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.

Motley Mini Rants

I haven’t been able to write or colour or paint or draw or type much for the last ...wow! that’s a long time!

Partner wrote an article and some eejit said it was whiny and incessant... it was neither.
We don’t complain... some people may think we do but we don’t! I only had here to offload and then I suddenly couldn’t.

Social work are being utterly disgusting with my partner and putting her through a pre-assessment assessment tomorrow to decide if she warrants an assessment... (she’s already in their system and hasn’t had any contact with them of any sort -their failings not hers!- for at least 14 years, so yes! “Things have changed here on Walton’s mountain”! and this is downright unlawful and they keep pushing it back which is also adding to squashing feeling...

My social worker (who happily left me homeless more than 17 months, because there is NO TIME LIMIT for rehoming someone who is disabled in Glasgow since those flats/houses are “few and far between”?!! Yeah because the builders keep finding loopholes to build them properly accessibility-wise STILL(!) and my old housing officer told my mum I was “basically waiting for someone to die”! My mum dropped her bag and later that night cried herself to sleep.

Finally managed to get outside today to go to a mental health assessment for me and the taxi’s ramp broke so I was trapped in the taxi& ended up 20 minutes late; (I’ve waited more than a year for this appointment but that incident all outwith anyone’s control? Not a single fuck was given)
Partner called to let them know what was happening and they said ok and to come...
THEN? they wouldn’t see me. Next appointment was for April. Hopefully I’ll no longer be anyone’s burden by April.
We’re both in wheelchairs. That means a 2-taxi trip everywhere.
The hidden expense of being disabled means that cost us £48 today for nothing more than tears and fighting urges to hurt.

Some idiot replied to my partner’s article this evening and that comment just landed on a day when folk who don’t get it need to reel their neck in. I’m all for freedom of speech and comment away! but sheesh! Read the piece first eh?!

Long story short... I had a rant and I’m going to try to sleep and it will be fine.
Also, I’m sorry.

trying to be ok after being assaulted

I’m trying to be OK but I don’t know that I’m managing to be. I’m not in my head; I don’t know where I am but it’s not in my head.  I have yet to be able to get in touch with mental health out of hours or  (long story short my family see me doing that as me telling the world they’re not taking care of me. No matter how I’ve tried to explain that would be far from the case, I’m just not allowed the landline -you have to call from a landline and they call you back, it’s all such a rigmarole).

I am OK. Day to day it changes, as it does for everyone, I know. Nights are ...interesting, we shall go with interesting... Very erratic and dependant on so many factors, of which I have zero control.
When I manage to drift off it’s so horrible that I wake myself screaming -and my family, and possibly the neighbours and goodness knows what animals are thinking I’m some other creature’s dinner...

I’m trying to be OK but I’ve become more of a burden than ever. I most definitely don’t like the fact that everything seems so far-fetched that it cannot possibly be true; if my life over the last few years had been a soap plot line for one character there’d be mass outrage at the insanity of it. (Yet when it’s being lived there is no public outcry... Good God! Not that I’d want that! I just mean... I don’t know what I mean...) I’m sorry you know stuff. I’m sorry to add to the toxicity of this world by just being in a room and people knowing things. It feels like everyone knows everything but I know that’s not the case. Very few people actually know and I’ve not spoken about it (with the exception of having given a statement-where two police officers and an appropriate adult(!) appeared at my door and I dissociated so badly that I have almost no recollection of any of the SEVEN HOURS I was with them!)

Dissociation is both good and bad.
My inability to recollect specifics is telling me he is a stranger; my ‘dreams’ are not...

Homeless and disabled in Glasgow

Being homeless and disabled is... there isn’t an adequate word... I’m going with interesting because I refuse to spend hours fretting over one word... again.

Right now I am exhausted in every way possible.

I was put in a terrible predicament that triggered my BPD (Borderline Personality Disorder) and caused me to flip the switch in my head where I jump a million steps and go straight to ‘what if I can’t get to a shop to get food from a homeless unit I’m put in because it’s not accessible and have a day/week/month where I’m unable to ask for help with that...
so I was told, because I mentioned something (going to panic-causing events in my head caused me to say that I just wanted to stop existing) that caused the police officers to not be allowed to let me stay anywhere on my own.
I’m now in a place where I am crawling and being shouted at for doing so.

To get somewhere to stay I’ve to apply to each and every housing authority, if I’d like to stay in that area, fill in all the long-ass forms, AND EXPLAIN WHY I NEED TO MOVE.

Brilliant.
I’m done.
I cannot possibly do that.

Oh, why were the police involved? I was assaulted. In the flat I stayed in. Alone.

I thought he had come to kill me.
I wish he had.

I’ve not to stay in that flat under police instruction.

This is all too much.