STUBS-Disability LIFE

09/03/2026

A RULE TO LIVE BY FOR WORK AND EVERYDAY LIFE : Whatever it is, i can handle it, i can take care of it

04/03/2026

Quote from

02/03/2026

DISABLED JOY

"Disabled joy is a political act of resistance that challenges the societal, medical, and capitalist assumption that disability is inherently tragic, unproductive, or defined solely by suffering "

Or

Disabled Joy, MY JOY is not political at all, it is simply part of the human condition. I am, we are, people with disabilities who can, have and do experience joy, happiness and laughter.

Meaning disabled joy is just that a person with a disability experiencing joy🤭😁 mind blowing isn't it

28/02/2026

REFRACTORY PATIENT

Refractory patients have diseases or conditions that does not respond to initial treatment, or stops responding to treatments that were previously effective.

This means the illness remains active, progresses during therapy, or fails to go into remission.

It often implies a high level of bodies resistance to treatment requiring alternative or more intensive therapies, some with greater side effects to treat the disease, illness or condition

28/02/2026

RARE DISEASE DAY- February 28th 2026

In the UK, a RARE DISEASE disability or chronic health condition is defined as a condition that affects less than 1 in 2,000 people in the general population

However many rare diseases have become increasingly common. A few of which are :

▶️Muscular dystrophy
▶️Sickle cell disease,
▶️Ehlers-Danlos syndrome

I am individual living with a rare disease.

My condition is called ▶️(CIDP) Chronic Imflamatory Demylinating Polyneuropathy.

A condition so rare that i often have to educate the doctors about it. The estimated prevalence of people living with the condition in UK is considered to be around 5-7 cases per 100,000 individuals

What makes me one of the extremely rare people, is im also considered to be a 'refactory' patient. A patient where the first line of treatment options didnt work and considered resistant to treatment options.

While there was a second line of treatment options available, i considered the side effects to high a cost to pay. This combined with limited research on the effectiveness or outcomes on someone with my comobidities and presentation, resulted in me being an individual left to self manage my disability - i said no to secondary treatments after several attempts of a range of first line of treatments.

Today i encourage you to share this post and spread awareness of rare diseases like mine

Sharing supports in raising global awareness, advocating for better healthcare access, and accelerating research for the 300 million people worldwide living with a rare conditions.

Sharing will hopefully send message to policy makers to improve diagnostics, treatments, research and social support.

I first self identified signs that link to my diagnosis of CIDP at 15years old (weakness right arm, twitching nerves), diagnosed between 22 and 23yrs old.

I often wonder if diagnostic testing was made harder by my Spina bifida oculta diagnosis as presentation, signs symptoms of many conditions overlap. Better research would mean earlier detection and better treatment outcomes

26/02/2026

Hello there...we are counting down!

Have you registered for the Parent Carer Webinar holding today?

Please register using the link below:
https://bit.ly/ParentCarerWebinar

YOU DONT WANT TO MISS THIS...🥰❤️

We look forward to having you with us for a refreshing and impactful time together.

This webinar is guided by lived experience and proven support pathways, designed to help carers move from emotional survival to sustainable strength.

23/02/2026

WORK WITH IT, NOT AGAINST IT

This phrase can also be interpreted as accepting the current situation "as if you had chosen it," then taking necessary action to change adapt or evole where required.

This is where the individual chooses "Going with the grain" rather than " going against the grain" working in harmony with the natural direction, structure, or flow of a material or situation, rather than forcing against it.

Sometimes we need to choose the path of least resistance, even when the little voice tells us to work against something

What does life dictate from you today ? Do you have the capacity to WORK WITH IT ?

20/02/2026

" NOT YET"

This evenings spotlight 💡Miss J. Alexander, the renowned runway coach and former America's Next Top Model judge.

Miss J experienced a severe, debilitating stroke on December 27, 2022, followed by five weeks in a coma.

The stroke left him unable to walk, requiring him to use a wheelchair. As of early 2026, he is still working on his recovery and regaining his ability to walk

If you have been watching the Netflix documentary you know i could focus on the drama👀, where those that should be friends ' Tyra' and support havent visited him yet- but i was more intrigued with use of the phrase " NOT YET" in reference to his disability journey

"NOT YET" is a phrase used to indicate that something has not happened or been accomplished at the present moment but may happen or be accomplished in the future

For some individuals disability can increase one’s risk for depression, anxiety, feelings of isolation, frustration with circumstances, and more.

For many sometimes the worst part is the fear that it will never get any better. The perspective that your life is worthless, and that there is no point to it all. It is so easy to feel a complete lack of hope when you live with a disability–especially when it impacts your quality of life or your constantly making comparison between your past and present, or others.

However Miss J saying " NOT YET" suggests the presence of hope. It is important that disability and hope coexist in an authentic way –without toxic positivity. Hope can support your emotional, psychological, social health and physical wellbeing

Miss J is todays reminder that timelines are not important. If you have a goal whether disability related or not, keeping working towards it.

With determination, motivation, grit, support and hope you will get there. NOT YET just means you havent reach the goal YET!! not that you wont reach it.

In the persuit of your goals remember you can reach the goal , or get close or find a different goal through the journey. However if you keep still and dont try, you may be missing out on a fabulous journey - keep striving

11/02/2026

What do you think is usually the reason or reasons ?

08/02/2026

FORK THEORY CONTINUED...

08/02/2026

STICK A FORK IN ME, I'M DONE

This phrase is an idiom meaning a person is completely exhausted, finished with a task, or unable to continue.

If you hear me using thus phrase, just know Im not done done. I'm just done for that day, hour, task complete and ill be back soon

06/02/2026

I am excited to announce that the PROJECT ME team with is back. This time with a FREE WEBINAR FOR PARENT CARERS

WHO / WHAT IS A PARENT CARER
A parent carer is an individual who provides care for a disabled child or young adult with SEND or additional needs.

They differ from typical parents due to the higher level of support, responsibilities requiree to meet needs of there child, due to nature of childs chronic illness, learning or other disability.

OUR GOAL
Provide community, support and a road map to clarity, healing, strength and personal leadership

REGISTER https://bit.ly/ParentCarerWebinar

JOIN US :
Thursday 26th February at 6pm