We Went Out!!!

Hello warriors, how are you?

Yes!!!! Finally, very slowly things are getting better! Thanks to an old friend who still looks as young as she did when I fucking met her over 20yrs ago FFS lol! My mobility scooter is in place and Ollie and I have worked on our skills so she is safe with my driving abilities!

We started off just practicing outside my house, then we went to the field and now are being consistent.

It’s so much better in the scooter, I feel much safer in that than I do driving my car. And Ollie gets more walking time. Matilda wants to come with us but her arthritis has got worse and just pottering around the garden can cause her pain. When I get more confident I will train Matilda to sit in the basket at the front or on my lap. But for now, Ollie and I are improving our skill base.

Also, the other day when I was trying to get out of the field, I got the scooter stuck. Had to get out of it, operate it manually and it kinda flew into hedge…..slightly….well the front quarter of it was defo in a hedge. I nearly have the hang of the pathway at this bit now as there are big potholes in it that we have to avoid. The angle of the scooter is a bit scary as they do tip over, but, again I am getting the hang of it.

Having a second hand mobility scooter means you need to learn a lot. For example, if the prior owner had the battery for 12-24 months it might need replacing. If the scooter was sat in a cold location not used very much, the battery might not work properly. It took us a week before we figured that out.

Then I used AI to get the correct batteries off Amazon = wrong fucking ones. So we took it to AbleWorld for help.

Yesterday we went to go out and the green light won’t come on. It turns out the ignition switches in these don’t age well, so it could be that as the battery is fully charged.

If you are thinking about a scooter for someone, do NOT just buy one. Test them out in a supermarket first, you need practice runs in them and they are fairly good but batteries can run out really quickly and you get stranded miles from the entrance.

Then when you get one, you need to really consider the type. My friend got me one that packs into the car. I can’t fucking lift it, but am really chuffed as if I go somewhere with someone, this gives me so many more options on locations.

So, I am still learning and I am really shocked by how challenging its been and how much needs to be done by an able-bodied person due to weights!

I am sooo happy!

(When my friend came round and helped with the chicken wire, he looked at Ollie and then me and said something like: she is much chunkier! I replied with: we both are! True friends LOL. I have lost 10lbs so far. Still about 1.5 stone to go).

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Achievement of the week

I had to book a carer for my mum as she needed to get to hospital, and I am still not well enough to do things like this. It was a really good learning experience as we now know, my mum defo does not need an actual carer.

She has progressed so much, she just needs a companion to travel with. Someone she can chat with.

I think I said that our housekeeper can’t come any more (as she was driving for an hour to get to us). We are trying to manage on our own for a couple of weeks to see how we do.

And we are coming into summer, so we are hoping we both continue to improve. We will see how it goes.

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What has made me happy

My mum and I tried to pull up the chicken wire that I tripped on, it was put on the decking around my shed as in frost/icy/snow the decking was so slippery I would get trapped in Gertie (my shed). It was amazing, but it started to break due to how much we walk on it and when it starts to break it just keeps breaking:

The removing of the chicken wire did NOT go well for my mum and I….obviously LOL.

A friend popped round with my car (now fixed) and helped…thank fuck!!!

I feel so much safer now the trip hazards are removed (the big bits tripped me and the little bits of metal scared me about Ollies paws). I will need to work on a new plan for this coming winter.

Also, a massive thank you to the lady for sending these xx

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Slice of Heaven – My Shed in Stoke

My automatic hoover could not cope with the thick winter rug I had down so the housekeeping was getting so much worse. The rug is now up and I have down a very er…..bright sort of rug thing my mum got of TEMU. Its fine for now and at least the hoover can cope with the space as it was gutting to see it get so dirty in here. It messes with my mental health if my home is not clean and tidy.

Also, my mum (due to her stroke) got OBSESSED with my new little fridge (my old fridge died). It was too low. But I just wanted to leave it as it was to save money and as I could sit and access it. But every, fucking day she would come up with a (rubbish) solution and she kept going on and on and on and on. In the end I spent £50 and ordered a fridge stand with two draws. I don’t like it as the draw are material (which I didn’t realise) and I liked having the fridge low. As it looked more spacious in here.

But, it IS easier for me to use and now with the draws I have all of my kitchen stuff accessible. I have finally removed my chunky cutlery from inside my fridge (fatigue solution) and moved to them the new storage thing.

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Arthritis update

I had a bit of a wobble, I think I wrote about it last week. I scared myself with my thoughts:

I just want to be left alone.

As soon as I got that thought a lot, I realised I needed help. I have had to increase my emergency steroids again. I am seeing my specialist this week so I am really looking forward to that.

I went over my data (where I track my pacing = steps, pain/fatigue levels, ability hours, pain meds, etc) and I can see since 2024 I have had a number of major declines:

- After travelling to get Ollie qualified as an assistance dog

- After my mums stroke

- After the MRI

For me, all of this means that (fingers crossed) my disease is not winning. Even though its been over a couple of years, the root cause is external. We know right now that the past 5 months horrendous experience is due to a flare, but again that was induced by laying flat.

For me, this means: HOPE.

Hope that I can regain my life to what it was. Where I was able to get dressed into nearly normal clothes daily, wash and brush my teeth EVERY day. Take Ollie out. Work. I really hope I can get back to this. I will let you know what my specialist says.

I have prepped a 2 page document for him include some graphs showing my decline from MRI and 2024-current steps.

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PIP

The book I wrote:

How Not to F**k Up PIP

All photos has been submitted, the book is with the ‘type setter’ and I should get the first copy of it in a couple of weeks. Then we should be ready to launch it on Amazon mid-May (2026).

I really think this book will help (hopefully) hundreds of thousands of people. Then when the Government develop PIP (2027 potentially), I can just update the book with the new changes. So, the people who are truly suffering can access the funding they desperately need to survive. I would be fucked without my PIP funding.

Here is a link to the Launch List if you are interested in knowing when the book is for sale….

https://shorturl.at/Io2md

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What I am looking forward to

- Going out with Ollie!

- Spending time with my friend (admittedly we are going to hospital, but the drive will be great, and it will be nice to have someone objective, with a brain, in the appointment)

- Going out with Ollie

- Mother’s Day!!

Ooooo Mother’s Day….ok. I ordered my mum her favioute outfit that she wears all the time off TEMU. The first one I got her was bright yellow (due to her love of bees). I never meant for her to just wear that, I meant for it to be like PJ’s so UNDER clothing. Nope, she wears it all the time and hates it as she says she looks like a banana. Which she does hahaha.

Then for Xmas I got her it in black. She lives in them. For Mother’s Day I ordered another one so we can phase out the banana outfit LOL.

But more importantly, she has been asking to go back to the carboot (where we use to volunteer with the womens shelter charity, every week). We have not been since pre Nov 2025. I have moved my consultancy days so we can get a taxi, potter and then I can recover for a couple of days before working.

She doesn’t know yet. She has cards to open, one now as she likes to leave it up for a while. One envelop to open on Thursday 12^th that explains we are going to the carboot…..so she can get excited and look forward to it. Then the actual Mother’s Day card and gift for Sunday.

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This weeks video

This video is critical for people to watch if they are applying for PIP/ADP:

Take care of yourself

Charlie

P.S

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