2

Still waiting

Not much to report, things are the same.

I still don’t have my MRI results. It was almost 4 weeks ago now πŸ™„

When we phoned PIP on the 6th week (originally we were told we’d have an updated decision in 3), the person we spoke to said “what I’d advise you do is call again at the end of March if you haven’t heard anything”…😱😱😱 That would be twelve weeks!!!! 😑 So I think we’re going to phone them weekly just to try to annoy them into acting faster πŸ™„

And I haven’t heard about an appt for my EEG yet, despite the two referrals my neurologist sent πŸ™„

So.

I continue to have way too many seizures everyday, alongside battling chronic pain and bipolar disorder. I’ve been hiding inside, either not going out at all, or going out for 15-30 minute walks to enjoy the snowπŸ™‚

Because I haven’t really been going out, my seizures have been sitting at an average of 15 a day, but a few days back I had my lowest seizure day in about 10 months: 8 seizures in an entire day πŸ˜ƒ

And that’s pretty much where we’re at.

Advertisements
2

Broken

I had another broken day today πŸ™„

Yesterday we tried to have a nice day, it was an epic fail…I almost ended up in hospital due to having so many seizures, the day was awful & very much ruined. I was left asking myself why I even try to do anything/leave the house anymore πŸ™„

Being so physically unwell obviously takes a toll mentally, and after yesterday, today I’ve just been struggling hugely. I wanted to hurt myself, I felt suicidal, same old bipolar crap. Add to that a pet died unexpectedly and my bf’s parents are being absolute dicks…and yeah, it’s been a bad day.

I started to feel a little bit better this evening. I just get tired of all my disabilities have taken from me. I get tired of not being able to leave the house, or have a life, and yesterday showed that so clearly.

I posted this photo yesterday online. This was me after I’d attempted to leave the house; I’d had 29 seizures, felt dreadful, and a migraine had hit me as a result of the high number of seizures. I might have an invisible disability, but that doesn’t make it any less real…

I can’t remember if I posted about this already or not (I have no memory anymore, my brain can’t really produce new memories very well) but my bf called the hospital about my MRI results, and also asked about my EEG. He was told by the hospital that’s too far for us to travel that they have sent off two referrals to the local hospital for my EEG, because they want it done asap, but the local hospital just aren’t acting on it…how is that okay?!? 😩

I’ve had significantly less seizures today but my mood is in the pits…I’ll take that over the other way round, I guess!

0

Fall-outs, weird days, depression be gone

Sorry I haven’t been posting much, I’ve been going through such an intense depressive episode 😫

It’s been really tough, I’ve shed a lot of tears and have spent most my time feeling guilty & hopeless. Add to that family arguments/conflict on both sides, the stress of PIP assessments and other benefit crap, the daily struggle of various disabilities, and the fact I’m still grieving for our dog that was PTS before Christmas…and yeah, things have been awful.

But I hope I’m kinda climbing my way out of it.

It was supposed to be my MRI this weekend, but because of how fraught things were with my parents, we phoned up and delayed it so that it could take place at the hospital 15 minutes away instead of 90+ minutes away. My EEG & neurologist appts should also be there now, too, so that’s good πŸ™‚

In order to switch where the appts were, my partner had to ring the following:

Call the neuro switchboard. Be put through to my neuro’s secretary. Be referred to the neuro switchboard again. Be transferred to the secretary AGAIN πŸ˜‚ Be pushed back to the neuro switchboard for the 3rd & final time, then referred to the x-ray department HAHAHA πŸ˜ΆπŸ˜‚

The nurse we finally spoke to, in order to switch where the referral was, couldn’t believe we’d been sent to their hospital when our local is so much closer…we were like, “yeah, us neither!” πŸ˜…

I’m really, really glad that’s sorted though.

I’m knackered tonight. Seizure cluster this evening exhausted me, so I’m heading to bed now…hoping this post makes sense…?

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 πŸ˜‚

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? πŸ˜…

Exhausted. Yawn.

2

We kinda-not-really won!

If anybody remembers my disastrous negligent A&E visit (that was NOT my fault, I DID NOT want to go!!) , we got the result of the complaint that my mum was handling through a few days ago.

Now bearing in mind PALS isn’t there to help the patient at all but is there to cover the NHS’ arse, we got a good result πŸ™‚

I now have it on paper that medical professionals have confirmed I have seizures, that they witnessed them, AND that my seizures are nothing to do with my bipolar! Two of my biggest issues with their treatment was that a) they said I had no seizures since arriving at the hospital & no staff witnessed any seizures, and they said that was the reason they released me without treatment; and b) they told my mum that my ‘episodes’ (seizures) were most likely caused by my bipolar disorder.

So whilst they didn’t take any notice of our complaint, I at least have medical evidence of seizures now, and they changed what they were saying in my favour πŸ˜‚

I also got this in regards to the awful Dr that discharged me (the bit above point 11):

Kinda missing the point there – my issue wasnt AT ALL that he asked about PIP. It was that he then said in a derogatory fashion that I was ‘too young’ to be on PIP and should be ‘getting out in the world’. I made that extremely clear and you just decided not listen!

Everything to do with the NHS is gross….

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 Β 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,Β 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 outΒ wasΒ 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 Β£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 Β£900 which should be here Friday-Monday. We will be able to buy food πŸ™‚

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!