I Am Disabled NOT Dead!

Dec 10, 2023

Hello warriors, how are you?

I knew my chronic illness meant I would never make it any where near retirement age, I honestly was stunned that I lasted 16 years chronically ill and employed full time.

The only reason I survived was due to:

My rank
My employer being so support
The team around me
My customer being so understanding
Excessive, unreasonable adjustments

But, as I knew it would. It came to an end in July 2023. In preparation for this I tried to set up a business (twice) and FAILED. As I am just not well enough to do this.

In September 2022 I started a YouTube channel with the niche:

Living with chronic illness in a positive manner

This is not a photo from right now….my hair is greasy and I don’t have the energy to smile….but it has to show an image….so I have picked a happy one LOL:

The challenge was not many people have YouTube channels like mine, so I did not know what people that are chronically ill want from me. They were clear:

Help with PIP Claims (UK funding for people whose daily living and/or mobility is impacted by chronic illness).

So, I have focused on that, which really suits me as I LOVE training and development. Always have.

It normally takes 3-5 years to monitise (get advert revenue). In 15 months I have achieved this:

Am I happy today? No.

Yesterday I was in a Tribunal for PIP (Personal Independence Payment) and it was AWFUL. PIP just wears you down. Its a TERRIBLE process. Its so invasive and just fcuking horrible.

We do not know the outcome. It was heartbreaking to watch the individuals be put under pressure. At one point the questions on ONE POINT went on for about 30mins. They asked the same question in different ways over 10 times.

I just feel extra exhausted and sad.

BUT, I know I did my best and those involved did their best and that is all you can ask of yourself and others. So, I need to move on.

YouTube helped me do this.

My new career is coming together. Today when I logged on, a lady I have helped has WON PIP! I am so happy for her.

Another lady had a meeting with me at 0900…..I KNOW she WILL win her Tribunal.

People are chatting on YouTube and asking great questions. I received another booking for my consultancy. I have had a text from another lady checking I am ok after yesterday.

My dream of building a community for people suffering with chronic illness and those who support us IS WORKING.

I know I am feeling down as I have totally over done it……my pain is up and my fatigue is really bad. When I rest a LOT…..I will be soooo happy about this!

Thank you……ALL of you for your support. I could not have got this far without you.

Why You Should Use Thank You Pages in your Inbound Marketing ...

Achievement of the week:

Hahahaha before I started typing I started snorting with laughter…..my achievement is listening to those around me that I NEED to cut back.

I removed loads of consultancy options and I turned down paid work to help with the Tribunal. As awful as it was yesterday. My achievement is knowing 100% I am NOT going to do another Tribunal.

Why are we crap at saying ‘no’ or ‘sorry I cannot do that’?

I feel better about this decision as I think it has gone really well with the lady in the Tribunal as I type this. We emailed a couple of times and did 2 prep meetings. I can help in that way…..so I am still helping. BUT, I am not doing the submission packs…..everything. I just cannot do it. BUT AGAIN……Charlie……you are typing this FFS…..you can STILL help….BUT you cannot make yourself soooo EXTRA sick.

OK….I think I will need monitoring on this LOL.

It is an achievement. I only took it on as my consultancy took off…..YouTube took off and I got caught up in it! And yes, I really wanted to help. My achievement is I WILL learn from this.

Crap….we please subscribe and make sure I stick to this!

What has made me happy this week:

Talking to people I am helping:

And:

There are many more. It is making me so happy to see a positive community building before my eyes. People that are trying to encourage each other and give FACT based info.

Books I have read:

Er….crap none…..well, I did have to learn how to do this:

So I had to read up on it as I was too thick to follow the pictorial instructions LOL

AND the diagram says there are 70 er…holes. But when you count it there are only 65!!! That was a right head fcuk hahaha

But, I am sort of able to do it. I have had a pain increase….but as I am getting the hang of it….I am adjusting my position to reduce pain and so long as I don’t screw up the loop bit….the pain in my hands is minimal.

I would LOVE to have a hobby I can do!! Fingers crossed (just not mine LOL)

Arthritic update:

Yeah….I am worse. Whilst on a virtual call with code name: Survivor….I ended up on all fours on the floor, unable to get air in my body.

She was amazing! I could hear her telling me it’s ok…….take your time…..which really helped.

My mum got really angry with me as I never spoke to my Specialist about this……Code name: Elegant Lady….yes I need nagging LOL x

When this happens my air way is clear. I am ok. But its like when I swallow normal saliva (you know how we do it and don’t even think about it). Something catches……and in a split second thats it…….I am coughing…….choking…..but I KNOW there is nothing there.

My air way is clear. But I cannot get the air in. I have to keep myself as calm as possible (whilst choking) and try to calm down. Its very scary. I have heard about this happening, there is a medical term for it……obviously LOL.

It only happens when my fatigue is severe. Once it woke me up. I am going to speak to my Specialist about it. It scares me that this is my future. And I can only cough as I did over 18 months physio so I could survive COVID and cough to clear my lungs.

My ribs are doing ok, painful……but ok. This is the crap aspect of a degenerative disease. You know your future.

BUT, right now. I am OK. Yay me! I am VERY VERY lucky.

What I am looking forward to:

Ooooo I thought about something…..it was AMAZING having snow and NOT worrying about HGV’s, professional drivers…..extra dangers and risk of loss of life.

I could simply, enjoy the snow! (Well, excluding the additional pain due to weather changes…..but I am good at managing that type of pain now).

OK, what I am looking forward to; I am also well excited about Christmas! This is first time having Christmas off since I was about 17 years old.

From the 21st I am going to be OFF. I am well behind on gifts this year….so now I am through the two Tribunals, I can start focusing on gifts for my mum!!

This weeks guide:

Take care of yourself

Charlie

Charlie’s Newsletter

Discussion about this post