This Is Much Harder Than I Thought
Hello warriors, how are you?
This week has been a bit overwhelming. When it comes to the Government removing the PIP funding from people who have less than 4 points in every activity in daily living…well I thought it would be as simple as:
Get 100,000 signatures
Which would mean the specialists/activists get heard (I am NOT suitable to speak for us - we need to use the amazing people that are already doing this)
We live in a democracy so then change would be made
But its nearly as challenging as chronic illness. I feel like its going to be less challenging than trying to thrive when you are chronically ill, as at least there are procedures to follow and people have prove this works. So, it should be easier.
I was sat in a field looking at this view:
I then wet myself (only a leak/mini flood) as I overestimated my energy levels and I literally could not get up and walk back to the car.
So, instead of thinking about how to get the 4 point rule changed, I had to lay in a field and search my pockets for all of the kitchen roll I had on me so I could shove it in my pants and try and prevent it from being obvious that I had had an accident.
Graceful, it was not LOL. But you have to admit the view was stunning lol.
That was one of those times where I entertained myself, as I laid on my back padding my pants, I thought:
‘Why am I single? Oh yeah! Hahahahaha’
So, prior to the bladder/fatigue incident I was having a good think about our approach. Here is what I have learnt:
MANY people start petitions that do well to start with and fizzle out with nothing happening
MP’s get a mass of requests wanting them to sign petitions
Loads of people are raising concerns about the changes to benefits/funding
We have to break this cycle and make change happen. Here are a few of the action points:
Keep studying how people have made change in the past and use the methods that worked
Change the template letter to the MP’s (with current learnings)
Boost the petition as signatures are slowing down (still growing but not as fast)
Work out a strategy so we as a community can empower the MP’s without it negatively impacting their careers
I learnt a lot this week about how if a Labour MP does not ‘tow the line’ then it means projects they have in their ‘areas’ may not get the go ahead. Life can be made very uncomfortable for them.
So, the Labour people can’t really shout for us…..the Conservatives/Tories er…this may be a bit harsh but the general gist is: think we are scroungers. So, they are out. The Lib Dems, there are not enough of them. The green people are focused on Eco stuff.
So, how the fuck do we get this sorted.
The same way we win PIP. We make it unique to the individual and tell our stories in a strategic manner than enables them to raise this issue without pissing off their co-workers.
I am still figuring this out. Once I have a clear approach, my next challenge is how the fuck do I do a YouTube video that gets enough views that will result in action taken? With the ‘ACT NOW’ video, 16% of views signed the petition.
If I just do a video about MP’s people are not going to watch it. I don’t want to do negative click bait. Fucking hell my head is a bit rammed.
The good news is that I feel like I am getting a clearer view. And hopefully next week has less client meetings so I can focus on this.
Also I have meetings with code name: EMPATHY GODDESS who is just well educated and can explain stuff to me as I am so ignorant when it comes to politics. AND a meeting with a wonderful person who works for an MP who feels very strongly about this is and is giving me some guideance on the reality of an MP’s working life so we can be strategic in our approach.
Achievement of the week
I want to say a massive thank you to:
My clients – this week every single one of them worked with me so we could adapt my deadlines (Big shout out to TITAN & TEAM BON JOVI and lots of love to CUT THE CRAP)
YOLO & FAWKES – who are forever busy on emails, projects, the TEST and of course the petition
The wonderful people who have been educating me on the fucking nightmare world of politics
As well as all of this, I had my COVID jab this week. So, far it only wiped me out one day and I think part of that was due to working too many hours this week. (I wrote this on the 12th April, its now the 19th…..the COVID jab totally knocked me off my feet! If ever there is no newsletter, I am mainly bedridden.)
Another achievement, well kind of….I realised by working with my Physio….my mum TRIPLED my food intake. I am attempting to STOP being a ‘comfort eater’. Given a choice I would eat a vast amount of food, that my body does not need. I work hard to limit this. But when happy, sad, stressed, celebrating, any excuse at all = a treat of food.
When I was able bodied, the treats would be different….now food is something all of us (chronically ill) can have and we are ABLE to eat it (most of the time). But its NOT good for us as most of us gain too much weight in the first 5 years of chronic illness. And it make us feel like shit.
I asked my mum to cut back, but when I do she gets a smidge frustrated. Hopefully from tomorrow we should be back on track as I think I gain another 6lb!!! FFS
I wanted to be back to under 11 stone by July. It does not seem that this will be happening. But I am learning so that’s good.
I was sat here, throwing a ball for Ollie. I was reading a book on my phone and I looked up….can you spot Ollie? Having a black dog sometimes sucks hahaha (she IS in this photo):
What has made me happy
I had amazing conversations with:
SPECIAL FINGER
ROCKING UNICORN
MY FLOOR BUDDY
OUR FUTURE
My bird feeders have been really busy, I love watching the birds. They remind me to keep going, no matter how tough things are, they never stop singing.
I do feel a weigh off my shoulders now the TEST is finally launched. Admittedly it is the worst received video I have ever done. I just had to remind myself that people do NOT need to by the test. I still stand by the fact that it’s a game changer and I 100% would have brought it when I first had to deal with PIP. To be able to know where I scored from the off would have been massively helpful.
A big thank you to:
I am going to use it to buy a fire extingusher as I do worry about being in a wooden house with no safety measures! xx
Crap, I keep forgetting, can you subscribe to our Instagram page….link below (if I found it hahaha):
charli3sjourn3y
Books I have read
More terribly fantastic romance LOL. Now some are about females:
This one is pretty good as Jewell is an amazing women that is like a super hacker….its still a full on romance with a fit as fuck bloke in it….and all of the stories interlink. It is NOT educational at all…..just very relaxing, easy reading.
Arthritis update
I managed to not crash this week, well until after my COVID jab, but I am not counting that. I messaged John (my physio) this afternoon. Many people with my condition also experience an back condition as well. Well, I decided I am NOT fucking having it. Life is hard enough as it is, so NOPE. I refuse to have it.
For the past few months, I keep getting back pain that takes my breath away. I can’t predict when it happens, I think its linked to turning slightly. But the past month, I am pretty sure its been every day, about twice a day. So, I finally admitted…..something is going on.
I think in my head, I was hoping if I lose the weight, it will ease the pressure and hopefully the symptoms will reduce. This is still my goal. But in our next session, we will talk it out. I am still not well enough to actually do my physical physio exercises. We are trying to get two weeks of no crashes before we start. That has become a challenge.
If you noticed last weeks newsletter was missing, this is it. I had my COVID jab and thought I would be ok….as I have been for the last couple. But this one….nope. Body shut down FFS.
PIP
When is it time to stop when it comes to PIP. Recently I have had 3 people where what we needed was someone to be able to speak for them. If they speak for themselves, they get in verbal rabbit holes that goes against their claims. EVEN THOUGH the reason they go down rabbit holes IS due to their conditions.
It still gets used against them. So, when should someone stop. I always advise people that it has to be their choice. Its THEIR life, THEIR claim. And I support whatever is best for them.
What is frustrating is trying to find a solicitor that will help. They are all overwhelmed. Which keeps me coming back to: we have to get it right at the claim point.
I am working on a contingency just in case we cannot work with the Government on this catastrophic 4 point rule. This video will really help people.
What I am looking forward to
I really want to get my head straight on the next steps regarding the 4 point rule. I need to reduce down the amount of days I am doing consultancy. I am trying to limit it to 3 a week but it doesn’t seem to work.
My mum is going to try and spread grass seed down in the bog area this week so hopefully the plan to minimise the levels of MUD next winter are on target.
I got invited to a christening, there is no way I am well enough to go. I can’t do social events, due to my limits. BUT I can send gifts….I am so fucking excited. Actually as I type this I have just remembered some things I ordered have arrived and I haven’t opened it yet…I wasn’t well enough earlier….oooooooooooo got to go!!!
Its currently bank holiday weekend, so far next week I only have one client meeting. I need to get up to date on YouTube. I have about 5 videos that should have been out already relating to the 4 points. I think one, maybe two are filmed….but I am not sure!
Next week I am going to aim to catch up, this will be a big weight off my shoulders. I wanted to film today (Saturday 19th April) but I did some admin housekeeping as I was feeling like its all out of control. The Green Paper has just totally fucked me over:
Work load
Stress levels
Everything
So, I did a major clear out on paperwork. I have 70 recordings that are NOT labelled in my ‘videos’ folder on my laptop. I need to sort them the fuck out and confirm my starting point so I do not duplicate work. But before that I need to sort the template letter for MP’s as I need that for loads of the videos.
So, today is: find my starting point day. Monday 21st will now be my YouTube day! I am writing this like its a choice…..my body is shutting down again so I have to go back to bed. You know when you try to make yourself believe its a choice? LOL
This weeks video
Take care of yourself
Charlie
P.S WEBSITE:
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