26th July 2022

I’m very proud that I survived the UK heatwave without a migraine or passing out or throwing up (though I may have just saved the migraine for a few days later). With my various health conditions there was definitely a non-zero chance I’d end up in the Emergency Room, but I didn’t.

My self care has come a long way the past few years

I did end up sleeping on the sofa for two nights in the room as my bedroom is a converted attic and just collects heat like nobody’s business. The first night I tried to sleep in my room, but Sherlock kept panting, so I let him out so he could sleep downstairs, but he kept coming back up to cuddle. And I wasn’t sleeping anyway so I gave up and went downstairs.

Tuesday I just spent most of the day in front of the fan. It was too hot to play computer games, even, I couldn’t think straight. I just lay there.

I was getting up at 5:30am to walk the dog but even at 9pm or 10pm it was still too hot to walk Sherlock, but he needed to go toilet, so I ended up picking him up and carrying him to a patch of grass that was safe to walk on, but even though we were only outside 10 min he was still panting but the time we got home.

I did have a slight hiccup where I ran out of standard ice cubes mush faster than expected trying to keep the dog cool, so I went Aldi at 8am on the dot to try get some, but they were out. I ended up paying £5 and deliveroo-ing a single bag of ice for Sherlock. If it had just been me I probably wouldn’t ahve paid that, but. Got to keep him cool.

~*~

My work has announced an additional 4% pay rise, on top of what they’d already announced a few months ago. I dont think it gets up to 9% still (UK inflation, by some measures)(some measures have it higher) but I appreciate the gesture. Many workplaces are doing less.

Unfortunately I got declined for the fancy tea shop job. I need to start cracking down on job hunting I think

~*~

I still haven’t got that doctors letter confirming the EDS diagnosis, I keep chasing them about it. They told me I’d have it within a week. I need to add it to my PIP file.

6th July 2022

I thought I’d write a brief summary of my trip to London haha… it was mostly to keep me entertained on the train to be honest

~*~

12pm:

The train ticket turned out more expensive than expected, but I didnt know my return time so I had to buy a day return at the station

It’s not ideal but I just took the extra money from my Human Groom, Clothes, and Birthday of the Month categories (it was about £60)

3pm:

I bought a ticket to the slightly wrong station. I bought for St John’s (National Rail) instead of St John’s Wood (underground)

A nice staff member let me out of the gates anyway, I’ll just have to buy an Underground ticket on the way home

Arrived at the hospital 45 minutes early lol

5pm:

I’m out of the apt now

That was almost anticlimactic lol didnt take long at all

As expected, I have hEDS

I’m not sure how I feel yet. This was extremely expected, but I did the thing where I focused so much on getting the diagnosis that I didnt give enough (any?) thought to what comes next

£500 I’ve spent today, not including a morale boosting costa

7pm:

Back into my home city. Getting a celebratory McDonalds on the way home for surviving another train journey.

~*~

2 days later:

Feeling surprisingly down. I dont think I gave enough thought to what to do after I get the diagnosis. In a week or do I’ll get a letter to attach to my PIP application.

In the immediate this doesn’t change how I live my life. It’s not cancer, this wont affect how long I live. But it’s also not something that gets better. As nice as it was to be taken seriously, it also would have been nice to be wrong.

3rd July 2022

I literally called the London EDS doctor’s office yesterday to confirm my appointment tomorrow, and I am still plagued by the idea that somehow I’ve got the day wrong, because I dont have a piece of paper or email I can refer to and reassure myself

My brain keeps trying to activate ADHD/Autistic “waiting mode

I dont need to leave the house until 11:30 tomorrow

~*~

In regards to the house/flat search, unfortunately theres not many properties out there in my criteria so this is probably going be something of a longer search

I am looking for a flat (or bungalow I guess) under 90k, and I want to remain relatively close to city centre. Within 2 miles of my work is the search I’m putting into most sites.

I have a dog, so the building owner/leaseholders would need to allow dogs in residence.

And anything that says “cash buyer only” or already has a tenant in, I can’t do

This leaves about 3 properties ha :/

28th June 2022

Apologies for the brief absence, life went a bit stressful, and then I had a four day migraine that I’m only just coming out of.

~*~

I’m starting to look at housing options after an occupational therapy visit, they reckon I need some handhelds on the stairs but we need landlords permission to install those.

But so far the landlords response has been… lukewarm. And they’ve said maybe its time for me to look for a house better suited to my needs.

If I went and rented somewhere else it’s going to double my housing expenses easily and the only place to take that from is how much I’m setting aside for a house deposit 😦

On the other hand if I raided every fund except the job loss fund, I’d have approx 5k, which miiiiiight do a deposit on a small flat?

~*~

When I say “raid every fund” I do mean EVERY fund (except job loss). New Laptop. Canal Boat Training. Christmas. Pride. Gym/Swim. New Mobile. Career development study. Everything.

It would be nice not to constantly worry about being kicked out.

I did a couple of mortgage calculators from a few banks whilst walking the dog… With an annual income of approx 22k (I didnt have bonus figures to hand but the bonus isn’t guaranteed anyway) and a deposit of 5k, the banks that would do 95% mortgages would lend me up 90k ish

I’m not seeing any 2bed flats in that price range so a lodger probably isn’t doable

One thing that has occured to me, mortgages are fixed for 2-5 years ish, on the assumption that you will not move in that time. 2 years, fine, that can go by pretty quick, I’m not going to put any expectations on that timescale. But 5 years… what if in that time I wanted to move in with my partner, or my partner move in with me.

So I should think about that when looking at properties in terms of space, need to keep an eye out for a flat two people can live in without falling over each other.

It would probably balance out as more expensive than my current situation, but if I had to move, buying might be cheaper than renting? Unless a boiler breaks or something

Its all going to be more expensive than my current setup. But what’s the least more expensive

Mortgage payments *could* be less than my current rent, but not by much less as my rent is currently low

Mortgage payments would be less than rent elsewhere. But I will have to pay bills, council tax, etc. But I wont have to save up for a deposit anymore. But I will have to replenish savings.

~*~

The way I see it: it looks I am moving in the next year. I am have some choices about where and when to go.

My options are essentially to rent or to own.

I’ve been looking at both options, and both options cost roughly the same.

If I rent, I will not be able to save any more towards my house deposit.

If I buy, at least I will be on the property ladder, and it will be a lot easier to make adaptations to a property I own.

But then if interest rates keep going up, what if I get on the property ladder just to fall right back off a few years later?

12th June 2022

Just a mini update this time. Not much been happening around here.

~*~

I’ve not had any overtime last week and potentially next week too. You need a minimum of two people to enter the branch early, and the only two people besides me willing to go in early are both off sick. Once the laptops are introduced at work, overtime will be much easier to do from home though.

~*~

That £7 shopping trolley broke on its first use :/ I did manage to find some money for the £30 version but I’m not sure if the dog food will last until the end of the month, so I’m holding off for now. If I have to buy dog food earlier than planned I’ll use the shopping trolley money.

8th June 2022

Sims 4 werewolves have been announced! I’m really excited for them.

I do technically have enough for the pack, but I’m wary of another wedding stories disaster so I might let other people play test the pack for me first…

I’m worried that the pack will be essentially non-functional upon release due to massive amounts of bugs

~*~

I finally signed up for gym and have been swimming once. It was kind of bittersweet because I used to be really good at swimming, but now I’m… not.

I’ve only been swimming once (now twice) in a decade since trans body image issues kicked in. I also just dont have the stamina in general that I used to. I wanted to stay in the water for longer than half an hour, but I was getting too tired to swim by the end so I ended up doing walking laps on the pool which I saw someone else suggest in an EDS group.

I think because I’ve been told that swimming is an easier exercise, I may have conflated easier and easy in my head, and didnt into account the “exercise” part. It did take me months to work up to jogging for half an hour. I just way overdid it and was kind of reduced to mush for the rest of the day.

I was also having trouble holding my breath underwater for some reason. I just kept panicking slightly any time I ducked underwater, which I havent done since I was very small. I’ve bought sold swimming goggles, in case chlorine is the issue, and some dive sticks to practice with.

~*~

I did buy that Etsy shopping trolley in the end, its arrived. Its smaller and flimiser than ideal – but it was £7 to be fair – but it should be a good practice one whilst I save up for the good one.

~*~

I’m making progress on the PIP application, my partner is helping me review the answers to each question and has sent me away with a whole bundle of notes and things to talk out. I did buy a guide from a website that seems/seemed useful, but it didn’t tell me until after I bought it that the guide is 108 pages long! So I havent quite been able to tackle that just yet.

28th May 2022

The other day I was telling my therapist about stuff I was struggling with, in regards to the PIP application

And I guess I hadnt talked too much to him about that before because he was just looking more and more concerned the more I talked

And then I was talking to a friend who’s gone through the PIP process before and after we’d been talking a little he told me I “definitely qualify” but at that point I’d only told him a third of the things I’m struggling with

So those sure are some emotions. Its quite possible that I’ve been struggling more than I’ve given myself credit for

~*~

I’ve read that apparently It can take up to 6 months from when you first contact the DWP to when you get your first PIP payment

I’m just going to have to go ahead and buy a monthly bus pass from now on. I dont have the energy to constantly be doing calculations on whether it’s most efficient to buy a single or a day ticket

~*~

I took the money for the phone power bank from my “new phone” category, so my phone will just have to hang 1 month longer than originally planned – but I’m not concerned about that. Worse case scenario I end up on another contract if my phone cant live that long.

~*~

In regards to this Crypto crash – I guess I’m technically affected by it, as my Bitcoin has fallen to £8.95 from an investment of £15

If anything, I think may be a good time to buy in? I dont think it’s going anywhere, I think it’ll recover eventually… but right now my focus is on EDS and PIP, I dont have the brainspace/funds for anything else

22nd May 2022

So I’ve booked an appointment with a private doctor on Monday 4th July, and here’s what I wanted to do:

Travel down on Sunday, stay overnight in Travelodge or whatever, appointment on Monday, travel back on Monday evening. Unfortunately both those train tickets are very expensive for some reason.

By comparison:

A same day return is £110

Or if I travel down on Monday, do the appointment, stay overnight somewhere, then travel back on Tuesday, the train tickets are £20-£30 each. Accommodation prices very, I’ve used £80 as an estimate which seems about middle of the road.

I really didnt want to travel down the same day as the appointment, I’ll be wiped, but I think I’m going to have to at those prices

I have decided to buy a phone power bank to keep my phone running on the journey though, and I am buying a train discount card.

I don’t have much to say on finances this week, I’m just low on energy and focusing on this PIP stuff. My partner has been through the process before and has suggested I keep track of all my symptoms and struggles each day to show how I need help. You know those positive thinking exercises where you sit down and write three good things that happened each day? It’s essentially the opposite of that. It’s pretty depressing.

18th May 2022

My salary and payslip finally came in – the overtime came out to about £116 pre-tax, and my salary was about £70 post tax more than last month. It’s been hard to figure out an average salary this year, each month has been so different.

~*~

I’m upset about having to apply for PIP. I was just hoping to avoid that application process, I’ve seen people go through it, it’s a shit process. And theres a good chance I’m going to have to confront and write down all the things I’m struggling with, only to get denied.

Instead of “batch cook meals” I am “eating frozen meals due to an inability to cook”, and I’ve got to write about my selective mutism/autistic shutdowns. And all I wanted was a damn bus pass. I just need to get the appointment stuff sorted with work, then I’ll start downloading forms and whatnot.

17th May 2022

A thought occurred to me, after the main celebrations were over, that if I take my remaining divorce fund and add it to this mystery credit (assuming I get confirmation that it is what I think it is, and I can keep it)… then that might be enough for a private EDS referral/diagnosis. I have £467, the person I know who previously went private spent £300, but there’s also train tickets and hotel.

However that means I cant use any of it for topping up slightly underfunded yearly goals. Decisions decisions. my initial thought was to wait until June to decide, see how I can tackle my yearly goals next budgeting day, see how I feel.

Unfortunately this morning I spoke to the NHS Social Prescribing team re bus pass etc, and all the mobility passes etc all hinge on a successful PIP (benefits) application. It’s kind of a Gateway benefit, once I have that, I automatically qualify for a whole bunch else.

She was saying I could try apply for PIP without a formal diagnosis, but… we all know the government. Time to look into private diagnosis I guess! So I’ve booked something in for July, I may have to move the exact date because of work. And, yeah, I was quoted £300 for the consultation.

Google maps says it’s a 3 hour train journey, but it’ll probably still be a 3 day journey for me, I’ll need to go down the night before or I’ll be too exhausted to talk to the Dr on the day. I can come back the same day after the appt but I’ll be dead the day after.

Luckily, the mystery credit was confirmed to be mine. Apparently they emailed me last November and told me I had 6 months to exchange it for shares, or they’d just give me the cash, but every email they’ve sent me this week ended up in spam so I assume that also happened in November.