PIP, anxiety and a microwave

I don’t think that anyone who lives in the UK hasn’t heard of Disability Living Allowancce (DLA) and about the way that the Department of Work and Pensions (DWP) is handling the converion of DLA to Personal Independent Payment (PIP) that is the benefit that is replacing it.

I’ve had a lifetime award of DLA because I’m not expected to get any better – there will be no improvement in my illness and so I was awarded the benefit without having to have an assessment either face to face or over the phone. Similarly with my recent conversion to Employment Support Allowance (ESA) it has been accepted that I’ll never work again and there was no assessment either face to face or on the telephone. I have to hasten to add that this is very unusual. Either the assessors in Bristol are extremely skilled and understanding or somebody up there likes me.

I got the letter this week that my DLA is changing to PIP and that the process has started.I didn’t expect to be as anxious as I became or that it would escalate the way that it did. The DLA is an important part of my income. It means that I can pay to have groceries deliverd or take taxis to places on the days that I can’t face buses or become too stressed to even get on one. My world has become smaller lately and it vital that I have DLA and its successor PIP in order to live in a wider world.

Getting to talk to my GP about a supporting letter was stressful to say the least. The receptionists at the practice I go to are like giant Rotweillers so fiercely do they protect the doctors from the general public. In the end I demanded that I speak to the doctor even though he was half way through his list. He apologised profusely for the lack of urgency that his staff had put on the messages to him and saw me within two hours.

We agreed a short term plan to reduce the ultra anxiety (sleeping pills and diazepam for a few days only) and extra rest. This will be easy to adhere to; I like sleep days.

One of the things that I’ve done to help myself cope with anxiety and mania is to buy a microwave oven. I last had one 20 years ago have used one since the late 80s when I worked in a pub kitchen in North Yorkshire (in those days they were at least £500 a pop).

It means that when I want to eat something I’ve frozen I can eat it that day instead of taking it out of the freezer and seeing if I still feel like eating it the next day. It almost means that I can make microwave chocolate cakes in a mug. I often want cake but just a slice, a large slice but still just a slice.

I think the lesson I’ve learned from the past few days is that bravado doesn’t stop anxiety and it doesn’t heal it or mask it. No matter how much of a wise person people think you are you’re allowed to be a real person and real people have crises and suffer illnesses. Wisdom doesn’t come from leading a life that you sail through it comes  through leading a hard life.

I’ve also learned that it’s okay to lean on friends. It’s not a weakness to love or be loved and it’s certainly not a weaknness to take comfort in that.

Grieving for the end of an era…

Anyone who has experienced the sudden loss of a person that they love will know how grief feels.

They will know the feeling of waking each day and being in whatever their range of normality is and then sudden remembrance that the person is gone.

That is how I’m waking each day and yet I haven’t lost anybody. My family and friends are all intact and in their rightful places – none of them have been lost to me.

It’s definitely a grieving because I’m doing that thing – a memory comes upon you and you smile just as the gut wrenching sorrow kicks you in the heart and it is your life that seems to have ended.

Except my smiles are not linked to memories and the gut wrenching kicks to my heart appear to be a spiteful and deadly illness attacking me once again.

I can’t eat much – I’m getting hungry but it’s hard to eat and the hunger fades as quickly as it arrives. I drink tea and coffee and have enough food to keep ticking over and my the figures on my scales are lower every time I stand on them. It’s not known as the heartbreak diet for nothing.

I’ve bought a gorgeous new knife and I’ve yet to use it because it would feel like a glorious celebration amidst a deep sorrow. I don’t want it to be the comedian at the funeral.

I am grieving yet no-one is lost to me.

Last month I spent time away then came back to three weeks of chaos while my kitchen was refurbished. My dog was incredibly stressed out and with a toe that seemed certain to be amputated.

I was becoming increasing unstable (damn you bipolar disorder, damn you) and had made the decision to take breaks away from my life but not to travel and have overnight stays for the next few years. It’s a big change but one I need to make. I’m looking forward to the first group of trips I’m doing in May and one of the days I’m visiting at least one place I’ve never visited before. Ogden will still get his boy time with Rob and that keeps him happy.

I am revoking the Lasting Power of Attorney which was put in place seven years ago when I was incapable of looking after myself. Today I’m still not that capable when it comes to coping but I manage my illness just enough to keep me floating.

I have stopped doing the voluntary work that I’ve been doing (writing about charities for a community website) which is both sad and a relief. Writing is hard work and writing about charities is draining.

The grief is about leaving a part of my life behind and starting a different part. I’m moving away from what was once positive and has become less so and adapting and shaping my life into what I need it to be in order to stay sort of well and not very ill.

I am, in a way, grieving for me. I am grieving for my life and have yet to be excited about the new one. I’m going to write in big letters on a whiteboard “YOU WILL BE ABLE TO TAKE MORE PHOTOS AND WRITE MORE DRIVEL.”

Onwards with trepidation, anxiety but hope.

Oh God, not another blog about Christmas!

This may be a bit of a ramble or it actually may make some sense but I want to talk about Christmas and I’ll be mentioning spending it on my own and about having a mental health problem but, chances are, yours will have nothing or something to do with either.

The problem with Christmas is bloody Charles Dickens and his unrealistic portrayal of a white Christmas and all jollity and forgiveness and happy families. Charles Dickens was wrong of course because we rarely have a white Christmas, it’s not all jollity, forgiveness may not even rear its awkward head and families often feel they have to be happy when they’re really showing their teeth in a rictus grin.

That’s a bit more than on the cynical side but it’s a lot closer to the truth than the experience of a lot of people. We all have that friend on Facebook who has the perfect family and they cook a perfect meal before they exchange perfect gifts and have a perfect evening before they go to their perfect beds and have a perfect sleep. I mute those people at least for the day (they usually have a perfect Boxing Day too) because I do not need their living up to hyperbole. I live in the real world all year round at that includes at Christmas.

I also mute those people who post status updates or tweet about how they imagine how people who spend Christmas alone feel. YOU DON’T KNOW HOW WE FEEL. Sorry for shouting there but it’s incredibly frustrating when people do the social media equivalent of the head tilt and feel sorry for me. I have, in the past, hated being on my own at this time of year but, as I’ve got older (and hopefully wiser) I’ve learned that for me it’s a positive thing.

There have been times that I’ve sat alone at home and cried my way through Christmas Day and Boxing Day and avoided seeing people so that they couldn’t asking me if I’d had a good Christmas. I thought that I wasn’t invited because I was awful but after a few conversations with “friends” it turns out that people can be insular, self-centred, feel a little awkward or just don’t have a clue about what friendship is. One particular male friend told me he couldn’t invite me to Christmas lunch because we weren’t having a sexual relationship. I still shake my head over that one.

I don’t cry over being on my own these days and it’s been a long time since I have. I have a long walk in streets that are almost deserted then come home to eat a meal of my choosing whether it’s a roast or a curry or baked beans on toast. I get to sit and watch my choice of television all day and I don’t have to consult with anybody else.

I put up Christmas decorations if I feel like it and if I don’t feel like it then I don’t. It’s my home and I do as I please. If I want to send Christmas cards then I do and I don’t particularly worry if I don’t get any back.

There is lots of advice for people with mental health issues on how to cope with Christmas (take a few minutes to yourself etc.) but they can apply to anybody whatever your circumstances. People with health problems aren’t necessarily destined to have bad experiences at Christmas. If you don’t presume you will be ill or stressed then you may well not be ill or stressed.

I tweet if I want to and post things on Facebook if I choose. I don’t join in hashtags on Twitter especially those aimed at people on their own or in poor circumstances. Nine times out of ten some noble figure with a horde of followers declares that they will join in and defeat the object of the exercise. If anybody is having a hard time they’re welcome to tweet me for a chat (@WeirdSid) but, be aware, I’m likely to be enjoying sat on my sofa in my underwear watching soaps on television.

I hope that you get the day you need (which isn’t necessarily the day that you want) and remember, if you want to vent do so and curse Dickens because he’s the bastard that started off the tradition of the unrealistic Christmas.

Why reporting disability hate crime doesn’t pay

I recently reported an incident of hate crime to the police. It was committed against me by someone who had been doing the same sort of thing over the years. Last year the local police, the housing officer and myself decided that I should report it through official channels so it could lay on file as an historical act and contribute to evidence when it happened again. I knew it would happen again, he’s not the kind of person to let go.

I made a statement and was told that the man in question would be interviewed under caution and it was intimated that it would be soon. Two weeks later I still hadn’t heard from the officer who was dealing with the case or even what his or her name was so I rang and asked for a phone call. I didn’t get a phone call.

Yesterday I rang and asked what was going on. The officer had picked up my message and ignored it. The woman at the control centre sighed throughout our conversation and she obviously thought it was unreasonable to expect a phone call in the evening – perhaps she thought people with mental health problems were incapable of answering the phone after a certain time of day. I asked to speak to the officer’s supervising officer. Unsurprisingly he was unavailable so I decided to raise a formal complaint and was told that I would receive a call from an Inspector within 48 hours. I still did not know if the officer who was dealing with the case was male or female and I’m not entirely sure if I was even told their name.

This phone call took 44 minutes including 36 minutes on hold. The Inspector rang me within half an hour because I was raising a complaint. A police officer has not been in touch with me over a crime that was committed three weeks ago but an Inspector can respond to criticism within an hour. Strange that.

The Inspector was offensive. He did not identify himself by either name or rank and had obviously barely scanned my statement as he asked me if there was CCTV on a street the incident didn’t happen on. On being questioned about whether or not Disability Hate Crime was considered to be a priority his answer indicated that it was, but only in theory and implied that mental health wasn’t considered a priority.

He went on to tell me that, even though he hasn’t a mental health problem and has not experienced disability hate crime (or any kind of hate crime) he understood my feelings on the subject perfectly. I challenged this statement by saying that unless he had been in the position I was in and had experienced the feelings then he couldn’t possibly understand how I felt. He claims seeing victims of hate crime gives him this understanding but fails to understand that he is seeing the impact of hate crime not experiencing it himself. He told me we’d have to agree to disagree which is a barely polite way of saying that he didn’t agree with my opinion and thought it without value.

Eventually he told me that the officer concerned should have rang me and done the interview with the man who abused me within days but they didn’t. Some officers are on top of things and others aren’t. Some will let victims know what is going on but others don’t. He thinks this is an adequate explanation and blames the way that the police work. Individual officers, it seems, have no responsibility for their work or the damage (and it has damaged me considerably) not doing it properly causes.

I wonder if he would use these same excuses and terms if I’d been a rape victim or was a member of the family of a murder victim. I think not.

I am going to make a formal complaint via the local PCC when I am a little more able. I’m enduring a crisis with my health that is taking months to get on top of and this series of incidents has made it worse. I could try going via another agency but accessibility is an issue. Accessibility to agencies that can help is not about wheelchairs or hearing loops or leaflets in a multitude of languages for people with mental health problems. Accessibility for me means being able to make a phone call and not stand or sit in a stressful environment for a long time just to see if I’m eligible for an appointment and then if I am I need to be able to speak with confidence to the person who is listening and that they will understand what I’m trying to say.

The Citizens Advice Bureau here fails on all these counts. My last experience with them was so stressful it contributed to my big breakdown which heralded the end of my working life and, as it was about debts and having an income statement to give to the people I owed money to, it was devastating that they missed off one essential outgoing and, for some bizarre reason, had all my bills & correspondence relating to my debts sent to their office. They did this during phone calls where I had given them permission to speak on my behalf and as these phone calls were made in a room away from me I had no input into them. They did not forward the mail on and I only discovered what had happened when the electricity rang me and asked why I hadn’t responded to a letter.

The local branch of Mind in this city have told me in the bluntest possible way that they don’t help people. What they are there to do is a mystery.

Have no doubt about it – these big charities work to a plan that doesn’t always include what is best for their clients. They seem to exist to fulfil their needs and not ours.

I am, in effect, stuck in a cycle of abuse that is being dealt to me by the very people who are supposed to help and can’t get help from outside agencies because, even though they mean well, they are inadequate.

I feel a failure as a person. I’m tough but I’m not unbreakable and currently I am broken. I didn’t become me with bells on as I envisaged when I was 14 years old instead I have become me with a bell, ringing it in advance to warn people that somebody with a severe mental health problem is approaching. That bell has been thrust upon me by authorities, bureaucrats and medics regardless of whether I want it or not. What they should be doing is ringing a full peal to celebrate the person that I am, not tolling a bell of doom warning people of the fears they think I embody.

Rats, ovens & kindness

It’s been a hell of a week.

My GP told me that I’ve coped well but I haven’t. I’ve coped but badly. My clothes haven’t been changed often enough. I haven’t had enough baths. I haven’t eaten properly. My washing up took me two hours to do this afternoon. I have coped badly.

It started last Saturday while, when giving my youngest rats a check, I found one of them had a fast growing lump. It appeared to be in a sac of its own which mean that malignant or benign the removal would be pretty straight forward.

I rang the vet on Monday and they asked to see her straight away. My vet, though quite local, is a two bus ride away. Walking it takes me 40 minutes up one of the steeper hills in Bristol and even in winter I sweat buckets as I do the walk. Anyway up we went and, as I suspected because the lump was fast growing, surgery was scheduled for the next day.

On Tuesday I was up and about at 6.00 so that I could make sure the rat didn’t have any water and to breakfast all the other animals before I could take her up the steep hill. I left about 8.00 and was back home by 9.45. I spent the day trying to keep occupied but worrying about her at the same time. Her sister looked lost in a big cage all by herself and it made me realise how tiny and vulnerable they are. I picked her up at 3.30 and we were home by 4.45. I was exhausted and tearful and nothing was done at home that evening. Food was a scratch meal of little or no nutritional value.

Somebody was supposed to be coming to fix my oven on Wednesday so again I was up and about by 6.00 but the engineer didn’t turn up. That was a whole day of phone calls from the manufacturer offering excuses and inadequate solutions until I finally got them to schedule the repair for Thursday. I also got it done without charge and with the minimum of fuss from an engineer who seemed not to fit in with the company because he was so pleasant and efficient.

So this morning (Friday) I got up early for my GP appointment and felt that I wasn’t going to get through the day. Though my GP is more than aware that my outward competence belies my inner inadequacy. As I said at the beginning, my GP feels I have coped well but I know otherwise.

This afternoon I put my phone on silent so that I could dodge a phone call that I didn’t want to handle. When the phone all buzzed on the table I did the thing I didn’t want to do and answered it. Problems with neighbours are hard to deal with and I find them very difficult. I stay quiet and calm until my back feels hard against the wall and then I let go. It’s a surprise to people but it’s the way I cope with confrontation and what is actually just a form of bullying.

The phone call was from a woman who wanted some details so that she could deal with the situation appropriately. I expected somebody business like and a little crisp at the edges and she wasn’t. She was warm, caring and kind. I cried and she became kinder. It was a difficult conversation but at the end of it I really felt as though I’d been treated with understanding.

The rest of the day has been a reaction to the stress of the week and I’ve even had a nap. The weekend will be a time of not quite getting things done but I have to begin recovering in my way and at my pace. It’s going to be straightforward but frustrating and there will be tears.

I hate my life some weeks.