0

From 0 to 100

Gog here

Such small things trigger such severe mood episodes.

We’d been doing well for two, maybe even three weeks. Anon wasn’t stable, but she was doing great. Days were enjoyable and Anon was trying hard to avoid stress and cope with symptoms.

Then I tried to sort out some benefit information, and as ever they asked to speak to Anon on the phone.

Now even though I am her registered carer, and Anon’s illness means she can’t talk on the phone, AND I am on the records, they insist they go through security questions with Anon before they will talk to me about anything.

The security questions vary in length; the shortest is just getting Anon to give her name, date of birth, and agree that I can talk for her…if they make it longer for no apparent reason they try get her to talk to them about why I’m phoning, too.

Because Anon’s anxiety, paranoia and psychosis has gotten so bad this past year, I no longer try and pressure her to talk on the phone – it doesn’t help.

A few days ago I made the huge mistake of saying “they want to talk to you for security checks…?” and it completely broke her. She completely shut down and sat staring at nothing, crying. This is what no professional or assessor can ever understand; if Anon struggles with something (even if to them it is insignificant) it is enough to cause an episode.

This is why saying she “just” needs to do it doesn’t help, at all.

Since Tuesday her mood has been much worse. She’s still trying hard, but the stress certainly has triggered an episode.

Today we walked to a nearby supermarket to pick up a handful of items. I asked Anon how she was doing and she was low, anxious and very paranoid.

As soon as we entered the supermarket she began to panic; too much stimulation, too bright, too many people etc. Within two minutes of entering Anon had to leave. She sat outside whilst I grabbed a few things.

By the time we got home ten minutes later Anon was really, really struggling.

She took 5mg of Valium, and the great thing about this med is that it works insanely quickly – within 20 minutes she was far less anxious, and after an hour or so she fell asleep and had three hours rest.

When she woke up she was still struggling, bouncing from coping well to being surprisingly angry (Valium side-effect, we did notice it last time?) and feeling like she’s about to burst  into tears.

She’s just taken 2.5mg of Valium to see if it can soothe her and help her sleep, as we haven’t been to bed yet and it’s 5.30am.

If anybody is wondering, she was prescribed these Valium a while back, and told to take such a high dose by an idiotic Doctor that we have a lot left over. I have no problem with Anon taking meds we have in the house if she needs to, at a low dose especially.

It’s not like the NHS  are helping her.

We’ve been waiting 21 days now for the service to get back in touch after the emergency GP appointment

3

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 – one 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 – they 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 – it actually turns out she should have got this:

“Cannot engage with other people due to such engagement causing either –
(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.

2

It’s all broken

Gog started doing some benefit stuff today.

They wanted to talk to me on the phone, and it always makes me extremely anxious and scared, and they never understand and they’re rude and horrible…I ended up curled up crying with horrible paranoid gross thoughts.

Benefit stuff is going to be ongoing. Phone call in the next few days, forms, wanting to talk to me, face-to-face assessments..

I can’t do this, I really can’t.

We’ve jumped through all their hoops and done everything they’ve asked and they’re still fucking us about, and I can’t deal with the stress.

I’m so scared I’m going to have a full-on mood episode now and I can’t cope with that…manic, depressed, it doesn’t matter, I can’t hack it anymore.

I’ve been trying to reorient myself in various ways; seeing pets, doing productive things, reading and commenting on blogs, writing this…none of it is helping.

I’m going to go do some colouring and try wind down.

Having two dogs means there’s always the pressure of keeping them happy too…it’s hard to get the walks and training and play done when you’re breaking.

My partner’s toileting our oldest and giving him a frozen Kong to tire him a little, then he’s taking our puppy on a small walk and bringing him upstairs to see me…hopefully our pup can help calm me down, he’s often really good at that.

It’s all ruined, I was doing so well 😥

2

What am I?!

This past week I’m doing better than I have in a long, long time – last time I was this close to good was over 3 years ago.

(I can’t help but wonder if I’m doing better because we have given up trying to get help, so the constant stress of that is gone. We’re putting no pressure  on ourselves & are trying very hard to listen to what my body is saying)

I’m slightly hypomanic, but I am doing good. It is amazing, and 50% of the time I’m actually enjoying things 😀

A fairly other significant chunk is spent worrying and spotting things that *could* be symptoms of an incoming episode:

“Oh god I feel sad about a pet being really ill, am I going to fall into a terrible low?! Oh god I’m stressed as we have no money after the last manic, will it trigger an episode?! Shit I got hardly any sleep last night, am I manic??”

And then I’m also having a few shitty symptoms…I still have this spacey head.

It’s been going on about two or three weeks now, but we thought it was because I had been taking just one Codeine on an almost daily basis, to deal with physical pain – when I took three Codeine we thought the really bad spacey head I had that same day was a result of that.

I haven’t had Codeine in six days, and the spacey episodes continue…

Out the blue I get lagging vision, feel the entire world isn’t real, I feel pressure behind one eye sometimes, I can’t think / talk / focus on more than one thing at once…so if watching TV I can listen to what the characters are saying, but I can’t watch it at the same time, or process it. If I’m thinking inside my head I can’t concentrate on anything else.

These episodes last 1 – 4 hours, and they freak me the fuck out.

They’re different than anything I’ve experienced before, the closest I can remember is when I don’t believe the world is real, a psychotic symptom, or when I feel absolute terror and dissociate.

It’s been happening 1 – 3 times a day usually to the point where I can’t do anything for several hours…and it IS scary. (don’t think it happened badly yesterday though)

Because I also have a lot of health anxieties (anxiety never sounds strong enough, it’s terror) it has me so scared I have a brain tumour.

I keep thinking a lot about dying, getting sick, my partner and dogs being left alone, not having enough time with him or making the most of it…it’s extremely scary and I cry a few times a day through fear and sadness.

My partner is being awesome at being supportive and reassuring me, and we can go to the GP to check…but I’m scared about that for several reasons:

  1. As I said I’m doing well now, and as appts are terrifying for me one simple GP appt could easily trigger a bad episode
  2. We might have to get further help, further stressful investigations (blood tests, scans etc), and that would most certainly trigger an episode
  3. What if the GP didn’t take me seriously? What if they said it was just a symptom of my MH, and something is actually seriously physically wrong?

The last point really scares me, and it’s something a lot of people without mental illnesses don’t understand.

If you go to the Dr with physical symptoms and you also have a chronic / serious mental illness, it’s almost always blamed on your mental health.

Tight chest, headaches, neck pain, back pain, rapid heartbeat, constant hallucinations…these are all things that have been blamed on me being Bipolar, with no further testing.

I just want to be taken seriously. If a ‘normal’ person went in with these new symptoms (and they are new to me too) they would be taken seriously…whereas for me we’ll probably have to fight for that right.

0

Invasive questions

This is a bit of a random post, and not that serious.

I’m currently reading a book about a couple adopting a child from China, and the mother is describing the adoption process and rigorous questioning by their social worker.

The part that made me laugh were her examples of their invasive questions:

As someone who has mental health problems, I find this funny.

I see new professionals regularly, and upon first meeting me I get asked incredibly tough questions to answer- imagine having to open up to a complete stranger, especially when you’re unwell!

Are you having thoughts of killing yourself?

(If yes) Do you have a plan?

(If yes) What is it?

When was the last time you self-harmed?

(once, when I said I hadn’t for almost a year): Can I see your scars? (What, why?! No!)

(This was asked at a GP appt made because I was depressed) Are you sexually active? Are you using contraception? Why aren’t you on the contraceptive pill?

Have you thought about having children? Do you want children? (nothing to do with my mental health, I was talking about how I was scared of physical examinations and she just asked me that out the blue, not knowing it’s a sensitive topic for me)

(just after we’d moved house – maybe not invasive, just weird!) Have you made any new friends where you live now?

Do you take recreational drugs? When was the last time you took drugs? (they’ve had the same answer the past 7 years, why are they still asking me this??)

When did you last work?

Are you able to wash yourself? 

Have you put on any weight lately?

Tell me about your history with mental health.

Tell me about your life growing up

Of course some of these questions have to be asked, but some of them are inappropriate, and for others they need to make them easier to answer or explain.

Seeing several different people I’ve never met in a row (and believe me it easily happens; two GP’s, SPOA, one SW etc) and having to tell each of them my life story is stressful and exhausting.

On top of that a lot of social workers in particular ask these questions , blatantly bored, and give no thought to how they affect the patient…even something as easy as “have you gained weight” for me is an awful question. I hate the way I look and previously had an eating disorder, any admission about gaining weight makes me feel like a failure and dredges up ED thoughts.

And then every time they ask my partner if he wants me sectioned…that feels like a bit of an invasion on my rights and privacy 😀

 

0

Mood: ?

Bleh, back here again.

I have manic energy but don’t want to leave the house other than to walk the dogs nearby. I’m irritable, and often have a strong, lingering sadness inside me. Impulsivity is an issue (especially with money) and often the smallest thing going wrong makes me crash…sometimes just for a minute, sometimes for hours.

What mood is this? It isn’t mania or depression, what is it??

I can’t even judge it by my sleep; for a few nights I’ll sleep 6 hours total (a hypomanic amount for me) and then for several nights after that I’ll sleep 12 hours each night. What are you?!

I’m tired of this. I’m tired of being manic, I’m tired of being depressed, and I’m tired of this.

An hour ago I got cross with my partner because he wouldn’t let me apply for jobs. Then I spent a lot of money on a new mobile phone. Now I’m curled up in blankets feeling hopeless and thinking how useless I am at everything.

I’m at least grateful my psychosis hasn’t been so bad these past few days…I had a day where I rated psychosis just 4/10 on my mood chart!

I’m such a mix of sadness and energy…

8

Several weeks’ wait

Gog here, I haven’t blogged in a while, sorry.

I made an emergency GP appointment yesterday after speaking with Bipolar UK, and at the GP appointment I explained our history and that we wanted to be fast tracked straight to a psychiatrist. Anon was extremely fidgety with manic energy and nerves, but she managed to speak a few times and answer questions. Other than speaking fast she did great.

The GP was initially fantastic, and really couldn’t believe when I told her that after going to A&E the NHS set the police on us.

She asked us to wait outside, then phoned the place that’s been trying to get us to see just social workers. After about ten minutes she called us back in.

She had spoken with the social worker, the one that made Anon cry, the one Anon has a lot of fears and paranoia about. That wasn’t good, I wish the GP hadn’t told us that…

The GP said we had to wait to be allocated a social worker; even if we didn’t want to see them, we had to have one before we could be seen by a psychiatrist – wtf?

She said someone should be in touch in several weeks, to arrange an appointment – so essentially we’re back to waiting with absolutely zero support. She also ‘advised’ us not to go to A&E in the meantime as it’s not a nice atmosphere for Anon, but instead to call CRHT.

(I’d just told her last time I rang they wouldn’t come out. Even though Anon was psychotic, panicked and suicidal, Crisis Team only talked about ‘calm breathing’)

So…the appointment wasn’t a great success, but I thought it went okay. Anon on the other hand, it broke her.

She became extremely panicked and her paranoia / psychosis was out of control. She was sure that the social worker had ‘infected’ the GP and changed the way she thought. I couldn’t grasp whether Anon thought this was something she’d said (“Anon’s a non-compliant patient, we’ve tried to help her”  etc) or something more supernatural, but whatever.

Anon became very suicidal – I could totally see why, that tiny speck of hope we’d had after speaking with Bipolar UK had been shot down. A minimum of two weeks is a LONG time to wait when you’ve been waiting since November and are struggling so much as Anon.

Anon began begging me to let her kill herself – “think how much of an impact it would have! We’ve been trying to get help for so long, we just had another unhelpful appointment and then – BAM! I kill myself! Think how much of a positive change you could make if it happened, it’d be so worth it!”…yeah, it wouldn’t.

Bless Anon, she is trying so hard to find ways to cope at the moment, it’s so admirable. It’s incredible.

Can you imagine trying so hard to help yourself feel better, and seeing no improvement? Can you imagine trying so hard to help yourself, all on your own, with no support from the NHS?

Yesterday, whilst manic, suicidal and bubbling with rage, here are the following ways she tried to ‘bounce back’ and calm herself:

go for a walk, talking, photography, shouting, talking to friends, playing verbal games, going home and interacting with our pets…

I kept her safe.

It took about three hours for her to even out a little, and she did really damn well. Then she spoke with some family who weren’t very good (telling her she “just” needs to travel to the appointments) and she spiraled into rage and hopelessness again…

She’s trying so hard, we both are.

It’s especially difficult at the moment because Anon isn’t depressed. She explained to me yesterday she wasn’t sad at all, she was bubbling with energy in fact. She was absolutely fuming and very suicidal, but she wasn’t sad. Suicide seems like the only logical solution to Anon, it has done for weeks…she can’t live like this, they won’t help her. What else is she supposed to do?