RIP

One of the factors in hiring my current carer, Hannah (18 going on 19, doing Art Foundation this year before disappearing off to uni in September/October), was that she understood long-term illhealth. Not because of herself, or her parents - because of her older sister.

Her sister had been born with liver problems and had a transplant, and lived her childhood and adolescence more or less healthy. In the latter end of her teens she started getting ill again. Livers, as with other transplant organs, don't last forever. She started at university in London but wasn't well enough, and ended up back at home, back to the local hospital which had been treating her since birth.

Hannah came to work/care for me in April 2010. Her sister had been in hospital for at least a month at that point, and she was never well enough to leave. The goal, Hannah said, was to get her well enough for a transplant and keep her well enough long enough for a really good match to come up. As a second transplant, they wanted a really good match to improve the chances of success.

In September 2010 a match came up; 14 hours later, the new liver was in place. Hannah's sister went slowly from intensive care, to HDU, to a ward, with two trips back into surgery to try to find an internal bleed. Finally, in November, she was allowed home after months in the hospital. And stopped taking her anti-rejection pills, which was only discovered when, a month later, she became ill and had to go back into hospital. She was 'let out' for Christmas, but only managed a few hours at home before being rushed back in with a chest infection that became severe. Back into intensive care.

She was sedated, ventilated, then given a tracheotomy. She was in pain. One of the drugs she was given caused an extremely rare side effect of paralysis, and they didn't know if or when that would leave. She couldn't move, couldn't really communicate.

Yesterday was her 21st birthday, and she died.

It's a very strange position to be in: Hannah comes here five days a week, every week. She's talked about her sister, and her sister's illness, with complete frankness, and Mum and I have become very involved because we like Hannah so much, and care about her. Mum had actually met the rest of the family once (they're friends with neighbours, and Mum met them at a party), but I haven't; and yet we are both so very sad about this.

It's not unexpected, although of course it's still utterly tragic; I suspect Hannah has basically been waiting for this to happen, and from things she's said I don't think she's really felt her sister was really still her sister. And she's said quite frankly that her sister didn't really want to be alive anymore (thus stopping taking the anti-rejection pills).

It's got me thinking about life, death, and life-prolonging measures. I know my Mum's thoughts, and making a living will is high on her list of priorities right now. She's come very near death many times - last winter I think the hospital were extremely concerned with the e-coli infection in her lungs that was resistant to three kinds of antibiotics. I went in to see her only once (I was very tired, and it's 20miles outside the city) but she wasn't really well enough for visitors. I know very well that if she ends up needing ventilation (a very real possibility given her lung conditions), she does not want to continue.

But what if she's on a ventilator...but there's a chance she'll pull through and improve? This is why Mum needs to make a living will, because I don't want to be in that position. I don't want to be there, with my mother on a ventilator, being told that there's a 5%, 10% chance that she'll improve. Because I would know her wishes and yet I know that I would not want to let her go. Because she's my mum.

I think I know that if she were in that position but would not improve enough - would never regain any independence or dignity - I would be able to respect her choices. But would I? I can't know, of course I can't. Nobody can know until they're in that situation. And yet I know Mum's views and wishes, and I respect them - I agree with them. I feel the same - if I were to end up barely alive, on a ventilator, paralysed with no idea if it would go...I wouldn't want to be kept alive artificially like that, but when I said this to Mum, she said she couldn't make that decision, that if there was even the smallest chance that I could improve or recover, she would cling on to it - the way Hannah's mother has, of course. And I can't blame her for that.

Mum is already kept alive artificially: most people don't realise that. Several of the drugs she's on are literally keeping her alive, and if she stopped taking them she'd die. Very quickly, in the case of the steroids - without them, she'd lapse into a coma and die. Unless someone intervened, of course. Papworth are an excellent hospital, and we both trust her consultant there implicitly, but everything they do is keeping Mum alive artificially. Without the antibiotics, the physio machines, and yes the steroids, Mum would be dead by now.

I know that for a fact: Mum's uncle had the exact same lung conditions, asthma and bronchiectasis, and died when he was 54. Mum will be 55 in April.

I've told Hannah to take as much time off as she needs, and of course I'm paying her compassionate leave. I doubt she'll take long. She's kept working solidly throughout her sister's illness, and she's the kind of person who wants to keep working through emotion. If she takes more than a week I'll be surprised.

No Choice

I've joined the blogging masses. I've had a Livejournal for years, and I'm on Twitter, but although I delve into disability in these, I've decided to create a blog purely for me, ME and all things disability.

This has been prompted by One Month Before Heartbreak, which has since Friday collected a whole swarm of blog posts and comments from disabled people about how the cuts - and the DLA 'reform' in specific - is going to affect them. I've been humbled, I've been shocked, I've realised anew that I'm not in this alone.

I have ME – Myalgic Encephalopathy. It’s sometimes known as Chronic Fatigue Syndrome, although that tends to include chronic fatigue, which is often a different thing entirely. ME is a neurological condition that is primarily known for causing extreme fatigue. My list of symptoms includes fatigue, post-exercise malaise, extremely poor temperature control, joint pain, lack of concentration, poor short term memory and insomnia. I also have vasovagal syncope, which means at any given moment when standing or walking I am liable to drop to the ground (we call them drop attacks), conscious but unable to move for several moments.

Looks like a nice list, doesn’t it? But what these things mean for me is that I sleep from maybe 1.30am to about 12 midday, if I’m lucky. It takes me about an hour to wake up because it takes a long time for my brain to engage, and for me to feel physically up to getting out of bed. I never ever have the energy to shower or bath more than once every 3 days (and I shower sitting on a shower stool, because standing for more than a few minutes is too tiring). I will spend most of the day very, very cold: my hands and feet particularly are so cold that they’ve been described as ice blocks. I can’t sit still for long because my knees and hips start to ache, but I can’t move about too much because I’m too tired. I can’t concentrate on reading or writing for long – at the moment I’m lucky to get a ten minute stretch, and I can only repeat that two or three times a day.

If I have to go out, I am taken out by my mother or my carer – and I don’t go out often. There’s all sorts of things to consider that able-bodied people take for granted, not just the sheer energy involved in walking about: noise and light stimuli, being unable to sit comfortably, being unable to control my temperature, having to interact with people who don’t know that if I trail off in the middle of a sentence it’s because I’m too tired to form the words. And of course there’s the drop attacks, which are dangerous for me – if it happens when I’m crossing a road, for example, or if I hit my head – but also make me the centre of attention, something that’s extremely uncomfortable. I do now have a wheelchair, and I use it for longer trips that are absolutely necessary – such as hospital visits where I know there’s endless corridors to navigate. I cannot propel myself, so I can never use the wheelchair to go out independently.

The most I can do in terms of cooking is heating up something: again, it’s too much energy, and too dangerous for me to be standing by the oven or the stove. It’s often a choice between heating up a soup or eating it – because even the motion of lifting a spoon to my mouth repeatedly is, on occasion, simply too much for me.

For me, ME is not only an illness it is a disability. I am disabled. I spend the majority of my life confined to my bed or to the only chair I can get comfortable in, an armchair. I do not look disabled – in fact unless I have a drop attack, the only people to whom I even look ill are my closest friends and family. My mother is able to look at me and know that I’ve overdone it – she says I have a grey, ghost-like look. But a stranger on the street? A doctor I don’t know? No. And of course when I am feeling a little better, that’s when people see me – on the days when I feel well enough to attempt the short walk to the post box at the end of the road, perhaps the rare occasion when my mother or my carer takes me to the cinema, or if someone pops in for a cup of tea and I brighten up. Of course I do – I’m seeing someone other than my mother or carer! They don’t see what happens afterwards: the way I literally cannot speak, cannot stand because my legs are too wobbly, the hours I spend curled up unable to communicate with the world.

My mother is also disabled – again, through debilitating ill health. She has asthma and bronchiectasis, which leads to frequent chest infections (she usually winds up in hospital at least once per winter). Through misdiagnosis she now has a suppressed adrenal gland, meaning she’s steroid-dependent. This has led to weight gain and advanced osteoporosis. Six years ago she broke her shoulder so badly it needed replacing; four years ago she broke her foot, and after six weeks in a boot she was discharged. Three years later, after finally getting someone to take it seriously enough to x-ray, she was told the bone had never healed, and there was some necrosis in the break. She’s since had an operation to fuse the talo-navicular joint, which was surgically a success but has led to problems walking and no reduction in pain. While recovering from that surgery she had a bilateral pulmonary embolism; she also, at some point that autumn (2009) gained a crush fracture in a vertebra of her spine. Again in that autumn, one of her lungs partially collapsed – we still don’t know why, but it is recovering slightly. That winter she had e-coli in her lungs and spent most of the winter in and out of hospital. She’s finally been seen by the pain clinic and is now more pain-free than she’s been for years, but as with me, we’re taking it one day at a time. 

She also has severe, unstable depression, and a diagnosis of Bipolar II – primarily because she goes psychotic on high-dose steroids. Which is unfortunate, since that’s one of the primary ways of treating her lungs…

We both now get help from social services; Mum gets three hours care a week, I get eight and half. Since we both employ very hard-working sixth form students, we can actually stretch the money a little further. Without it we would sink and drown. We ‘share’ the care – there’s no point putting on a load of my laundry if hers is sitting in the laundry basket, and similarly if the kettle going on we might as well both be made a cup of tea! But we know, and social services know, that for example when I get worse, Mum needs more help because I’m unable to do things for her; the same is true the other way around. And we tire ourselves out trying to help each other.

Benefits. Oh, benefits. The point of this wonderful campaign run by One Month Before Heartbreak. Disability Living Allowance. An allowance paid to disabled people to enable them to live. Not an out-of-work benefit, not a means-tested benefit. It is 'graded' according to need (although arguably there should be more rates, not fewer). I get higher rate mobility and medium rate care; Mum gets higher rate of both components. We use it to pay for the extra heating I need and for the car that we both rely on. I use it to buy extra clothing, because my temperature control is rubbish so I can be freezing cold in the middle of summer, or sweating hot in the middle of winter. I use it to pay for the delivery costs for the times when I literally cannot get out of the house for shopping. I use it for taxis, for the rare occasions when neither my mother nor my carer can drive me somewhere - and I mean to things like the GP surgery, or the hospital. 

We are, at the moment, basically living off it. And when (I'm positive - when not if!) Mum finds work again, DLA is what will enable her to work. Because without it we can't run a car, and Mum can't walk more than a few feet without pain. She will probably end up needing a wheelchair, and DLA will have to stretch to paying for an electric wheelchair - a manual is no good for her, she has an artificial shoulder that doesn't work properly. Without DLA she will end up all but housebound, and unable to work. I'll end up housebound and still unable to work.

She’s doing voluntary work at the moment, in her skills area – IT project management. She’s worked primarily in the public sector and there’s almost nothing available there now; she doesn’t have enough private sector work to get a contract there, not when her health is so precarious. She’s looking for work, sending off CVs and calling agencies every day, but it’s hard, and she gets very depressed about it. She’s claimed ESA, is in the assessment phase, but wants to work. There’s no reason she shouldn’t work – with reasonable adjustments. Ha. But the voluntary organisation is making those adjustments. They’ve moved the whole team to a ground-floor office, they’ve put a disabled parking space in just for her, and they are understanding if she has to take an afternoon off for a hospital appointment. She’s doing two days a week, and they’re getting a bloody good deal out of her, frankly.

Me? I would love to work. I've been known to say I would literally kill to work. But the truth is, to work - at least now and for the foreseeable future - would kill me. I would exhaust myself to the point of collapse, and then a cold would come around, and what would make other people sniffly and miserable for a day or two would knock me out completely for three or four weeks. And who would want me? I can't promise to be able to work at the same time every day or even every week. And I'd be a health and safety nightmare, with the fainting, which happens whenever I'm standing or walking between two and eight times a day.

But that's the point, isn't it? DLA isn't an out-of-work benefit. DLA is for all qualifying disabled people, to help them (us) with the additional costs of being disabled, no matter what those costs are.

So when the government turns around and says 'sorry, but we think you're unsustainable, and you're not really disabled anyway', I get a little upset. Okay, a lot upset. In fact I've been so upset that look, I've gone and blogged about how important DLA is to me. Without it I lose the ground I've fought so hard to gain. It's not easy having ME (not that I think it's easy having any condition or disability, I hasten to add). I've been told so many times that it's all in my head, that I'd get better if I exercised, that surely I'm exaggerating? It has taken me years to claim for myself the illness and the label 'disabled'. I don't like it, of course I don't, but for me it has become part of how I cope and live with myself.

I'm not a scrounger, or someone who's chosen this: I'm someone who's become disabled through a debilitating and misunderstood health condition. My friends and family know that I would do almost anything to be well enough to work. But because I am too ill - too disabled - to work, I am forced to live on the benefits provided by the Welfare State. I spend weeks - and I do mean weeks - filling in DLA forms and IB forms. When I'm migrated onto ESA (sometime this year) I am fully aware that I am going to once again face an enormous battle to get put into the Support Group, a battle that will probably end up ruining what little health I'm managing to regain through resting, pacing, and resting some more.

My mother has paid tax and national insurance all her life; when she found out about the DLA 'reform' her precarious mental health went down the toilet and she wanted to kill herself. And yet the GP, the consultants, her social workers all agree that she needs the DLA at the rates she's getting, and the DWP decision makers would have to be off their rockers to take her off it.

By now I'm sure I'm not making much sense; this didn't start out as a good day anyway (bad night with night sweats, meaning I woke up knowing it was going to have to be a shower day, which usually means everything else just doesn't happen). Others have spoken more eloquently, or have used facts and figures to show why the government is basically abandoning disabled people to rot and starve in their own homes. All I can do is talk about me, and my mother. She hates being reliant on benefits; so do I. We, like thousands of others, have no choice.