city he’s frazzled & so am I.

He calms himself down & we set to do the main thing we wanted to do which was primarily get shoes for our son to go back to school. My wanting to go the the museum to see a photography exhibition goes out the window after we spend an hour in a book shop while he looks for books. We decide instead of rushing to museum for 15mins that I will come again & see the exhibition, I’m ok about it. So we decide to have something to eat & make our way home. We go to another shop for him then the Japanese restaurant he likes, all his s well I think, then to the car park. The real trouble starts here, when I get in the passenger seat, as it means he’s driving, we agreed this before we left this morning, but he says he’s ok & we depart. We get to the motorway & he’s driving really fast & really close to cars in front of us. I say maybe he should pull back a bit, he says he’s “in 6th & the car wants to go”, I say “I know it’s hard to not go fast in 6th”, he takes this as me taking the piss, having no a dig, tit for tat & loses it, he pulls off the motorways the next junction which happened to be a services, shouting at me all the way, calling me all the bastards under the sun. He stops in the services gets out of the car & walks off. He comes back 5 mins later demanding cash so he can get a bus, I tell him there is no bus to where we live & I have no cash anyway. He walks off again shouting how he doesn’t want to be “anywhere fucking near you, it’s over I’m not taking anymore of your shit, you don’t understand me, all you do is take the piss” & goes into the services. He then comes back opens the back door & gets on the car telling my son to sit in the front. I’m driving home. I drive off, I’m so flustered I miss the turn off for the motorway & have to go around the round about again, at this point he tells me to “stop the car”, he’s getting out, I don’t stop the car. I drive home as quickly as I can in complete silence the whole way trying not to break down in tears but I’m so upset that as soon as we get home I have to run to the bathroom to vomit. While I’m in the bathroom he’s got out of the car & walked off up the road, I don’t know this until our son comes in the bathroom & tells me “Dad’s walked off up the road!”. Now this road is a 60mph country A road with no pavement & no lights, he’s stormed off with no torch, no phone, no jacket & it’s raining & getting dark. I, on hearing what he’s done, immediately get back in the car & go look for him, I spend the next 2 hours looking for him, I come home & son is distraught, I send him up to the tent to check if he’s up there, he’s not, so our son comes with me, I leave his phone on the sofa & we go off in the car to look over in the woods by the river for him, which is the only place I can think he would go, it’s pitch dark now. Son & I search with torches but there’s no sign of him so we agree to go back to the house, check if he’s home then go look around town again if he’s nowhere to be seen. All this time I’m thinking who do I call for help? No one. Do I call the police? Do I, god forbid, call his parents?? What do I do????? As we leave the woods I tell my son to text his dads phone just to say if he’s home please can he text back so we know he’s home as we’re out looking for him, as we pull up to the house my son gets a text which is just random letters but means he’s home. I park up after 3 hours driving up & down & around a 4 mile radius look my for him. He’s in his room. My second m & I go up, I ask him if he’s ok? He just growls at me “go away & leave me alone” I leave the room go downstairs & pour a huge glass of wine which I down in one. I’m relieved he’s home ok, our second n is relieved he’s home ok to the point he’s in his knees thanking Jesus, we’re not religious.

What happens now?

Oh and it’s his birthday tomorrow.

A change is as good as a rest (but can also remind you that what you are going back to actually makes you ill)

He’s been awful, locked away, paranoid, until we went away to a Math rock festival for 3 night where he became a different person, I’d booked it over a year ago & it was the second time we were attending, so he knew what to expect. On the other hand I became a OCD nightmare, starting the weekend with an anxiety over if I’d locked the front door & the house getting burgled or burning to the ground because I’d set a timer for the lamp in the living room which was bound to malfunction & catch fire. He got me through it, throwing every CBT trick in the book at me & reminding me that the only important things were in the car going on a weekend away so if anything did happened, then schmeh, so what! He calmed me down for a change… we had one incident with in over zealous vindictive security guard who insisted on checking his bag, no one else’s, every time we walked passed her which elicited in him a sense of persecution triggering his ODD, which lead to him voicing his complaint to the head steward who instantly recognised his condition, apologised & gave us VIP passes so we could access the side of the stages & the VIP bar which was quieter & easier to get to without the security checks all the time…We had a great time. The mood was maintained for a whole 3 days on return, then the enormity of my stupid situation with a friend & his paranoia over his parents & where we live hit home 3 fold. I was depressed because of my ousting & frustrated with my situation & his, he was depressed because we were home & the situation hadn’t changed & I was miserable. I had to promise never to go into business or help friends with business again, that that’s not who I am anymore, I haven’t been that for 20years proper but keep getting dragged into these scenarios where my previous incarnation appears. He has promised to not be so negative because it’s a cyclical reflection of doom in our house.

In readiness we are making plans for how to survive in this place until our son leaves school & what we can do to keep us active & using our brains without killing each other through frustration & circumstance…. I’m trying to plan a few days away next week to get some distance from the house again but we will see what happens. The change was great, the coming home not so much.

GREAZY ……

I have, over a period of the past 18 months, been creating a brand, a business, with a friend (I now use that term loosely).

I poured my heart & soul & all my creative juices, forsaking a lot of my husbands needs & my own side line business distraction in the process. I created a successful brand, it is now already recognised by my branding & a fledgling in its field, my “friend” has taken it, used it built his business on it & has shut me out, putting all the business into his wife’s name & not giving me anything. I’ve been used, deceived & betrayed, I have not been paid a penny & am out of pocket for materials but mainly out of pocket on trust.

I’ve found it incredibly difficult to accept my ousting, I’m mourning the loss of my creation, my beautiful imagining & words stolen from me, my trust of people, self worth & self respect have taken a beating. The majority of my depression & moods over the past months have been due to my frustration & anger at my lack of recognition, the situation I have been put in & put my family in trying to help out a friend.

Tonight should be my busiest night, i should be doing shout outs & media post, b cause they are opening tomorrow but where I once was it’s voice is now a failing silence in their promotion because I was shut out. I have hung on too long, I should’ve listened to my husband, who with the benefit of logical thinking & cynicism of everything, read what was happening before I’d even started anything. A perfect I told you so scenario has developed, but he’s not snide enough to say it but my involvement has caused many an argument & red zone. I am now at the point of accepting I am not part of this exciting new experience & I can only be a carer/wife & cannot explore avenues outside these roles as it causes too many problems in our house. A compromise I will have to live with….at least the arguments about it have stopped.

Camping part two

He’s back at the tent again, my fault this time, I was wound up, I was on my laptop which is a trigger, then I got wound up because the laptop wasn’t working, which is a mega trigger, & then I got wound up driving in the rain, another trigger.

The irony is that we went away last week camping and had a wonderful five nights away as a family, something that has been missing for the last six months or so. Before we even got back home he started getting wound up and spent the rest of the afternoon on his own in the garden because he was so wound up. He then had a massive rant at our son yesterday because he wouldn’t jump when he wanted him to and also because our son was afraid to say no to him in case he got wound up. It’s been a while coming but it’s been coming. Getting worse. I don’t know what to do.

The stuff he shouts at me makes me feel awful and sad and depressed. I believe he says I believe him when he says he hates me and can’t be around me and wants to leave. I believe it when he calls me stupid bastard, stupid cunt, fucking arse wipe, how he should’ve left me 16 years ago, how he should’ve gone then. Maybe I should’ve left the first time he raised his voice in anger at me, maybe I should’ve left then? That was a long time before he had a diagnosis I still stood by him, maybe that’s just me, The reason I was wound on the laptop was because I had to write out a statutory declaration of name change for a meeting with a solicitor in the morning which involves my first married name which always give me anxiety anyway but he doesn’t get this, he just sees me getting wound up over the laptop, Says that it’s just another excuse that I won’t recognise I have a problem with the laptop. I do have a problem with the laptop, my laptop is so slow and doesn’t work properly and now worse than it was. But I am not allowed to get wound up, I must bite my lip, I must smile and I must keep calm.

I used to not listen to what he shouted because I know it’s said in the heat of the moment, now I don’t think it is said in the heat of the moment, now I think he really means it, now he shouts finding a place to go is a priority, a place he can go away from me. It’s hard to tell if it’s real or not, it feels real. He said last time if I did this again and got wound up about the laptop that he would leave me. He says this makes him hate me and it takes ages for him to feel love for me again but I don’t think he knows what love really feels like. It never feels like he really loves me, it feels like a mechanical empty gesture, Something he thinks I need to hear because emotions are difficult for him and expressing them even more so apart from anger, rage & depression. I can’t even have a glass of wine to make myself feel better because he has gone up the tent with alcohol and I have to pick our son up later. So I will just sit here waiting for him to calm down and come down but I don’t think he will this time. I think he will sleep up there tonight.

I am becoming more and more isolated as is he, I’m not going out with friends, I’m not seeing family, I’m not talking to anyone else apart from him and my son, I don’t think it’s doing us any good.

As his wife this is all very painful, as his carer it’s just part of the job. The lines are blurred.

Camping…

He’s run away to the woods. Taken himself out of the home & camper hid himself in the woods behind our house.

He slept there last night, this is the first time in 19 years he has decisively removed himself from our home, to be apart from me & our son, to be alone. Usually it’s to his music/red zone room or to the sofa, never has he been outside the house.

I feel like a huge shift is happening, that he’s going for good. His mind is such a scramble of paranoia & anger stirred up by his parents constant forced contact & interference. They are killing him & destroying his idea & reality of his own little family, him believing he is destroying that too by his actions & outbursts and they have no clue. Should I intervene, should I tell them what they are doing? They do not listen to him, don’t take him seriously.

It can’t go get on like this, I’m losing him, he’s losing himself…

PTSD passport meltdown…

I’m applying for a passport, not had one for over 10 years but thought I’d get one before the EU fiasco finalises. Anyway sent all the forms & old passport off thinking everything is fine, they’ve been texting me saying so. I get a letter today telling me they need proof of my change of name from my first marriage to my maiden name before my second marriage because my solicitor has not put the double barrelled name on my decree absolute! I phone the passport to be told I need a statutory declaration of name change for that period, which gets me all upset & triggers a PRSD anxiety attack re first marriage, which means I burst out crying on the phone & cut off the advisor. This is on top of not getting any sleep last night because my current husband spent a night in a tent in the garden in the rain rather than be in the house.

Things are going well…

Fading bloom

I don’t want to get out of bed, I don’t want to move, I don’t want to know I have nothing to look forward to, no goal, no prize, no reason for getting up.

I’ll just lay here, curled up in a ball, fading….