Disabled Front Line

I miss the folk from GDA face to face but I’m absolutely terrified that people aren’t being sensible with LFTs and masks and general lifestyle that means we’re being put at risk by their choices (or lack of choice I get it I do I swear to frog)

You guys are the front line and those with complex underlying conditions and going home to others with underlying conditions…

I don’t know how you all seem so calm and still forge ahead and I feel both privileged and disgusted with myself that I am not going outside or face to face to fight the fights … I know, if nobody does it we just cease to even have a voice and I refuse to let these b@$t@rd$ win and cull us further.

I’m fully aware that GDA has gone SO ABOVE AND BEYOND FOR ME and I am grateful every day and I want you to know that I am fully aware that it can’t continue the way it has been -social workers and their high heid yins and other powers that be and decision makers seem happy to hear that GDA are where I’m getting showers from. This is so far from ok and I am not a fan of the drain I am on the amount of people I am.

In a nutshell I understand the PA visits cannot continue and I want to be outside sometimes (to GDA things, the rest of the world seem like the heartlessness has upped since pre Sars2).

I haven’t felt the urge to go outside for a long time and it is definitely increasing which I suspect is a good thing… 

but it’s also a double-edged sword.

the outside-ness… last night was horrific … when it’s a fight to go outside for one final outside? It’s bad. And when it’s then? I NEED to not have access to outside.

I very nearly went.

I sent a message to one person and then quickly deleted it and fought and… 

I need to shut up. 

Either shut up and do it or shut up and don’t… 

either way… 

shut up. 

I’ve been trying to be as quiet as I can be so as not to cause more drama/trouble/harm to people than my existing already does.

I’m not doing a good enough job if it.

I also cry at the mere thought of outside. Like I’m somehow lessening the loss of Susan by even wanting to go outside.

I expect she would be fighting better than I am, leaning on less people, at the very least showering herself independently and caring for herself independently… and probably even working her 2 jobs and still volunteering at several other places …

I have never adapted to the complete loss of my mobility -ultimately because the equipment has been ill-made and made FOR A CARER to be there 24/7. Susan was then made to be that “other” when all care was rescinded the night before our civil partnership. I should have said stop then. I absolutely doomed her to the fate she ultimately met. If it had been reversed I would have been unable to do it and done what she did… it should have been that way.

This world is tough enough for Disabled people, more complex when no weight bearing can be done and “just one step” shit is still used as explanations and not realised to be soul destroying. The last 5 years showed Susan how much she’d been pretending to herself that the world was possible to navigate.

If I’d left her alone she’d still be here.

My Heart and My Head

 

I confuse my heart and my head often… metaphors rule my life. 

My heart is broken. 

How dare it continue to defy me and beat? 

Why can’t someone else have it? 

…if that were possible would they feel the pain I did with it?

I absolutely still do not believe she is gone. I AM FIGHTING WITH the word ‘widow’.

We loved to discuss and debate words and etymologies and…

I’m not a widow… she is still my wife… she is still in my dreams, my heart, my head, possibly the other room (my brain tells me that can’t be true but my heart…?)

I am drowning in horrible and harsh forms, bureaucracy will always demand that I tick that detestable and difficult box.

‘Widowed’. My heart feels like it is going to burn and melt and I will become nothing… I wish it would.

The first census we should have been ticking the ‘married’ option…

Just a box to them, they don’t care.

Just wipe her existence away. 

For what? 

It used to be so the correct amount and percentage of things in areas were available for those in that area… but there is genuinely nothing in any area suitable for my needs…how does ticking this new box that now applies and they demand I choose it and nothing but, help anyone?

My heart hurts for the insensitivities and hurts in this world.

I did this

I know I say I or me a lot but it’s not in a vain way. It’s to make clear I’m speaking for me and my head mess and not assuming you do or do not think that way…

I realise that probably makes little sense. 

It’s not worded well.

I think of you and your mum and dad and so so many other people… a lot… and not just these past 5 months … we finally got to a place where we’d asked your mum to come over once a week, where you were getting to fully know her as a grown up to grown up…

 

And it doesn’t matter what plans were does it? 

I wish everyone hated me so they’d be relieved from the duty of care and burden that is me.. This isn’t a storm I can dance in or any of the crap people have said.

How can you just be when you don’t know if you’ll be awake or compos mentis or …

And I did this to her.

I brought this level of daily uncertainty to her.

And I’m sorry. It’s not a big enough word.

All the things I did before…

 I’m having a wee panic at my overshare here… 

I apologise…

I lost quite a lot of folk I thought were friends when I started losing my mobility (and by the time I had a rollator I lost my Girlguiding identity too because I couldn’t get to Brownies and Guides anymore -they’re often held in cheapest buildings possible and that can be quite interchangeable with inaccessible … you’d think given that I was originally taking units that met in a high school and had a lift I’d’ve been sorted…but no… the janitor “wasn’t allowed to put it on after school hours” 

…

So I went to one that met in a different location with my sister returning to Guiding which was fab to have her back …she helped with Rainbows and Brownies and I was helping at Brownies and Guides…

But nobody would open the flat entrance… I fell up outdoor stone stairs twice (once a parent caught me and once I got hurt)…

When we left it was effectively 4 Guiders gone and her 3 girls…

I was really sad. They all missed out…because of me, effectively.

I started questioning my sanity when some folk for whom I’d done a lot in the past who were “devoutly religious” couldn’t/wouldn’t help me work out how to get to Church when I was too feart to ask yet another priest (to be clear I asked 4 different ones and was told they “don’t visit the under 65s” … even though I was housebound that didn’t matter. 

Hey ho and all that… I had my family trying their best whilst trying to live their own lives…

…and then I found Glasgow Disability Alliance (GDA) who tried (and succeeded in) getting me back outside! And it was at GDA that I met my wife…

Cue that last bunch of folk from before to get a chance to shed me completely…

The ones who would say things like they “can’t be seen to be condoning that kind of relationship” completely obliterated years -and in some cases decades- worth of friendships in the uttering or paraphrasing of a phrase that’s, actually, untrue… if you wrote to a prisoner would you be being seen to be “condoning” their crimes??? The reasoning is faulty.

It doesn’t make being unable to communicate with them hurt less though.

My diagnonsenses and how they impact me

Social worker asked me for a list of my diagnonsenses...

Quite insistent that if there wasn’t a name for it it couldn’t impact me “all that much”

This is the second social worker I’ve had say this though I no longer remember the exact wording from the first one more than 10 years ago…

Some I’ve remembered that I think I couldn’t the day you asked:

I’m just me...

But they need exact words for their forms and I get it to an extent; except I don’t.

I’m sitting with them explaining to them how I’m being effected by x, y or z and I’ve to say what does what?

What the hell… look at me!

LOOK AT ME!

Listen to me!

BELIEVE ME AND SEE ME!!

But I’d to do a formal email and it was to be medical jargon ...

So I tried …

here you go...

##

WHEELCHAIR USER <you don’t understand already… no I can’t just reach a bit further…*I didn’t put that bit in!>

~*~CRPS (Complex Regional Pain Syndrome)

-CONSTANT burning pain in right foot (slightest touch and bump can cause intense pain)

-I can not weight bear 

(I lost all my walking and use of my left leg only in April of 2019 so I AM STILL NOT ABLE TO COPE WELL WITH THIS CHANGE)

Touching my right heel WILL result in me vomiting (note this well and if care providers would pass it on to their staff that would be helpful... and when it's 'not their staff' but an agency worker because of the deep-rooted problems in their agencies to be unable to retain staff they rely on this bank of workers...but TELL THEM NOTHING about the person to whom they are going to care for!!! This floors me... how unsafe. For so many reason how unsafe!! The worker could be heading to a potentially violent person and THEY ARE NOT TOLD! -"oh if they were all that violent two people would be sent or someone would have to know them, surely"... no, this happens and is still happening. It is worrying. I worry about staff who visit me. They remain in my heart forevermore, even the ones who have been horrible or continue to cause me pain, physically and emotionally... i still cannot switch off my heart.) These agency workers are also not privy to my notes nor are they required to leave notes.)

~*~Borderline Personality Disorder

-intense fear of abandonment > excessive efforts to avoid abandonment

-intense anger and irritability

-impulsive

-frequent dissociation *will dissociate to the point of not knowing conversations that have occurred around me, or with me if the dissociation is particularly prolonged

-tendency to act unexpectedly and without consideration of the consequences

-marked tendency to engage in quarrelsome behaviour and to have conflicts with others, especially when impulsive acts are thwarted or criticised

-prone to outbursts of anger or violence (ONLY TOWARDS SELF), with inability to control the resulting behavioural explosions

-difficulty in maintaining any course of action that offers no immediate reward

-disturbances in and uncertainty about self-image, aims, and internal preferences

-chronic feelings of emptiness

-Suicidal ideation

*ALMOST ALL OF these traits feed my agoraphobia to no end

~Self harm/Self injury

~*~Chronic, Brittle, Acute Allergic Type 1/Type 2 Asthma

~Agoraphobia

~Agraphobia

~M.E. (Myalgic Encephalopathy)

* The main symptom of CFS/ME is feeling extremely tired and generally unwell. 

My other M.E-related symptoms include:

sleep problems,

muscle or joint pain,

headaches,

a sore throat or sore glands that are not swollen,

problems thinking, remembering or concentrating,

flu-like symptoms,

feeling dizzy or sick,

Heart palpitations

(The severity of symptoms can vary from day to day, or even within a day.)

*My M.E. is now so severe that there can be entire days where I AM COMPLETELY UNRESPONSIVE. I am unable to eat or drink on these days.)

On good days, 2 meals is my max. I’ve tried adding a meal replacement shake but it’s not working… I just have no energy to eat and I’m losing more energy with one particular carer who has decided that I’m making myself ill by not eating and thus not having energy, he’s got it a$$-backwards and will not listen which is exhausting me further… yes, I’ve chosen to be in bed for 3 years; it’s super cool don’t you know?! (Just to be super clear, that. Is. Sarcasm.)

~Allergies -many foods, medications, smoke, stings, bites, perfumes- Anaphylaxis has occurred. 

~Anxiety (various anxiety diagnoses); 

~c-PTSD (complex Post Traumatic Stress Disorder)

-from more than one sexual assault (actually, if we’re needing numbers, it’s from more than 5 so far that I’ve managed to discover that I buried),

and physical attacks (plus also being a witness to a variety of attacks on others involving weapons and having to give evidence at court but not allowed to remain anonymous, leaving me tremendously vulnerable to response a);

~general anxiety; 

~panic disorder; 

...

-Phonophobia (fear of loud noises)

-Misophonia (an intolerance to certain sounds, usually causing an intense reaction like rage)

-Hyperacusis (an over-sensitivity to noises) —> all of this causes my agoraphobia to be that much harder to fight.

Feelings of panic, fear, and uneasiness

Uncontrollable, obsessive thoughts

Repeated thoughts or flashbacks of traumatic experiences

Nightmares

Ritualistic behaviours

Problems sleeping

Cold or sweaty hands and/or feet

Shortness of breath

Palpitations

An inability to be still and calm

Dry mouth

Numbness or tingling in the hands or feet

*this adds to the pain from the nerve damage I already have

Nausea

Muscle tension

Dizziness

~Allergic Rhinitis

~Chronic Clinical Depression

~EDNOS (Eating Disorde Not-Otherwise Specified)

~Chronic Insomnia

Sleep paralysis

BONES:

Sporadic Osteoporosis

Arthritis

Localised Osteoarthritis (Right leg)

Osteopenia

EYES:

-Partially-sighted (blind in right eye)

-Nystagmus

-Astigmatism

Mainstream Mindfulness with a Disability

 As a Disabled person you have to be several steps ahead of the calendar … living “in the moment” (this approach can feel like a kick in the gut often) and not because you don’t want to live in the moment but because that’s NOT REALLY AN OPTION FOR EVERYONE IN THIS WORLD…

Stop telling me it is when you do not roll in my wheels.

I cannot tell you about other communities nor can I speak on behalf of all Disabled people (and I wouldn’t dare to) … but for some, to get the “Valentine’s Day” (or birthday or Christmas etc) you have to have planned and hid things and you can be relying on another person to put something where you have asked and that doesn’t happen or it gets moved in an emergency or a ‘routine’ clean that has one thing returned to a place where it was not… then someone moves it again and before you know it it is gone… and you can find it later, or never. The gift or the essential item (medical equipment, personal care products, food… anything) is gone in the blink of an eye and the day may not be wasted, you can still TRY to live in the moment but living in the moment when you are not get basic needs met is actually pretty traumatic. Feeling the part of the equipment’s loss can mean you are unclean, uncomfortable and very conscious of it. Nobody can pop to the shop to get specialist medical equipment at 11pm…

Today (Valentine’s Day 2022) I had prepared as best I could do as to have a surprise for Susan. Nothing too fancy (she wouldn’t thank you for such an item) just … a little something she liked that ALLOWS HER to have a wee minute in the “enjoying this moment moment”…

As ever, plans can be changed in the blink of an eye. We know this. We expect this. We battled this day and daily. Our friends do too.

It’s often something you wouldn’t expect. Especially not if you have never lived it. Food being put above your head where it is not possible to be brought down and cooked and eaten is, sadly, something we did expect as we experience often. So a bag of “easy to open and easy to access” food is on the handle of my commode … easy to open and easy to eat because by the time several attempts have been made at trying to sort the changes to the things you had planned out you are COMPLETELY exhausted: physically, mentally and emotionally. 

Whilst eating it you’re aware of it not being a ‘proper’ meal or you remember the comments about your “big bag of junk food”… the intrusions to trying to just be, to just eat something, can be too big to fight.

Then to be told you just need to “keep at it and try harder” to meditate often adds salt to an already several-layers deep wound…

Stop it. You do you. That’s great. I’m not going to tear you done and tell you anything that would hurt you… but to constantly stick to this as THE SOLUTION to difficulties FOR EVERYONE when you move differently in this world is simply unfair and frankly, hurtful. I ABSOLUTELY AGREE that it could work for some and that there are some parts I use to filter out the crazy occurring around me… but it’s just not the same.

We keep at and try hard in EVERYTHING we do … from waking til sleeping… For some, existing is a battle of wits, wiles and you can waken with as much positivity as you can muster, but no amount of enthusiasm gives us telekinesis (as of Feb 2022) nor does it change where critical items are situated…

Her Valentine’s Day present is here for her.

She is not.

This is absolutely a change I did not anticipate. Nobody in our lives did.

I don’t know how to fix it.

I don’t have a magic wand.

I don’t have a Time Machine.

All I know is that the pieces of me that were already exhausted are now shattered into those fragments that slice your fingers to ribbons when you try to pick them up.

I’m fighting the “you can’t win” vs “something HAS to change, for more than just me, this is so so much bigger than me”

For Susan, I want to fight on.

She is genuinely the wind beneath my great big chonky wings.

Trying to keep on keeping on

 .full of …nothing… I’m not even angry or sad. I’m just. Nothing.

I’m sick of this bed.

I want to go the fk outside. I want to go swimming.

Fk man I just want to get into the living room. 

It is Sunday, technically, 1am…and I haven’t had a wash since Monday because the carers can’t wake me and it’s causing all sorts of stress in a marriage that’s not even a year and a half in. 

I… can’t even explain to the decision makers how bad cr@p gets. 

I tried this week with a psychiatrist I’ve waited 2 years to hear from…and she decided it was all physical and once I have the correct powerchair “things will be mich better”… not denying that may help but…how tf do I get to that day?

I’ve been waiting for more than 10 years for help with physical movements. It has culminated in me being now completed confined to bed and I have a bedside commode. (I wanted to write $hit bucket but… it’s plastic and it just reeks beyond belief. If you could smell a picture I would post it on Instagram to show people what’s REALLY GOING ON for the disabled people of Glasgow and the U.K… and we’re supposed to be a “developed country”…a phrase coined during the Cold War that really needs to change! THE U.K. IS NOT OK. It hasn’t been for a long time.

Stupid head is racing. 

How dare I wish to have a shower at whatever time I’d like (or need…I’m not choosing this…I have M.E. in amongst other things)… people don’t believe I can sleep through someone trying to wake me… and when they first experience it they’re usually alarmed and want to call for a doctor. We laugh at that now (we DO NOT LAUGH AT THE PEOPLE)(we laugh at the thought that a doctor would be prepared to come witness this -they saw during my last hospital stay. 

They did not seem bothered.)

I don’t know what I’ll do when I can’t argue the fact that gaming helps.

I’ve had to curb it because my wife finds it upsetting. She thinks I’d rather spend time playing with fun people and that she’s not fun…

But.. it’s not that. I’m checked out.

Also… the score at the end of the month gets turned into money for Mary’s Meals and I don’t feel like a completely revolting and selfish ‘human’.

I can’t properly see the games anymore -even taking the limits I had previously into consideration (I’ve always been partially sighted)…but, now it’s sending me right over the edge.

I wasn’t always the last to do things.

I didn’t always do nothing.

I used to be fun and funny -or so people said.

I used to run 2 10Ks a year for charities and now … I’ve been inside this flat since jan2020 and in this same fkn bed since june2020. A full year. Just in bed.

I don’t feel like a human. I haven’t for a long time.

The filming for Indiana Jones AND the next film with the flash in it were happening in the last few weeks ONE STREET OVER and we’re just completely invisible.

I don’t feel invisible when I game but I am scared at my vision loss and I can’t get to a fkn eye clinic (and I’m scared to go out at the best of times but now I don’t want to know the answers)

I know the answers. I’m losing more vision…

And I can’t think how it’ll be to have no vision and no walking and …all the phrases of “you should be thankful you have food” (I AM!) and “you should be grateful you’re not in a war-torn country” (I AM!!)

My heart feels like it’s breaking but my head truly believes that i deserve it.