bluegoblinfox

[bluegoblinfox]

We have rats. Lots of them. Not the pet kind. The piss and shit in your kitchen cupboards kind. I bought poison. I don't like it, far from it but there were ten young ones in my cupboard and they weren't taking the bait in the humane traps or traditional ones. So poison was the only way to go.

I opened the cupboard this morning to find one eating it's mate that had died. It was before coffee and so I shut the door and headed to the front room for caffeine. Vowing that I would deal with it after I was fully caffeinated.

Donning gloves and armed with bleach and a Dyson vacuum I opened the cupboard to find the little shit had completely finished off his mate. Bones and all.

I emptied the cupboards, throwing everything in the bin. Then vacuumed, scrubbed and bleached the fuck out of them. It was fucking grim but it's done and more poison left behind my freezer to be sure.

After a hot shower and change of clothes I picked my daughter up to go buy a phone. Was lovely to see her even though I was fucked from cleaning and from yesterday despite sleeping almost 12 hours last night.

I had to pop and grab some shopping from Asda and then headed home and to bed. Resting for a few hours before throwing tikka chicken in the ninja and some salad together. Dinner done, washing up done and I am back in bed.

It's not even half six and I'm going to sleep. I'm so exhausted. I want to try and keep a diary here of what I'm doing and how I feel. To keep track of stuff. I've had paracetamol and ibuprofen and my pain is bearable. Just feel like I've been to the gym- am stiff and achy. My right knee has calmed down too thankful. It's the fatigue urrrrggghhhh. Doing fuck all tomorrow though. So yay.

#actually autistic #mental health #plural system #autism #living with cptsd #adhd #plurality #functional neurological disorder #chronic fаtiguе ѕуndrоmе #autoimmune #dermatomyositis #chronically fatigued #diary #tw rats #tw gross

[bluegoblinfox]

And if you want to "light it up," please do red, not blue. When we see the puzzle piece or "light it up blue," both of which are promoted by anti-autistic hate groups, that tells us you don't actually care about or respect us.

Not gonna argue about this; I'll just block.

[bluegoblinfox]

I grew up in the 90s where I constantly was told to "Be Weird!" Apparently I was supposed to be neurotypical weird, not autistic weird.

[bluegoblinfox]

Floofy floof for floofs sake alone

I have been seriously ill before. With cancer and then from the treatment which put me in heart failure. I know the heavy leaden feel of this. I know the difference between that and fatigue from other causes both chronic and acute.

I feel the fatigue leaden like gravity has doubled. I feel the weakness in my limbs. Different to the heavy energy starved fatigue from M.E. both debilitating and similarly quantitatively but this is qualitatively different. I feel it.

I know I can't fight this with mental gymnastics. I fight it by working with my bodily limitations, as well as with the power of medicine and science.

I am anxious none the less. My dexterity that I use for creativity has reduced significantly over the past month. My fatigue has increased exponentially in that time too and routine tasks which once fatigued me now feel like lifting weights and crush my energy levels to smithereens. I'm anxious as to what another six weeks or more, before I hopefully start treatment, will do to my body. Will the damage be permanent or the reversible? Will the first treatment work and will my liver and heart tolerate it? Will I tolerate it?

I know right now six weeks seems like a long time. I know that the next three months appear vastly unknowable and just as uncertain. I also know that in a year this will have passed and be no more an issue than my issues of last year are to me now. Those were significant too.

I need to be mindful and present. Keep my head in the now as much as possible. Feel the feelings, the pain and fatigue and acknowledge the loss of function without comparing it too much to the past or projecting too much into the future. It is what it is now. That's all and it will all pass.

As the darma ting in Peter V Bret's The demon cycle books say "fear and pain are only wind"

#chronic fаtiguе ѕуndrоmе #functional neurological disorder #breast cancer #autoimmune #dermatomyositis #myosotis #chronic illness #spoonie #mindfulness #mental health #actually autistic #autism #living with cptsd #plurality #plural system

[bluegoblinfox]

CW abuse and suicide and addiction

I have difficulties with money and have had difficulties with money all my adult life.

I have had difficulty with hygiene stuff too. Especially brushing my teeth due to sensory stuff and executive functioning.

I don't get to the loo in time sometimes and have problems with UTIs from holding on too long. I'm 44 and had kids. This has definitely got worse as I've gotten older.

I have C-PTSD from domestic violence and have had many friends or partners which it has taken me way longer than it would neurotypicals to notice and take action on red flags or abusive behaviour.

I had a serious suicide attempt in 2009 and have had mental health issues since I was a teenager.

My brother was autistic and died as a result of alcohol abuse.

I used alcohol as a crutch and habitually drank daily in a socially accepted way (wine in the evening) from age 18 - 34. It was not healthy. I'm sober now.

These things all ignite feelings of shame but talking about it openly is the only way to reduce that stigma. It's not just you and it's ok to struggle with this stuff.

Autistic Struggles which might be difficult to talk about…

Neurodivergent_lou

#autism #actually autistic #tw alcohol #tw suicide #autism struggles #autism experiences #neurodivergence #neurodiversity #actually neurodivergent #no shame

[bluegoblinfox]

Skin biopsy on Tuesday of this lovely mess on my hand.

It's on my elbows and ankles. I have a rash similar on my face and scalp and a lighter more delicate one on my chest and shoulders.

My wrist is swollen and feels sprained but it is not. My fingers are stiff and hurt loads. My elbows and knees are painful too. As is my neck. My intercoastal muscles and pecs are tight and sore.

My eyebrows have dropped lower.

I have a weird taste in my mouth which won't go. Don't know if this is related.

I feel like I've lost weight but I don't know that for sure.

The general fatigue and weakness in my arms is unreal.

I just want the dermatomyositis confirming with the biopsy and then treatment. I can't see it not being confirmed but I keep gas lighting myself over my symptoms. Like what if I'm just imagining that all this stuff. Then I look at my hand and I'm like nope that's real.

I have not felt this fucked on a daily basis since I was in heart failure.

This is scary arse bollocks and I'm trying very hard to go with the flow and take everything one day at a time. It's hard though as the deterioration in my health in the past month has been insane.

I do think my lung function has been impacted and my voice too. I don't want to be seriously ill again. I definitely don't want to end up in hospital with this shit.

Chronic illness call fuck off and get in the bin.

#functional neurological disorder #chronic fаtiguе ѕуndrоmе #autoimmine disease #dermatomyositis #out of spoons

[bluegoblinfox]

Source: Facebook

**** Unmute!

[bluegoblinfox]

[bluegoblinfox]

This song is especially for the cunts at the PIP assessment centres.

#actually autistic #mental health #plural system #living with cptsd #adhd #autism #plurality #functional neurological disorder #chronic fаtiguе ѕуndrоmе #dissociative system #chronic migraine #chonic pain #fibromyalgia #personal independence payment #breast cancer #cardiomyapathy #dyslexia #liver disease #ableism #fuck off #Youtube

[bluegoblinfox]

The DWP: you have a work capability assessment via telephone next week.

Me: ummm I have communication issues and shutdowns and no one to support me in this call. If I suddenly can't communicate verbally I'll have to just end the call. I don't want to be penalized for this.

DWP: We'll cancel this for two weeks then be in touch with another appointment giving you time to source support

Me: Calls autism support service (run by volunteers) and asks for support

Autism Support Service: We don't offer that but can refer you to CAB and write a letter about your needs. Come in next week.

Me in appointment: So yeah that's me and my needs in brief.

Autism Support Service: Great we will write a letter and it will be with you next week and we've referred you to the CAB.

Me: Thank you so much that's really helpful.

CAB calls: yeah we don't offer that service but you can ask for a face to face appointment at your home. You'll need a doctor's letter to support this though. Here's a number for an advocacy service local to you. They could help you in the appointment but there may be a waiting list.

Me Calls advocacy service: Hey I was given your number by the CAB... Explains issue...

Advocacy: We don't do that or anything to do with benefits. They CAB may be able to help.

Me: actually they can't but thank you anyway.

So now I have to get GP appointment and letter to say that I need a Face to face appointment at home due to communication issues and autistic shutdowns.

This is a lot of communication that I've had to do to arrange support and make accessible an assessment that is there to assess my disabilities in relation to work. It's taken weeks to get this far no of least because I can't communicate with everyone back to back even if that were possible. I can't sit on the phone and call and call people explaining everything over and over again in one go.

All this to access an assessment with an organisation who deal with disabled people all the time. Set up by a government who have made getting support to access health care, social care and any support with anything like this impossible due to cutting funds to public services. It's almost like the system is set up to make it really fucking hard for people to access benefits.

#dwp #work capability assessment #actually autistic #mental health #plural system #living with cptsd #adhd #autism #plurality #functional neurological disorder #chronic fаtiguе ѕуndrоmе #fibromyalgia #dissociative system #ableism

[bluegoblinfox]

I feel bad or like I'm doing something wrong for acknowledging my physical disabilities. As though I should be able to suck it up or power through. Maybe it's because CFS, FND and fibromyalgia are all kind of we don't really understand what's wrong with you types of diagnosis.

So my right leg has been really bad recently. It feels so weak and hurts but thankful not as bad as it has in the past. However my joints hurt all the time and it's most of them now. My hands, especially though. Particularly my left hand. I have a rash that I'm waiting to see dermatology about over my knuckles and it's impacting my dexterity. My facial numbness has been coming on towards the end of most days and the fatigue has me in bed by five pm every night. I'm not imagining these things or causing them by my mental state. Not in the way that just basic self care can solve anyway. This FND flare has been caused by a chronically long term family stress and I am sure it will ease again in time. Right now though it sucks.

I'm getting worn down by constantly ignoring pain and I don't know what to do about it. I think I need a crutch to help my mobility but whenever I've talked mobility aids with professionals they just scoff that I don't need it. I have a high robust pain threshold but I'm avoiding walking because it really hurts which makes walking more likely to hurt because of muscle loss. I can't take pain killers like paracetamol or nsaids on a regular basis as I have stage two liver disease from chemo. Urrrrggghhhh it's all bollox.

#actually autistic #mental health #living with cptsd #adhd #autism #functional neurological disorder #chronic fаtiguе ѕуndrоmе #fibromyalgia #chonic pain #joint pain #chronic illness #spoonie

[bluegoblinfox]

Tuesday me decided that Wednesday me was going to do paperwork stuff and post things.

Wednesday me was fatigued to fuck and paralysed unable to move on with anything like eating or stuff because of the demand avoidance stress of having this thing I had to do.

Then Wednesday me remembered that actually it could fucking wait. So then I felt better and ate stuff and adulted a bit in other ways. I also did a lot of laying on the sofa too.

So today me is going to post the thing and get coconut barista style milk and pasta for tea. Also today me rocks because I went into the hospital and had appointments and stuff. So today me gets a wispa too.

#actually autistic #mental health #plural system #living with cptsd #plurality #adhd #autism #functional neurological disorder #chronic fаtiguе ѕуndrоmе #fibromyalgia #liver disease #dissociative system #ptsd #adhd paralysis

[bluegoblinfox]

Sooo I think I'm collecting the diagnosises of we don't actually understand what is happening with you but this is as close as we've come as a medical profession to naming it and it's symptoms.

Got a diagnosis of Fibromyalgia today to go with my diagnosis of CFS and FND. It's like a bingo game no one wants to win.

I am not annoyed about it or anything. They all overlap so much anyway but each have extras the others don't. Like autism, ADHD, PTSD and dyslexia...they all bring their own shit bottle to the party.

I really sound bitter but it's not that. It's just funny to me. How messed up stuff like that is. I am relieved I don't have an autoimmune condition or anything that is easy to diagnose because it kills a bunch of people. I am just amused by the collection of what-the-fuck-are-you-and-why-does-your-body-do-this diagnosis I have.

For me it's enough to know what it isn't but the labels help more in explaining it to other people clearly and give legitimatentcy to the whole deal. People just don't believe you if you don't have a label for it.

#fibromyalgia #actually autistic #mental health #plural system #living with cptsd #plurality #adhd #autism #functional neurological disorder #chronic fаtiguе ѕуndrоmе #actually dissociative #dissociative system

[bluegoblinfox]

One year on ...

It's been a year since everything changed. Again. After 44 years I've got though a lot of 180° swivels, violent pivots, plot twists and what has seemed like jumps to a parallel universes. This one last year though. That we are all still here I thank the fates for daily.

Things had been shifting underneath me for a while. Like the first fractures in the snow of an overhanging cornice. Slow creaks and cracks before the avalanche sweeps everything away. I was burried under the weight of emotion and drowning in powder. I gasped with the horror of what was happening infront of me. Unable to believe it. Unable to catch my breath until everything stopped. I think that moment of tumbling, breaking and drowning lasted ten days. Ten days and nights.

I was rescued by a kind professional hand pulling me up from beneath the snow after those ten days. Offering respite from the crisis. Once I caught my breath, I sat shivering with the shock of it all. Funny thing was at that point I missed the weight of all that snow. Or maybe I just thought I should miss it. I don't know.

I felt I missed the responsibility. The responsibility that had broken me. I should be there right? I'm her mother right? I mean I'm broken and battered and sleep deprived from trying to dig my own way out from under that all consuming leaden responsibility but I'm her mum! This is what I should be doing for her. Caring for her. Not sat shivering on my own amid the fall out of her avalanche.

I had forght so hard to reach her. Up through the snow I struggled to reacher her. Someone I bore into this world. Someone who no longer recognised me as the same safe place I'd always been. Who with every agonised push and heave and fight upwards I tried to make, she was just as forcefully trying to rebury me. To hold me down as surely as I was fighting upwards. Like mother, like daughter. Will to will. I willed and tried to pull her into reality with all the love I have for her. The love was the same that had flowed in salty rivers on my face when I held her in my arms that first time. I ached to bring her back from wherever her mind had gone. Ached into the bones of my spirit.

Yet I ached also to rest. To sleep and sleep and sleep. l wished the world could be switched off. Bed side lamp off. World off. Me off. Not thinking anymore. Just deep dreamless sleep.

That was then through and now the snow has long thawed. There is still a gauge through the earth. A scar which has yet to heal. There are trees whose upturned roots stand testament to the violence of it all. There are also spring flowers and life in the grass. Heather growing in great swathes over the mountain side. Purple hues waiting to burst into crisp clean mountain air beside the babble of stream growing in strength where there was just snow before.

There is also my daughter. Grown and as independent as a young adult can be. She recognises me as safe again, as love again and all that goes with it. I hold her close as often as I can.

She lives in separate lodge in another valley close by. Both our valleys are forever scarred and changed by the battles we had for each other and with each other in the midst of those avalanches.

There are the first spring blooms starting in her valley now. Bravely pushing out of the earth. The thaw took longer here. Patches of snow still cling in places. Stubborn unwelcome reminder for her. Hope is there too, thick in the heavy dewy air. Pushing back against the snow and encouraging the blooms of spring.

I still ache for how I imagined this time would be. For us together for longer and for her moving on and out to have been less cataclysmic. I'm grateful for the thaw, for the hope held in spring and for the promise of the heady lazy bountiful days of summer which are just around the corner. Most of all I'm grateful for all the peace and love I have now, one year on.

#actually autistic #mental health #living with cptsd #functional neurological disorder #autism #chronic fаtiguе ѕуndrоmе #plurality #adhd #plural system #trauma anniversary #one year anniversary #anxiety #anxiety induced delusions

[bluegoblinfox]

DWP Sadists are coming for me....

Not in a fun way either. Yeah that's right I have a work capability assessment next week. I've messaged universal credit and asked them what should I do if I experience a communication shutdown in the middle of the phone call. No reply as of yet.

I've contacted a bunch of people to try and get some support with this and nothing yet. Also how do I explain that part way through I may start talking like a dude if Kai decides we are threatened and fronts?

Not too mention I'm probably gonna to squeak a bunch. With the vocal tic which sounds like a hamster on helium sneezing. Oh yeah and the stress of this assessment is going to fuck me over for days after.

So fuck you DWP. I'm gonna hex y'all.

Heather

#actually autistic #mental health #plural system #living with cptsd #plurality #adhd #autism #functional neurological disorder #chronic fаtiguе ѕуndrоmе #did system #living with chronic illness #dwp #benefits

[bluegoblinfox]

Non verbal or not non verbal?

I've really struggled to express this and why I am having difficulty with not using the term become non-verbal. I'm gen x and I'm trying to understand. Please be kind.

This it's been a part of my life always really. It's just when it got to this point I would hide away my own. It wasn't really an issue in my day-to-day life because I was masking so much. However I would burn out and need to take days and days off work to recover on I've regular basis. Places of work don't like this.

When my daughter was unwell and I was caring for her full time and intensively, I became very burnt out. I Began noticing that I would start to do what I called- loose my words. It would be like there was a fog in my brain between what I was thinking and feeling and putting that into language and then expressing that in words. At its best this would just be a verbal difficulty and at its worse I couldn't communicate in writing either.

When my daughter hit crisis, so did I. When she went into a crisis house and then went into a psychiatric unit, I began to notice the periods of me having difficulty expressing myself with words was becoming more frequent. As I said at best this was a shutdown verbally and at worse it was an inability to communicate using language at all.

It seems like the more stressed I was, the more stressful the situation was, the more emotive situation was and the more communicating I needed to do, the more difficulty communicating I had.

I still have these issues. I can feel them coming on most of the time. When it's all getting too much and I'm shutting down and my communication ability shuts down too. I still use the phrase losing words. However most people don't understand what that means and what it means for me.

I have used the phrase becoming non-verbal to describe my difficulties during these periods. I have recently read on Tumblr from people who are non-verbal all of the time that this is offensive. I don't fully understand at the moment why that is but I want to understand.

I don't feel the term semi verbal quite describes me as the majority of the time I can communicate using my voice and typing. I don't feel the term selective mute is an adequate definition of what it is I experience. I don't know I could be wrong on this.

I don't want to use language which detracts from other autistic's experiences or obstructs understanding. I do however need to use words that other people generally are able to understand the meaning of.

I think discourse is important. It is vital to establish a shared and precise comprehension of the meanings of words. It is equally important to grasp their significance within different social groups. These meanings contribute to the associated ideas, assumptions, and stereotypes related to those words. The common understanding of these words and any prevalent stereotypical beliefs associated with the group they describe can unfortunately result in discrimination and prejudiced actions.

However I don't believe in the gatekeeping of terms, definitions, labels, over who can use them.

I am queer and there are many definitions of what that means. However generally it means not cis-heterosexual.

Queerness like autism is a spectrum consisting of many parts. My queerness is more evident in some parts of my life and less so in others. My autism is impacts me to different degrees in different areas of my life. I am 100% autistic and I am 100% queer. Both those labels apply to me as an individual, as ways of describing my gender identity and sexuality succinctly and as a way of describing my neurotype succinctly.

People are argue all the time about who has the right to use these labels. I don't care if you are self-diagnosed autistic I think that is just as valid as a diagnostic label. I don't care why or for how long or when you decide that you identify as queer. It is just as valid to decide that you are queer in your teens or when you're 50.

I experience not being able to use language verbally at times. I don't understand at present why it would be offensive or wrong for me to say I experience becoming non-verbal at times. As this is a succinct and well understood way of describing this experience in a way that others can understand.

If someone can explain this issue to me in a way that makes sense and can suggest another way of me explaining my experience and getting my point across regarding my support needs to people in general without saying I have periods where I am non-verbal, then I will stop using that term.

#actually autistic #mental health #plural system #living with cptsd #plurality #adhd #autism #functional neurological disorder #chronic fаtiguе ѕуndrоmе #did system #becoming non-verbal #nonverbal #selective mutism #semi verbal #autistic shutdown #verbal shutdown #language shutdown #discourse

[bluegoblinfox]

help me