Love Labour’s Lost

When it came to voting in an election for the very first time, I knew, without a shadow of a doubt, I would vote for Labour. Working class born and bred, nerdy Politics student who knew a Green vote would be wasted in our First Past the Post system, couldn’t bear the Tories, and saw the Lib Dems as an ‘also ran’. Yep, my X was definitely going in Labour’s box.

Much to my joy, Labour won the first election I voted in. I didn’t agree with all of their policies, or even like Blair all that much, but they represented my ideals and my background far more than any of the other parties. So I was happy; my little wonky X had helped them to victory.

Fast forward to last year’s election. I’d spent all day at the hospital, but it was a close run campaign, and I was determined to vote. Dad had to wheel my chair right up to the booth, but I hauled myself up, read the papers repeatedly for the sake of my easily confused tired out brain, and then made another wonky X for Labour.

When the Tories made a coalition with the Lib Dems, I was achingly disappointed; the idea of spending at least four years under their supposedly joint government was almost painful. I knew all too well how the Conservatives treated the working class and those in need like me, and it was plain to see, right from the start, that Nick Clegg and co. just filled the benches. They soon came to be known as the ConDems, and along with my ill and disabled friends, I quickly realised just how apt that moniker was.

It wasn’t long before the ConDems started targeting the sections of society that they perceived to be the easiest: people with disabilities and illnesses, their carers, the elderly, and those who are vulnerable. Cuts in services provided by councils were happening at an alarming rate, the cost of services for those who need them rose dramatically, carers were being put under even greater strain. And then the vicious, painful rhetoric started.

Disabled and ill people have long been treated with contempt and even cruelty, particularly those with invisible illnesses or mental disabilities, but now the government seemed to be encouraging it, fanning the fire of distrust with words, and turning it into hatred.

Making those of us with disabilities and illnesses synonymous with ‘scroungers’, ‘benefit cheats’, the work shy and irresponsible lay-about, draining society with our greed and idleness actively increased disablist content in the media and actions in society: people have been verbally abused, vile notes have been left on cars where Blue Badges are displayed, carers have been spat at, and even worse.

As this situation worsened, Labour supporters like myself were certain Ed Miliband would speak out, defend us, and make clear the distinction between those of us who cannot work – however desperately we want to – and those who won’t work and have no desire to. We hoped that he would support us, and tell the world how we loathe those people who are making careers by faking the pain, trauma and misery we often live with, through no choice of our own.

But Mr Miliband stayed silent, ignoring our plight, and eschewing any hint of Socialism Labour had left – society sharing what it has to ensure everyone is supported.
Then the unthinkable happened; Ed Miliband began to use the same kind of language as the opposition. Truly, I could’ve cried. I, and many others, had been waiting for Labour to oppose what their opponents were saying: to show the discrepancy between the percentage of benefit fraud rates and the percentage of the government cuts; to state that the ATOS tests are ridiculous and give false results, as a man declared “fit for work” died just two weeks later, of the illness he was deemed to be exaggerating; to support carers and explain the millions they are saving the country by not leaving their loved ones to be looked after in care homes or hospitals; to tell the country that we are not scroungers, and that every single healthy person is just an illness or injury away from being in our position.

When Ed Miliband announced Q&A sessions on Twitter, many of us hoped they would be the way to engage him, to garner his support, or just get a 140 character statement that we’re being treated unjustly. Disability campaigners, individuals and on behalf of groups, sent tweet after tweet, hoping one would be seen, as did our Twitter friends with physical or mental health problems. Amongst untold tweets from our “community”, only one garnered a response, which could have come from any ConDem – all tiers of society have to be responsible, from the bottom to the top. The implication that we are at the bottom cut like a surgical scalpel.

Throughout each Q&A, we waited for more responses, thinking that surely we would be acknowledged? But no, favourite muffin flavours and other trivial nonsense was more important than Labour supporters who were desperate for his help.

When I think of the next election, I feel completely lost. The ConDems are marching ever closer to being my worst political nightmare come true, but for the first time ever, I truly do not know if I can bring myself to vote Labour. The party I’ve always supported has no support for me, or my friends. Ed Miliband spends his time parroting whatever David Cameron has said the day before, leaving voters like me to be spat at, to be deprived of our basic daily needs of food, cleanliness, human contact, and to be so fearful for our futures that some become suicidal, or actually take their lives.

I’ve always been adamant that those who have the vote should use it. Especially women, for whom the Suffragettes fought so hard for, and when women around the world are still be kept away from the voting booth, like an underclass.

Now we, who have disabilities and illnesses, are becoming an underclass, and so our ability to vote is a treasure.

But who on earth do we vote for? Labour, Conservatives and Lib Dems have all merged together, creating a three-party system that strikes fear into anyone who cannot care for themselves or needs support. A vote for any other party is a wasted one. So do I not vote at all?

When I stand, wobbling, in the booth at the next election, I have no idea where my wonky X will go. Or if it will go anywhere at all.

Thanks to you, Mr Miliband, I’m another love Labour’s lost.

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On board the Crazy Train

Before I write update you all, I want and need to say a huge, heartfelt thank you to every one of you who has given me support, shown love, shared kind words, sent me marvellous messages, and helped to keep me going. It has meant a great deal to me, and has helped me to raise a smile on the darkest of days. I’m lucky that anyone gives their time to my ramblings, but that you do, that’s more luck than I deserve.

Enough soppiness? Okay, I’ll fill you all in.

On Tuesday morning I felt very anxious; I wanted to go back to the GP because I wanted more help, but I was terrified I would be disbelieved or, at the other end of the spectrum, be told I would have to be admitted to a psychiatric unit.

When I was called by the doctor, I asked Mum to come in with me, and she followed on behind me, stopping only to hand my repeat prescription. As the door between waiting room and doctors’ rooms slipped shut, and my GP lead me on, the idea of being taken away to a secure unit flashed in my head, making my stomach lurch. Mere moments later, Mum was beside me, and I reminded myself not to overreact – that scenario was wildly unlikely!

Super Mum was silent, but prepared with tissue in hand for almost certain boo-hooing. The GP asked why I was there, and I told her all that had happened recently. I said that the fluoxetine had helped me, but for the past few months, I felt that I had been slipping backwards – crying, mood swings, manic phases. I said that I no longer needed an upper, I needed something to make me stable, and that through research and the testimony of a very reliable friend, I had come to believe Lithium was the best of the mood stabilising drugs.

I had been teary, and needed to take deep breaths, but the deluge of tears Mum and I had both expected stayed away.

GP said what I had been expecting – my psychological needs were now outside of her range of experience and real understanding. I silently steeled myself for “admission to a psychiatric unit”, but, like the tears, it didn’t come. Phew!

She said she would refer me to the Community Mental Health Clinic, which isn’t far away at all. Doctor looked at doubling my dose of Fluoxetine while I waited for my appointment, but decided not to as Floxy + Gabapentin can = seizures. And I could do without that right now.

Doctor said she will tell them that my case is somewhat unusual with EB etc. I think she thinks EB is the main cause of my Bipolar, and I really don’t think it is. But maybe I’ll make discoveries with the psychiatrist at the clinic (who will, I believe, prescribe the best meds for me after a meeting or two). It will also very likely speed up my referral (GP said about two weeks, when I’m told eight is the average for “urgent” cases). Maybe people will think I’m abusing EB to jump the queue, but I don’t really care. Like EB, my BD affects my parents massively, especially my mum, whom I adore.

The sooner I’m not making her cry, or taking up hours of her time as she tries to talk her sobbing wreck of a daughter round, or trying to keep up with my manic projects so that I don’t hurt myself, the better our whole families lives will be.

I’m past being shy of having Bipolar, I’m past being shy that I need medication to get my life back. Because I’m not shy to say I can’t help having BP anymore than I can help having EB, and I Camt so anything about one, I can actively fight the other.

I’m not just fighting for me, I’m fighting for my family and my friends, who have supported and loved me all the way. I’m pulling my gloves on and walking into the ring…

Round One is about to start….

Mel xxx

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Ms Jekyll-Hyde, at your service

Tonight (technically it was yesterday, but I haven’t been to bed yet. That’s my rule) two of my best friends came to spend the evening with me. We made the most of me having the house to myself (my parents and sister were out at a wedding reception, which I didn’t feel up to attending) and had a girly evening. They also, without being asked, helped me do the things my mum would help me with (acting as my hands, getting me things I wanted to save my ever painful feet). True, wonderful friends.

We had a good old chat, catching up with each other’s news: laughing, worrying, teasing, comforting, reassuring, innocent gossiping and being scandalised. For any male readers, they are the markers of a proper night of Girls’ Talk. They then helped me clear out my wardrobe – helping me decide what to send to the charity shop, taking some bits for themselves (which they’ll purchase by donating a few pounds to DEBRA), and clambering in to the wardrobe to pull items out, saving my hands and feet, and saving my full-time carer mum a job, as someone had to help me!

During our chat, the girls asked me a very pertinent question: “we know your skin is in a state, but how are you mentally and emotionally?”

Pertinent because, about an hour before they arrived, my mum suggested that we make an appointment as soon as we can, so that I can ask my GP for better treatment for my Bipolar Disorder.

Before I was started on Fluoxetine (Prozac), the idea of suicide was a permanent resident in my mind. Starting on the medication eventually shooed it away, and I felt more stable. My mood swings became far less frequent, and I developed the ability to know when a manic or depressive phase was starting. I’d tell my parents, and I would either do things to make use of my manic time – I get a lot of boring admin done during those times, as the Fluoxetine make them manageable. If it was a depressive time, I was able to talk more openly to my parents, who had endured me sobbing but still insisting “I’m fine, it’s nothing, honest, I’m just being stupid”. Now I could tell them “I can feel it coming on. I need a cuddle and to talk/I’m going up to my room, I need to be alone”. But if I wanted to talk, I would be honest; after my fundraising event, the euphoria of it being a success was huge…then the depression hit. I could tell my mum and dad that it was the come down – what did I have in my life now? What could I do next? It had proved I was too ill to work, which ruined my dreams.

I am incredibly lucky to be twenty-five and still have such dedicated, loving parents. As the Black Dog put its paws around me and growled despair into my ears, my parents would wrap their arms around me, letting me drench them with tears and snot as they pull me into cuddles designed to squeeze the hurt out of my soul.

Unfortunately, as my regular readers know, Fluoxetine hasn’t been working so well recently, with my suicidal tendencies making a reappearance. As my body let me down and drained every bit of energy and fight I had, the Black Dog broke out of its cage, and has been holding me by the jugular ever since.

Some days it lets me make a good show of being truly happy, but it’s always there, hackles up, telling me that I’m worthless, a drain on my parents, a failure, repellent, an oxygen thief, generally wholly unworthy of living.

The days of pretending are getting few and further between. Most days see me burst into tears, or wracking sobs that make my chest ache. Yesterday (Friday) was a emotionally painful day, made worse by the fact that I couldn’t vent my fury without sobbing. In a bizarre way, the tears seemed to help my case and amplify my rage, but I was angry to have uncontrollably cried in front of a crowd of people. I felt so stupid, so childish and embarrassed.

Today, a relative made thoughtless, unfair and hurtful comment. I was barely able to respond, knowing what would happen if I dared to speak too much. Of course, the tears came anyway, and what I would usually have a good old swear about, because it pissed me off, became a knife to my heart. I cried to my mum about it again just now – a good eight hours later.

I don’t want to live like this. I can’t kill myself without help, which no one will give me. I need to live my life, in which I’m me. I need to be a good daughter, not one who makes her parents feel guilty for conceiving her.

So, off to the GP we will go (my mum will come in with me only if I want her to. I’m certain I will). I will ask for something better – hopefully Lithium, which has it downsides but is apparently the first class Bipolar Treatment.

The Black Dog will be rehabilitated, retrained, rehomed.

And I can be me again. Flawed, imperfect, but not as much as I am now.

Wish me luck xxx

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Coming Up on Blogeration…

After weeks of feeling like total rubbish, wrestling with Bipolar, spending time in hospital and having unexpected procedures, my blog became somewhat neglected. Apart from a couple of rather whingey posts. I did intend to write a post about all that happened whilst I was in hospital, to update all of my lovely friends and Tweeters (many of whom have become good friends), but I decided we’d all had enough of my infirmary saga. If anyone wants an update, or to ask a question, please just say. Your support, friendship, love, laughter and visiting – Mrs Marsh, you star!) – made everything bearable.

Instead, I, and my opiate muddled brain, will attempt to write about the subjects that have been bugging my whilst I’ve been bug (of the infection kind, not of the many legged variety) and bed ridden.

They include:
The abortion bill debate
The treatment of and attitudes towards foreign workers
ATOS (inc. their sponsoring of the Paralympics)
The continuing disgusting treatment of the ill and disabled
Sexuality and censorship

How quickly these get written will remain to be seen! But work on the first will start as soon as this one is posted.

TTFN

Mel x

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(What’s the story?) Morning Gory

Last night I was in agony with my foot, to the extent that I genuinely didn’t know what to do with myself. It was happening within a depressive phase of my life with Bipolar, which made it all the worse. You can catch up with it by reading my last post.

Well, I took extra sleeping meds (within the dosage I’m allowed), to enable me to sleep through the pain. So tired I couldn’t sit up straight, me and the Black Dog curled up in bed, and fell in to the deepest sleep I’ve ever had.

I woke up this morning, hearing Bess (my darling little dog) having her fur cut. Honestly, you’d think a wolverine was being tortured, not a a little terrier having her tummy trimmed whilst being cuddled and kissed! I laid in bed, opiate lozenge in my mouth, and waited for Mum to come and help me up. I felt wide awake, and decided to sit on the landing floor to cuddle the now cashmere soft Bess.

All was fine – I was smooched on the nose, and I held her in my lap – then I tried to get up. Because I felt awake, I forgot that the sleeping meds (of which I’d had more than I usually do) are also muscle relaxants. I’d put my wobbling down to the state of my feet, but oh how wrong I was.

I turned to kneel and push myself up…one arm gave out from under me, I grabbed the chair in front of me – forgetting in my panic that it’s a swivel chair – it spun around, my legs collapsed, I unintentionally flipped over and ended up with my head hanging over the top stair.

Poor Mum was stricken. Luckily, as it was ending, Dad came back in from the shops and ran up to help. I sat up, knowing instantly that I’d badly hurt my left elbow, which is already constantly painful, and my left knee, which is my best behaved one.

I was quick to reassure Mum that I was fine – explaining what had happened with the bloody chair and my rubber limbs! There were a few tears as the shock hit me, but then Bess appeared.

She has no understanding of EB. To her, I’m just one of the pack; I give her treats, I play with her when I can, and I give extraordinarily good tummy tickles. She knows when I’m sad, and she’ll stand on my lap, with her paws around my shoulders to cuddle me. Her big liquorice nose snuffling in my ear, her soft whiskers on my cheek.

But as I sat, booing on the floor, she rolled her most treasured possession under my leg…a soggy, grubby, chewed up tennis ball. She wanted me, or Mum, or Dad, to play. And that stopped the tears, because I had to laugh. In the midst of packing for hospital and panicking over what I’d just done, there was a little furry ray of sunshine at our feet. Bessie’s tennis ball is her ecstasy, and she wanted me to have it too.

She was jet black as a pup, but now her Yorkie daddy’s genes have come through, and she’s mostly silvery grey (with a ginger ‘tache!). My little, scruffy Grey Dog chased away the big Black Dog today. He’ll sneak back, but Bess will be there, shining with love and silliness, and she’ll see him off again.

Yesterday, I felt lucky, but I wanted to give my parents their freedom. Today I feel that, once again, something saved me. Something kept me here. Being agnostic, I won’t rule anything out. But I feel that if I keep being saved, there must be something I’m meant to do. I just need to find out what it is.

So until the Black Dog comes crawling back, I’ll have a good think about what I’m here for. Playing with Bess is definitely one of my purposes 🙂

M xxx

My Bessie Bear, chilling in my room, with the tennis ball!

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About last night…

In around thirteen hours, I’ll be heading off to hospital. It might be earlier, if things get worse, but I hope not.

Really, I should be in St Thomas’ A&E now, but there won’t a doctor there who will know what to do with me, and I really don’t want to spend another night in the Clinical Decisions unit. One night, three years ago, with an elderly man snoring louder than I thought was possible, and a heroin addict throwing tables around because he wanted Methadone, Dad awkwardly asleep in an upright chair, Mum curled up like a cat at the end of my trolley. No, not again.

So in about eight and a half hours, Mum will call the specialist nurse and tell her I need to be admitted. She will start the arduous task of securing a bed for me to collapse on to, and the Specialist Registrar of my Dermatologist will ask Microbiology which antibiotic needs to be pumped into my bloodstream, to force the infection out. I’ll be begging them for every pain killer I can have.

I feel like a failure. I’ve always had a sky high pain threshold, eschewing pain relief in favour of distracting myself. Music and a good book are my preferred methods. But I have never known pain like this, and even my strong opiate pain killers aren’t really helping. The fact that I’ve cried with the pain has been my parents’ indication of how much pain I’m in.

My right foot has myriad ulcerated wounds on it, and some are on areas that were already severely nerve-damaged. Imagine how an ulcer on your tongue feels… Now imagine that ulcer is four inches long… And it has siblings, all over you tongue, cheeks, roof of your mouth and gums… Now imagine someone is pouring vinegar over them, and they are so deep you can sink your teeth right into them. You’re getting close to how this foot feels.

On top of that, my Bipolar Disorder has reared it’s head. It didn’t occur to me last week, when I was a cheery and getting lots and lots done, that I was in a manic phase. I just wanted to think I was happy. Well, I obviously wasn’t, because the Black Dog has its paws wrapped around me in a vice like grip. I was managing to tell it to shush and be a good doggy when I was with people, or chatting on line, but tonight it broke free.

To be clear, I don’t think I’m unlucky, or that I have an awful life. I am so grateful for everyone I have who, for whatever reason, love or like me. I have a home, food, clothes, luxuries like the Internet and my iPad. I have healthcare, and some health. I could have a far worse disability or illness. I do thank my lucky stars, for all the good things I have, and all the bad things I don’t. So what I said wasn’t for my benefit…

I sent a tweet in which I said I thought I should let the infection take over, finish me off, and then my lovely, wonderful parents could have their freedom. And I meant it. It wasn’t a cry for attention or help, it wasn’t that I wanted my ego massaged and to be told how great I am, it was, is, what I felt/feel is best. My mum was sat in front of me, still wading through my dressing change, and I wanted better for her. I wanted her not to have to worry, not to sleep on mattresses by my hospital bed. I wanted she and my dad to go to bed at the same time, to travel and have fun together. Without a bandaged burden to consider.

But, for some reason, they won’t let me go. And I can’t go without their help.

So you’re all stuck with me for now.

I wanted to say a huge thank you to everyone who sent kind and concerned tweets, who offered support and prayers (I might be a non-believer, but I do appreciate people taking the time and having hearts open enough to pray for me. I’m sending love and good wishes back to you). And though I don’t believe any of the nice things you said, and probably never will all the time I’m a Bipolar Bear, I feel incredibly lucky to have made such fabulous friends via Twitter.

I hope you all know how lovely your hearts and souls are.

With love and thanks
M xxxx

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The Curse of Lottery Winners

Today, the winners of the huge £161 million Euromillions lottery win made themselves known.

Like most people, if I had won, I wouldn’t have breathed a word to anyone but my nearest and dearest, but there have been comments that the couple were pressured into making their announcement. Some said they were told it would be “safer”, but I have no good sources to back that up. Personally, I can imagine they were pressured, but mainly because it benefits the consortium to show the public that “rags to riches” stories do actually happen. Then more people go to buy tickets, and the owners cash in even more.

(I do indulge in a Euromillions ticket now and then, so I’m not condemning buying them. Just the profiteers pressuring winners to make such a potentially unwise decision.)

I can’t say I’m not a bit envious. I can’t imagine ever spending that much money, but I can imagine helping all of my family and friends, my favourite charities…the list goes on. And, not so philanthropically, buying a house with a library, and having a walk-in wardrobe filled with Vivienne Westwood and original 1920s dresses…and a holiday apartment in Paris *sigh*. When it was announced that there was only one winner, and I knew it wasn’t me, I thought “lucky bugger!”, and hoped it would be someone nice. Not another cocaine snorting, obnoxious oaf, dripping in gold chains.

I was amazed by what people on Twitter were saying about the couple. It’s human nature to be envious (personally, I don’t think it’s a sin), and people will always make snarky comments. I’m hardly Snow White in those stakes! But I think there’s a line between being a bit bitchy, and being outright cruel. The winning couple are both big, overweight, whatever you want to say, and the husband obviously has mobility problems as he uses a walking stick. They said that they have both had serious health problems in past few years. It sounds about time that they had some luck!

There were a few minor bitchy comments. That isn’t what got my back up. There was some name calling, which I won’t repeat, but most was based around characters from Star Wars and Austin Powers. That started to rile me, but worse was to come. Tweets and Facebook statuses such as “f*cking fat f*cks. Kids are starving and they’ll spend millions on burgers”, “first thing they should do is get surgery so they don’t look so f*cking disgusting” and “if there [sic] to [sic] stupid not to eat so much, it’s a wonder they could fill out the ticket”, with retweets and ‘LOLZs’, really pissed me off.

I have recounted these tweets because people on my personal time seemed to think I was overreacting. Maybe I am, but I just cannot see how such comments are justifiable. Why does weight have to be such an issue? Not that they need a particular reason, but their severe ill health, and subsequent mobility problems might just have something to do with their size. You can’t very well exercise if you struggle to walk! Not all big people are so because they don’t stop eating! It wouldn’t be acceptable to bring race or religion in to it, and rightly so. And I do think, that given their health problems, there is a hint of disablism, conscious or not with some of the commenters.

All the couple have done is win a game of chance, which anyone could do. They’re not (as far as we know, at least) criminals, hate-mongers or anything unpleasant. Just two people who are happy to be able to help their family and friends, and being able to travel in a way that accommodates their health problems, having not been able to before.

Maybe it is just life, but I don’t see how body fascism is that far removed from racism and disablism. I would also say the same if the nastiness had been directed at people who were very thin. I’ve had family members suffer with anorexia, I’ve had family and friends abused for being “big”, and I’ve had friends abused for being thin (which apparently equals being vain, shallow, and whatever else!).

Maybe it has really riled me because I’ve been bullied because of jealousy. Not because I’m rich or beautiful (definitely neither of those!), but because I got “special treatment” i.e. being pushed in my wheelchair. I’ve also seen my loved ones to be attacked due to jealousy over their partners, their jobs, their clothes, even their fingernails! It hurt them, and I hated to see it.

Maybe, in fact probably, the couple don’t care what people say about them. I’m sure they are on Cloud 9 right now. But maybe it will hurt them; wealth doesn’t mean you suddenly stop feeling pain and humiliation. Look at these celebrities bleating to the media.

Earlier I said that we could say “that’s life” whenever someone is horrid. I didn’t mean that all horrible statements are equal in their offensiveness, as I’ve said above, but that we could dismiss all hatred, racism, sexism, homophobia and disablism as such. You get horrible people saying horrible things in life. It’s also life that people are living in poverty and dying of illness, but we rightly act against those things. Conservatism believes we are all inherently bad and need controlling. I believe the opposite, that we’re inherently good, even though we might naturally tend towards some negative traits like envy etc, most people do far more good than bad. I believe that only the goodness in people can spark change. I guess that’s why those tweets upset me so much.

I do not think that everyone in the world is a horrible sexist, racist, disablist, fascist person; I’ve been mean, and I’ve insulted people and bitched, when the recipient or target has done something wrong or hurt me or a loved one – not that I’m excusing it – but these people haven’t hurt anyone.

I’d love some of the ‘haters’ to say why they think they were so much more deserving. Maybe they’d like to say here….

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