2

A good day

I actually had a good day today, although I’m paying for meeting up with relatives for 4 hours – very exhausted and seizey now!

Once we got home my bf called the company conducting my assessment for PIP, and the woman on the phone was just lovely and so helpful.

Firstly we asked if there was a way to move my assessment from the city 50 minutes away (where they gave us the appt) to the city 15 minutes away. Being out the house for longer triggers an increase in seizures; being on transport for any amount of time triggers an increase in seizures…so I couldn’t do that.

Anyway, they moved my assessment across really easily…which begs the question of why they were sending us further away in the first place?!

Next we had to ask about allowances in the assessment room. This would either be a room with no windows and dimmed lighting or a room with covered windows and dimmed lighting – failing that, a desk I can sit under andhide hide from the light ūüėā

The woman put that on file and their appointments team should be calling us in the next few days to talk about what they can do.

Finally we needed to ask about recording the assessment. The fact I have seizures means my memory is hugely affected, and I can’t remember things like I used to. An assessment is stressful, and not remembering what was said would be terrifying for me…however PIP sent us a booklet of rules, and one was that if you want to record the assessment you have to let them know in advance and use a recording device that provides two hard copies (CD or cassette) BY THE END OF THE ASSESSMENT.

So. We don’t have anything that could do this, and we can’t afford to buy a recording device. The woman’s going to ask if we can use a phone to record, and if not then my bf will be writing everything said by hand…meaning the assessment will last twice as long, but what can we do? ūüėÖ

Exhausted. Yawn.

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0

We don’t have much money…

…and that’s okay!

Currently we can afford rent, bills and food. So we’re good! In the past we’ve had very very little money…I’m talking need to use a food bank, can’t afford ANYTHING little money. 

It was scary but it means we appreciate what we have, and money is never taken for granted. 

 I get so frustrated with people who are constantly bitching about being poor when they have so much, or who don’t deserve the money they have…life isn’t about money but I’m so damn sick of these idiots ūüėí

For example my parents can’t stand to hear us talk about money, and every time it’s brought up it’s like we’ve invited them to a challenge?! Like, it’ll come up naturally somehow – they’ll tell us ‘just buy it!’ about something vaguely expensive I want (eg ¬£20 dog harness, or a video game) and I’ll say “oh no, we can’t afford it atm”…and it’s like a little switch flips to CHALLENGE ACCEPTED!!

So even though they: own a gorgeous 3 bed house for the 2 of them, have 2 cars, 2 apartments, have been on 5 holidays THIS YEAR, have bought 2 new cars…they immediately go on the defensive to insist they are poorer than us ūüė©

And god help us if we say they’re not, because then we get lovely ableist arguments, such as – well we have to go to work (great, wish I could work!!).

It shouldn’t rattle me, but this literally happens EVERY time I speak to them and it’s so fucking annoying! We’re poor, we have very little income, we haven’t had a holiday in 5yrs and got excited recently because we bought a ¬£27 game, our second new game of 2017…we spend ¬£20 on each other for Christmas/birthday, and even though we rarely go out so spend money that way, due to seizures, we never feel bad about it! We never even bring money up!!

Or my bf’s brother. He’s in his early 20s, lives with his parents, pays no rent / bills, and has a full time job…yet he spends all his money on drugs and (to a lesser extent) alcohol, so his parents always lend him money!!! Like, WHAT?!?

Life is so fucking unfair ūüėÖ

Meanwhile we’re having to fight tooth and nail to get the benefits we’re entitled to, I’m having people left and right call me lazy/telling me to get a job when I’m having 20+ seizures a day and can’t leave the house…ugh. Spoonie life guys, sometimes it just really gets to you…

0

Today, we coped

We had a rough day today.

Seizure rage / shitty mood in the morning. Then on a dog walk our smallest pup was badly injured when another much larger dog ran into her. She hurt her front leg badly and it was very scary.

This was obviously incredibly stressful; she was in a lot of pain, she’s the sweetest little girl so it was awful to see, and thanks to benefits stopping for no reason and without telling us, we have no money.

Our benefit was suspended for a mistake that a GP wrote in a letter, we weren’t told they had been suspended and so had already missed a month’s money, and now they’re making us jump through a hundred hoops before they restart it. And, because that benefit was suspended, another has had to stop until the first has resumed.

We have literally no money.

As soon as we realised we had virtually no income we bought some dog food in so the pups would be okay, and have been on zero spends. Our amazing friend surprised us with half a dozen bags of food recently, it was amazing and we were so grateful, so we won’t have to use a food bank. But an emergency vet bill is not what we needed right now.

Thankfully my partner met up with his grandparents last week and we were given some belated Christmas money. We have ¬£200 thanks to my partner’s family, and can scrape together ¬£100 from our bank accounts if we abandon rent / emergency money.

We phoned the vet at the time of the accident and made an appt for this evening, but they only do ‘non-emergency’ (ie. if the dog’s not going to die) x-rays in the morning. So now we have the exam AND probable x-ray tomorrow morning.

In the meantime our little pup has been having a ton of cuddles. She has done SO WELL. She bounced back super quick, she hasn’t seemed in pain after the first hour (although can’t bear any weight on the leg), and it’s her wrist / around the dew claw that’s injured and not her leg, thank god.

With all this massive amount of stress, I’ve amazingly not been lost to a day of seizures or fallen on a suicide attempt or being overwhelmed with panic. I’m wondering if this is the CBD oil helping my MH symptoms?

I’ve been scared and anxious and sad, yes, but I think given the circumstances that is totally normal.

I’m actually proud of myself. Which feels weird haha. Usually a routine vet appt freaks me out so…yeah, I’m proud. And so relieved that my little one is doing as well as can be expected.

Now just please let the appt go okay, because I love my baby so much…

0

Knocked down

Gog here.

I have a very important post to write at some point, but I don’t have the energy yet – even thinking about what I want to write about makes me incredibly angry and sad.

I plan it to be a long, detailed post on the way we, and especially Anon, have been treated during applying and appealing for PIP, Personal Independence Payment.

I’ve already talked quite a bit about the issues with PIP, and also that they have awarded Anon 11 points both times (12 and over means you get higher payment) – we have been told she should be awarded at least 26 points, so it’s extremely frustrating!

We received some absolutely ridiculous news in several ¬†letters, and when I phoned up to complain I was told they have no complaints procedure, and as on their end they had ‘followed the book’ there was literally no way to complain.

I want to complain because Anon is being discriminated against.

They are refusing to award points that she should easily get, and because it’s a mental disability and not a physical one, they are treating it completely differently.

I want to complain because I am tired, so tired, of people – government agencies, medical professionals – telling me that Anon doesn’t require the help or assistance that she so desperately needs, because she has an invisible illness.

It’s all well and good telling me that you’re not going to see Anon because she has a mental illness and you seem to think mental illnesses are bogus…okay, fine, I’ll be her 24/7 carer and it’s exhausting and difficult, but I’ll do it because I love her…but when you then refuse to give out the correct amount of money,¬†what do you want us to do??

I can’t work because I must care for my partner, but we’re struggling to live because we don’t get the money we’re entitled to

I plan on contacting charities and legal aid, not that there’s much we can do as if we took PIP to a tribunal we could lost ALL our benefits.

But I’m contacting charities and legal aids because I want to complain, I want to complain about the system, and I also want to contact some newspapers and see if they will talk to me. Difficult with Anon’s paranoia, but I’m so tired of this uphill battle and feeling completely ignored and alone.

0

Money struggles

Gog here. If you’ve been reading Anon’s posts you will know we have been struggling a lot at the moment, with various things.

Anon’s mood has been absolutely crippling – not just depression, oh no that would be far too easy wouldn’t it, but suicidal depression alongside hateful thoughts towards herself the like of which I’ve never seen, and anxiety that means she can’t breathe when it hits her hard.

That’s been fun.

Alongside all that the rescue puppy we recently brought home has seriously injured her leg, meaning she’s been prescribed 6 weeks crate rest. Because of the lack of exercise she is being an absolute brat (hard things to deal with like barking, whining, an increase in biting which we’d almost gotten rid of etc) and she’s recently decided she doesn’t like her crate, and so whenever we shut the door she is barking and screaming constantly.

This is after we’ve put weeks into crate training and she has always loved her crate, so it’s very hard for us to deal with. I know it doesn’t sound much, but imagine being with a puppy you can’t leave because it panics her, and who barks and tries to run and bite you 24/7 because she has no release for her energy! It’s draining.

Finally we’ve had some serious money issues.

We’ve been struggling with money since the start of this year, after a manic episode brought us down to so little money we had to use a food bank…slowly our money was increasing, even after we unexpectedly brought a puppy home and she had injuries and vaccinations to deal with.

For the past 1.5 months we have had next to no money, and we haven’t known why. It has been incredibly hard to deal with as we had scary vet bills for our dog’s leg, rent bounced last month but we managed to pay it quickly, and we couldn’t afford food yesterday.

I’ve been wanting to get in touch with Anon’s bank to see if we are victims of fraud (this happened with my account a few years ago) but we either have to travel to a branch, which Anon can’t manage due to crowds, public transport, and she’d have to answer security questions – or she has to speak on the phone, something she also can’t do.

Anyway yesterday I phoned the bank and explained everything, and the person we spoke with was actually really helpful. She said she had one question to ask Anon, and it could be done on speaker-phone, so we managed that.

She then went through every transaction from May until now, and I said I was really confused because we didn’t have the money we should, but all the money out¬†was¬†us. Then she realised we hadn’t been getting a regular income payment, it hadn’t come in for the last 6 weeks.

It turns out Employment and Support Allowance had stopped paying us, for absolutely no reason, so for the last 6 weeks we had been living on ¬£220 a month – no wonder we had been struggling with money. I’d really have appreciated it if they had contacted us to let us know they weren’t paying us!

I phoned them up, and the gentleman I spoke to on the phone was absolutely amazing – I wish I had got his name to tell someone he was so kind to us. He said the problem was on their end, and he was so sorry we had had to go through this.

He had to speak to Anon twice, but only in that he had to read things to her and she had to say she agreed – before each time he asked her if she was okay.

Anyway, they are back-paying us ¬£900 which should be here Friday-Monday. We will be able to buy food ūüôā

Then today I had to phone up Personal Independence Payment, as we got a stupid letter through the post saying that we must send them evidence about how ill Anon is. Which is ridiculous, as we don’t have anyone who would send evidence, because we have been waiting these past seven months for Anon to see a psychiatrist!!

You can see my issues with PIP here.

I phoned the PIP number, and the person I spoke with was initially very rude and unhelpful – refusing to speak to me and demanding to speak to Anon. Wow yeah, if you think you can talk to her when she is psychotic, suicidal and suffering from a panic attack, go ahead you moron…

Of course I didn’t say that and I’d never put Anon in that position. I patiently explained again and again she couldn’t talk on the phone, I was her registered carer etc.

Finally she was willing to speak with me. I explained there wasn’t any evidence we could send, but if they could access medical records they could see our recent dealings with the NHS – countless appointments with people who prescribed emergency medication and contacted Crisis Team, and obviously our recent trip to A&E because Anon was suicidal, and how the police were called afterwards. I said that should be evidence enough to support everything we had put on the form.

That was pretty much it. I just know they won’t count that as evidence, because it’s not the same as being able to write and talk with a person who has seen Anon several times…but it’s all I can give them, and if anything it should show how bad things are better than talking to a Doctor.

I’m scared that either they are going to give us the same rate again, or more so that they will want to do a face-to-face meeting with Anon (the last one they did, years ago, was terrible.)

How can I explain to them that we can’t even do bloody medical appointments with Anon because she has the most terrifying panic attacks whenever I so much as mention them, so a PIP appointment is a definite no no? They won’t understand that, they won’t even try…

And that’s the end of my money whinging. I sure hope things pick up soon!

0

Listen: it’s mania

Gog here.

It can be so hard to get the person with Bipolar disorder to understand that they’re manic.

I’ve found that with Anon, if I point out why I think she’s sliding into a depressive episode, she can recognise the symptoms pretty easily and admit she’s falling.

When she’s in a really intense manic episode, the worst of the worst, I can get her to recognise symptoms even if I can’t get her to understand she’s extremely ill…it’s kinda hard to ignore the fact that you’re sleeping less than two hours a night, I guess.

Hypomania or lower on the mania front is harder for me to explain to her.

When she’s hypomanic it honestly is easy to mistake her for just being a happy / energetic person. It really is. It’s only the persistence of the mood and when I’m falling asleep trying to keep up with her that I know for sure.

Milder mania, I can tell she is unwell, but she really can’t.

Her sleep is reduced but not drastically (down from 10 hours a night to 7), she is on the go all day, she is impulsive, extremely irritable, she wants me to be on fast speed like she is, and she will spend more money – but usually on things that she does want, or is interested in. It’s not like when she’s sky high and will buy absolutely anything.

At the moment Anon is on the upper end of hypomania.

Reduced sleep, terribly energetic, spending, active, irritable, productive, creative…tiring!!

The other tricky thing is that going out too many days in a row often triggers a manic episode in Anon, or worsens one she’s already in. I don’t mean going out and partying all night, I mean literally any time she leaves the house it pushes her towards mania…shopping, doctors appointments, visiting family, anything.

When she’s manic I try to limit her to two dog walks a day, and nothing else. We’ll go out and do things twice a week, but I try and encourage her to stay as calm and chilled as possible.

Of course this is really difficult when a person is manic, because all they want to do is go out. All. the. time!

I am a carer; it is my job to care for Anon.

A lot of people do not understand this, my dad asked just the other day “you not thinking about getting a job, then?” They don’t understand: I¬†have a job. My job is to keep Anon safe, happy, and as mentally well as possible.

It’s a full-time job and I throw my all into it; I love Anon, she loves me, and to say how ill she is we¬†do well. Even hypomanic, which is her least severe mood episode, I have to be there.

I have to persuade Anon to stay in, and keep her entertained without letting her be too active / stimulating. I have to watch her, prevent her from buying things online, remind her to eat, try help her sleep, try prevent the mania from climbing.

All the while I have to try keep up with her and match my sleep to hers’.

I love her so much. Bipolar is such a fucking ball-ache.

 

5

The problems with PIP

Gog here.

For anyone who doesn’t know, Disability Living Allowance (DLA) is being replaced with Personal Independence Payment (PIP).

Also if you didn’t know, it has been made much harder to qualify for anybody who is disabled, but the new forms and point system make it significantly¬†harder for people with mental illnesses to qualify.

Anon received the same amount of DLA for about six years: Highest Care rate, and Lower mobility rate.

When she was switched to PIP¬†the form to fill in was novel-like in its’ thickness.

A lot of the questions are biased to people with physical ailments – it isn’t so much about if you’re a danger to yourself or need supervising, it’s more focused on can you *physically* manage to communicate, feed yourself, eat, wash, dress etc.

We filled the form out and sent it off, then waited. And waited. And waited.

At some point we had a face-to-face assessment, and as Anon was manic at the time I tried to do a lot of the talking, but the assessor wouldn’t write down anything I said and kept saying “[Anon] can tell me herself”. It was ridiculous because Anon was saying how great she was, when she was actually very ill, but they wouldn’t listen to me.

This is a huge issue, and assessors ARE supposed to listen to carers / family.

Close to a year later we were told Anon would be getting the standard (lower) PIP rate. She had scored 11 points; 12 points gets the higher rate.

Considering they hadn’t given her several points they certainly should have, I started an appeal, & visited with a local charity who sent the appeal off. We then received a letter from PIP that we needed to sign so the charity could speak on our behalf, so we signed that and sent it off.

18 months later we received a letter with the same thousand page form to fill in. Sigh…

There was no explanation as to why we had to fill it in again, so I obviously assumed they had finally gotten around to our appeal. I helped Anon fill it out and, as she had started having psychotic symptoms 24/7 since the last one, her symptoms were different and her illness worse.

Several weeks later we were given yet another face-to-face assessment.

This was disastrous as Anon is too ill to do anything like that – if she can’t manage medical appointments, how would she manage an assessment where they are automatically against her?! She can’t even talk to strangers on the street for Pete’s sake!!!

Anyway, we ended up missing and having to belatedly cancel the appointment because it was just a few days after we went to A&E, and I was told it would be no trouble & PIP would be in touch to arrange another.

Yesterday we got a letter through the post, it was PIP saying they had looked at our details and awarded Anon 11 points, the same as before Рone point off getting the higher rate.

This is despite the fact Anon is most certainly entitled to the higher rate, and despite the fact that her symptoms have changed drastically and worsened since the last time we filled out the form.

Also, and this is absolutely disgusting, they awarded Anon 0 points for¬†communication, saying she *can* communicate with others¬†– she can’t talk to strangers, often can’t manage to interact normally with her friends or family, and sometimes people can’t understand her.¬†PIP had written out this exact quote:

“You are able to communicate,¬†just speak faster than normal”

First of all that is so belittling to somebody with Bipolar disorder, and shows absolutely no understanding of a manic episode.

Secondly we wrote three paragraphs for that section and just one sentence referred to the fact that Anon spoke fast when manic!!!

I phoned PIP immediately and tried to start an appeal, but wasn’t sure I could after already appealing once.

Guess what? The first appeal never went through, they had all the information but they just never did it. According to them we had never made an appeal. Disgusting!

I was told someone would phone me back, and in the meantime spoke with a charity and was directed to an amazing webpage that gives out fantastic information about PIP and the points system.

From this we discovered that where they had granted Anon just 11 points total, she should actually have scored at least 26 points. How disgusting is that?

For the mobility part they had given her 4 points, when I was told she should actually get 12:¬†¬†“Cannot follow the route of a familiar journey without another person, an assistance dog or an orientation aid” – this would mean she would be entitled to the higher (enhanced)¬†mobility rate.

The fact that both times we filled in this form they gave Anon 11 points (when her symptoms changed between each form) shows how they will sneak you out of the higher rate.

Also terrible is that at no point do they tell you how many points you could get for each section Рthey say you got 2 points, but not 2 out of 12 for example.

For engaging with other people Anon was awarded 2 points, which we thought was the highest she could have been given Рit actually turns out she should have got this:

“Cannot engage with other people due to such engagement causing either ‚Äď
(i) overwhelming psychological distress to the claimant; or
(ii) the claimant to exhibit behaviour which would result in a substantial risk of harm to the claimant or another person. 8 points.”

This is why I urge people again to look at this site – these are the exact quotes and tally system that they use, so if you can say to them for example “I need¬†communication support to be able to understand basic verbal information” you can not make it anymore obvious for them how many points you are entitled to.

If Anon was living on her own I have no doubt she would not be receiving PIP

She would not have managed to fill in the form, she certainly wouldn’t have been able to attend the assessment, and she wouldn’t have been able to phone them or start an appeal.

They make it so hard for people with serious mental health problems to a. get the amount they deserve, and b. be able to fight for those points.

Remember when I said she scored 0 for communication? Here is what she should actually have got: “Needs communication support to be able to express or understand basic verbal information – 8 points

Finally for the mobility section she was given 4 points, which was “Needs prompting to be able to undertake any journey to avoid overwhelming psychological distress to the claimant.”

Actually she should get, at the very least, ” Cannot follow the route of an unfamiliar journey without another person, assistance dog or orientation aid.10 points” – this would mean she should get the lower mobility rate, at least.

I am writing this to show that people with serious mental illnesses are being cheated out of the help they deserve.

We struggle for money. We have had to use a food bank. Our lives are incredibly, incredibly difficult.

We are not lazy. We are not ‘benefit scum’.

My partner is drastically ill and our lives are a struggle. Anon struggles with the most basic things, and because she can’t speak to people / on the phone, it is hard for me to sort out a lot of things because (even though I’m her registered full-time carer) they will not talk to me. What do they want me to do??

We should be offered help and understanding, yet here I am having to fight tooth and nail for money from the government and for help from the NHS.

Contrary to how the media reports it, we don’t get much money.

We can generally manage very well with money, but Anon’s manic episodes often cause huge issues. Right now for example (with Anon’s last manic a month or so back) we have around ¬£600 to our name; rent is ¬£450 a month.

I try my hardest to manage manias and money; even though it’s hard we’ve never missed¬†paying rent, bills, & have never had debt.

This idea that people on benefits are lazy and are rolling in cash needs to stop, it’s so damaging to those that are struggling.

When Anon was first struggling with depression, mania & psychosis, I got a job so we wouldn’t have to rely on benefits.¬†We both wanted to work.

But when me working put her life at risk, I had to quit after 6 weeks, and I have been her full-time carer ever since. We even tried to run our own business, but again the stress was  too much for Anon and the resulting mood episodes put her in danger.

After that we volunteered at least weekly, but again had to stop as her illness deteriorated.

It is not easy, and we are doing our best.