Boiler isn’t working. Had no heating for 4 days. But luckily there is hot water. I kept saying I would get boiler cover but didn’t get round to finding a good cover. I’m feeling a bit stressed as call out charges are high and don’t know how big the issue with the boiler is.

I want to share my heartfelt concerns regarding my 10-month-old daughter, who has been diagnosed with Thalassemia Major. This condition has significantly affected her health and has taken a toll on my mental well-being as her parent.

At such a young age, my daughter is encountering numerous challenges. It truly pains me to see her in discomfort and to observe the frequent medical treatments she requires. As a parent, it’s incredibly difficult to witness her suffering, and I find myself constantly worrying about her future. The potential complications from her condition weigh heavily on my mind.

The emotional strain of her illness has been quite overwhelming, impacting my mental health in ways I didn’t expect. There are times when I feel powerless and adrift, trying to cope with my own emotions while remaining strong for her. The uncertainty surrounding her health and the ongoing treatments only add to my stress, leaving me feeling exhausted and overwhelmed.

I am reaching out for guidance and support during this challenging time. Any resources, advice, or assistance you could provide would be invaluable to me as I navigate my daughter’s health issues and my own emotional struggles.

Broken washing machine and a car tyre puncture in the same week. Its the inability to weather these unexpected expenses that really highlight how precarious our situation is.

Some days being disabled, especially hidden disabilities, can be so difficult to navigate. To a little quaint nearby country village today for a treat bus day-trip. Been trying to find a disabled toilet but lots of old buildings so most of the toilets are either upstairs or downstairs. And the public disabled toilet was locked, second one today, even with my radar key the staff forgot to unlock those public toilets for some reason. And as it's a public toilet it's not like I can ask a staff member to open them, there aren't any around. Who even is responsible for opening those public toilets? Even when opening times for said toilets is posted on the doors and we're in the middle of the day like ffs. 😤 And why do the disabled ones get forgotten about so often. It's hard enough to find a disabled toilet as it is, and they're often further away and take longer to get to than the normal toilets. Heck half the disabled toilets aren't actually designed for actual disabilities, like you can tell disabled people weren't involved in those plans. When I did finally find a toilet the door was so heavy I thought I might break my wrist.

Anyway, walking out of the second cafe in this little town after finding they don't have an accessible toilet, they suggested trying a pub down the road cos it's new so should have disabled toilets (it did thankfully) but as I was leaving, one of the customers loudly says "being obese isn't a disability" and I did nothing My need for the loo outweighed my need for fairness, so tired of having to defend my accessibility needs to strangers, but it really hurt.

It's hard enough to manage weight when on low income cos we don't have the money and time for 1950/60s style homecooked meals everyday. Add to the that different meds I'm on to help my disabilities, that thousands of others in the same boat as me are also on, that makes you retain water, give you bloating and make you gain weight. The reason disabilities are often comorbid with obesity is cos managing disabilities is a herculean task and so is keeping weight off when you've a limited budget for healthy foods and limited health to prep n cook said foods while combined with meds that make loosing weight difficult. Which is also why obesity is higher on low income groups, cos food is a luxury these days, especially healthy food and the time it takes to cook them when we're all so stressed and burntout as is.

But it's all part of why the word feels like such a hostile place for people with disabilities, especially those with hidden disabilities. The public services that are supposedly there for us (like curbs, ramps, accessible toilets, etc) are often out of the way and require extra travel to find and access, if you can find them at all as many businesses don't bother, especially in older buildings where they can get away with not putting disability measures in place. Meaning also many shops and businesses aren't accessible to chunks of the community. Theres a DV support group I used to attend but it's steep stairs with no disabilities access and as my disability has gotten worse it's been impractical for me to go. So there's another service unavailable to a chunk of my community. And they wonder why we're so unhappy and depressed. It's a wonder to me suicide rates aren't higher than they currently are honestly.

I'm so worried about the gas and electricity bill going up.

Thoughts on Sir Keir Starmer's desire to see all folk with chronic illness & disability back at work. My tweet on 29/09/2024.

"Virtually no-one should claim benefits without taking active steps to get back to work."

After surgery for #SpinalCordInjury in 2012, I returned to work as part of the #ESA #WRAG group - 6 months after surgery even though it can take 2 years for an incomplete injury to heal. I did my best but mentally burned out in the meantime. I struggle enough to care for myself, my youngest son, my pets & maintain my home in a clean, tidy & sanitary condition as it is. If I had to work as well, it would be all consuming & I wouldn't manage. In the meantime, I am waiting for treatment based on an MRI taken back in May 2023 & symptoms are worse…

But hey - thanks goodness for all the drugs I have to take to keep pain at bay & thank goodness for free prescriptions. In the meantime I am having to cope with tendonitis in my hands & wrists. As a walking quadriplegic, which affects my hands in the first place it's never ending. @UKLabour

September is nearly over

Summer is gone

There was a rabble of summer last week and I got to dry my clothes outside and that was bliss

I’ve had no heating and I don’t have a tumble dryer so without the good weather it’s impossible to dry the clothes.

Bedsheets and towels are the worst without working radiators or a tumble dryer.

Education is not free - there’s no such thing.

So far and not in my budget since term started at the start of this month, my daughter has had 2 GCSE music trips. £30 here and £20 there. Today another cost £13 for a careers advice chat. I got one of those for free in my day. Money money money. I need to find that money tree and soon LOL

It’s almost month end and my finances are so stretched. I do not as yet have enough to cover my bills and the stress is getting to me. Am embarrassed that I am known as a person who asks to borrow money from family or friends.

Not looking forward to the gas and electricity bill shooting up from October onwards, the government should help us more instead leave people in debt. Elderly, single parents will notice a massive difference.

“Mommy, what do you want to be when you grow up “

I’m feeling quite insecure and sad for my child. She just started Primary 1 and she’s already starting to ask me lots of questions. Questions of why it’s just her and mommy and no daddy, what does my mommy do for work- all the questions she’s also getting on the playground.

And the school emailed to say they have 5 food bags that have been donated and to call ahead to reserve one as they were on a first come first served basis. Lord knows I need this bag but also comes dread of one more question about why i have shopping from the school. I tried to wait till most parents left but there were lots loitering about still and those children with late parents still waiting a bit on the inside , just by reception where I’m supposed to pick up this bag. But I do anyway and walking out of that door it felt like all eyes were on me. Then my daughter starts with the questions how come we have food from the school, why they gave it to us and not other mommies etc .I know I should be the last person to feel embarrassed but the reality is that people will still look and they will still ask. Couple days later my daughter is already asking me what i want to be when I grow up. Ok, so number one- I’m already grown up but the fact that I don’t seem to have a job means I’m yet to grow up enough to be able to get that job. Ahh the innocence of children. That broke my heart but I don’t know what to do to come out a better person. To be a “grown up” with a job that my daughter can proudly or even

Confidently say back “ my mommy is a ….

Find it hard to cope with a lot of my day to day life. I have had a neighbour make up lies to my housing, social services and the police. It’s seriously impacting on my mental health now and every area of my life.