January has been the Januaryiest of Januarys.



It being a five-week month means my assessment period for UC gets messed up, as I’m paid twice in the assessment period. This makes it look as if I earn double what I actually do. Because, God forbid, the government should rectify this issue in their beloved Universal Credit for those it affects.



Having a December birthday for my child also means January is a struggle, paying back credit cards and loans.



It just seems never ending at the moment, doom and gloom all around.

Hi.

Sad day 😞

Had council workmen in the flat for most of the day, installing a fan that circulates the air to prevent damp and mold building up.



I have no control over it with a switch.



It runs on electricity and will cost me more in energy. The engineer plugged the drill into my electricity supply. My prepayment meter has used an extra £7 today. It may not seem much, but it is much more than I normally use.

So frustrated. The council finally sent a workman to install a disability-friendly toilet after a year and a half of repeated, embarrassing assessments (including being asked to repeatedly demonstrate getting on and off the toilet so they could see my mobility struggles—fully clothed, of course, but still very invasive, humiliating, and dehumanizing. I wasn't a person, just a cost issue the council wanted to find a way not to pay for. I suspect the only reason they didn't deny it in the end—handlebars were installed within a week of the initial OT assessment—was because my occupational therapist kept pushing them. I suspect she reminded them it's a legal responsibility).

Anyway, it finally got approved, and I was informed just last week that the new toilet would be installed yesterday. Only when I asked about the floors (which had been a concern I'd repeatedly reported—under the vinyl, the wood is spongy, and the walk-in shower is unsafe, unlevel, and leaks water, hence why the floors are spongy from rotten wood—I mentioned it at every embarrassing assessment and every time the council had to send an emergency plumber because the unstable floor made the toilet wobble and often disconnected from the pipes), the plumber told me he hadn't been informed about the floor but not to worry—he’d replace it as he put the new loo in.

My gut told me it wouldn't be that simple. My gut was right, but not in the way I expected. The plumber came yesterday while I was still struggling with a bad fibromyalgia flare-up due to a tummy bug a couple of weeks ago. He lifted the vinyl to see that the wood was basically mush, then started lifting the rotten wood mush up to find asbestos tiles underneath. So, work had to be stopped. His manager was called to assess and confirmed—yep, asbestos tiles. And they were damaged, as the rotten wood had been screwed into them and covered up.

The plumber wasn't happy. He rang the council, and I heard him chew them out over it. I didn’t hear everything he said, as he left the flat while talking, but as far as I’m concerned, there's no excuse for asbestos still being in a council home these days, it should’ve been sorted long before I moved in. I did overhear the plumber tell them again about the shower floor, saying it’ll just cause more work down the line if he’s not allowed to fix that too.

Within half an hour, a housing officer rang me to say council surveyors were coming to assess the situation, and I'd be put in emergency accommodation while the work was ongoing (since, with my disabilities and already being unwell from this fibromyalgia flare, it wouldn’t be safe for me to stay there). Within another hour, I had about 7 or 8 men in my flat, plus the original plumber (who was great, he let me rest on the sofa, dealt with the different people, reassured me often, and when I was told it should only take a couple of days, he informed me that while it should take days, it would probably take a week, maybe two, mostly due to waiting for work to be assessed and approved).

One of the surveyors mentioned that the flat should be due for a full kitchen and bathroom refit soon anyway, and he’s going to try pushing for the bathroom refit to be done while I’m already temporarily housed somewhere safe—saving them from having to repeat this process in a few months. Still unsure if that’s actually going to happen, but I do know the asbestos tiles will be removed and the floors fixed. Hopefully, the shower floor too.

Within another hour, the housing officer was back on the phone. She’d found a care facility for vulnerable adults for me to stay in while the bathroom is being fixed and even arranged a taxi to move me there, plus £10 per day to cover food costs. She’s been told to expect me to be here for ten days, but she booked the room for two weeks to be safe.

And I thought—far from ideal, but at least it'll be safe. But I’ve had negative experiences in "supported" (I say sarcastically) accommodations in the past, and while everyone here seems friendly so far, it still set off my cPTSD and dissociative symptoms. Once I arrived at the care home yesterday, I completely blacked out until this morning, dissociated from the stress as well as the pain from the fibro flare-up.

Just resting today. Ordered a small food shop to tide me over—only got a microwave, kettle, and small fridge, but that’s fine for a few days. Got some pot noodles, sandwich items, and chilled microwave meals (boy have they gotten pricey! I haven't bought any in a while, preferring to batch-cook on good days—though those are becoming less frequent—and freeze what I can for bad days. I was shocked to see nearly £4 for a refrigerated fish pie for one from Asda online).

Once the asbestos was discovered, I was impressed by how quickly—and for the first time ever, when dealing with the council about anything related to my disabilities. Respectfully, they handled getting me somewhere safe and supporting me through this stressful situation. And the plumber who came out was amazing - reassuring, honest, and didn’t belittle me or act like I was incapable of understanding. So that was a positive experience.

But it’s hard to feel positive right now. I was assured the flat was safe when I moved in. I even asked if it was due for an upgrade soon when I visited before moving in summer 2023, and I was told it wasn’t as old as it looked—"maybe ten years." But I know for a fact that back in the late 90s/00s, councils were made responsible for removing asbestos from council homes—we had two weeks of work done in my childhood home because of it, and I remember being moved. So, it should have been done long before I moved into the flat. Instead (to paraphrase the lovely plumber when he talked to the council), "the last workers just covered it up—lucky it hasn't caused any major issues, especially with the wood rotted from the leaking shower base."

I texted all the neighbors I could to suggest they get their bathrooms checked—just in case. All these flats are the same, all aimed at vulnerable people—mostly elderly or disabled, but some young families or single tenants in upper levels. The plumber agreed that if my flat has asbestos, most of them probably do.

Then there's the anxiety that comes from being a disabled and vulnerable person who needs to be independent but has had horrible experiences with so-called supportive services. It’s a fear many disabled people have—being put in a care facility due to some emergency and not being allowed to leave. I know logically I’ll be back in my flat in a few days—weeks at most—because while I’m disabled and have had poor experiences, I’m not incapable of independent living and manage my disabilities well. And let’s be real—the cost of trying to force me into a care facility when I don’t need one (but others probably do) wouldn’t be worth it to the council. Lol.

So, I know I’ll be going home soon.

But that anxiety is still there. That fear. Because as a disabled and vulnerable person, you never know when your next human rights violation will happen—you just know there will be more at some point, and you must prepare accordingly.

One of so many things disabled people face regularly—especially those whose disabilities are "rare" mental health diagnoses or poorly understood invisible chronic illnesses. It’s exhausting, always having to defend and advocate for yourself.

And embarrassing—I had to email my GP, explain the situation, and ask for more pain meds because I know this stress—while still not recovered from the fibro flare brought on by illness last week—will likely worsen or prolong my flare.

Every day with disabilities is a constant juggling act—maintaining current symptoms, preparing for future symptoms, and cleaning up from past symptoms. It’s exhausting and never-ending.

This week, I’ve set aside for resting, but next week, I have some workshops and community groups to attend—if I can.

Isolation is the worst thing for mental health when unwell, but with the costs of buses, food, and bills these days—who can afford to go out often anyway?

Hi there!

Today was not that good of a day, but the weather was nice. I took my baby to the GP for her 4 month-old injection, and she is crying. It's so bad, really feeling sorry for my baby.

Back to school! Bus fares up & now talk of school meals going up also but wage remains the same it's getting out of control how are we supposed to find a way to cover everything also using so much gas due to how cold it is, I know the weather is out of anyone's control but just seems to be 1 thing after another.

Also having to switch from Asda delivery for groceries (my disabilities mean I can physically shoo so do the big shop online twice a month with small local stores in between as needed) to a different store. Cos the prices are comparable to M&S these days but while the delivery drivers are super helpful, the subs and unavailable goods have become too inconsistent for me to keep using them. So I've spoken to different people in the disability community to find good quality goods are cheap prices but consistently (like if I order bread, cheese n butter, an unsuitable sub for the bread is more cheese you know, bread's more important than cheese and why not sub for a different loaf FFS). Most of the feedback said ocado is best for quality, support and product availability. Other suggestions were Sainsbury's or Morrisons. All stores that in the past I'd have laughed at for being luxury or fancy stores. But I did a basket comparison with my usual goods and Morrisons and Sainsbury's both came out almost the same as Asda, and once I join nectar card the Sainsbury's one became cheaper than Asda. Ocado was only about £10 more for my usual shop. That's nuts to me. I suspect it's largely cos Asda stopped selling their essentials range online so had to buy fancier items, to force online shopper to spend more.

I bring this up as it's not as aspect that people think about much. On the scope website they have forums and chats there disabled folk can get advise on issues related to living with disabilities. Their website has pages upon pages of advice on various things, but the lack of options for those forced to rely on online deliveries and the costs associated with that aren't fully realised amor explored anywhere. Cheap stores are mostly only cheap cos they're not managing online deliveries much so can keep staff numbers down more, like Aldi n Lidl. And lots of aldis and Lidls in my town, but all take half hour to get to from my address by bus, an hour walking each way, so cos of my disabilities I'm forced to pick a shop and stick to it. No shopping around for cheapest prices or checking for yellow labels when online shopping. It's called the convenience costs, added costs if the convenience of everything being in one spot. But its only convenient for those not forced to use those services. Glad it's available but I often think with all the tech available these days, there should be better services available for the disabled and poor.

I'm getting really worried about my rent going up this year. It keeps rising every year yet the local housing allowance is frozen for this year! Why won't the government address this. There's over a £250 difference to what the government say I should be paying to what the going rate is in this area. My landlord is trying to move my rent towards the higher end of that. It's frightening. I've painted her room and made a home for us, I can't afford to move. Even if I did, how can I afford it with only £475 LHA???

We are totally burnt out. My partner has used up all his annual leave for the tax year taking time off to help me out with the kids in half terms, taking me or our smallest to hospitals and looking after me when I've been really poorly. We shouldn't be in this position but next time he'll have to call in sick. Too many systems are broken and the financial help doesn't equal a wage so we are stuck either way.

Feeling the pressure, now we are so close to Christmas. Financially, this is the worst time of year for us with birthdays, Xmas, insurance renewals and heating costs. Been struggling to sleep then struggling to stay asleep as I often wake up worrying about things and the worrying can spiral. I need to remember and break things into one strategy at a time.

My sons monthly pass for highschool was 33.00 when he first started highschool he is currently in year 8 and now I've received an email stating that it's going up to 42.00 it's a nightmare.

It's so cold today. My life hasn't gotten much better lately. I'm quite worried about money, I'm afraid I and my baby will go hungry here. Life is so difficult for me right now. I don't know what to do to improve. Currently my baby is almost 3 months old.

Hôm nay trời lạnh buốt quá. Cuộc sống gần đây của tôi chẳng mấy tốt lên. Tôi khá lo lắng về tiền bạc, tôi sợ mình và em bé của tôi sẽ bị đói nơi đây. Cuộc sống hiện tại thật quá khó khăn đối với tôi. Tôi không biết nên làm gì để cải thiện hơn. Hiện tại em bé của tôi gần 3 tháng tuổi.