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