Why I’m Blunt

Or “Why I talk about my illness and disability so much and why I don’t talk about what my life would be like if I were well”.

I am very straightforward about being ill and how it affects me. I openly discuss diagnoses, symptoms and treatments with friends and I write about my illness a lot on here. Through the number of times my posts on chronic illness are being shared and the comments and commentary I see on and around my posts, I know that what I say here reflects the experiences of other chronically ill people. That recognition of shared experience feels important to me; we are a scattered community and many of us are alone or isolated in some way in offline life.

It’s in my offline life that I am sometimes accused of being “blunt” and I guess I am. Almost all of the time, I don’t pretend I’m okay when I’m not. I can hide a great deal of pain but I won’t deny it if I’m asked how I am. My stick (or wheeled walker) and my gait and other visible signs of disability I don’t hide. When people are getting to know me, one of the first things I make sure to tell them is that I have an incurable chronic pain and fatigue problem and that means I can’t really do x, y, z things and I might need some assistance with p, q, r things. I know I could just say “I can’t do this” and “I need some help with this” but it feels important to me to get the “incurable, lifelong pain and fatigue” said and understood. People don’t like hearing it and don’t know how to react and I can sympathise with that. But I need the people around me to have realistic expectations of what I can do and what my life is going to be like and getting “There’s no cure” and “I am in pain” heard and understood early on stops awkward conversations later on.

The other reason I’m so very blunt here and everywhere about how ill I am and how it’s incurable is, well… it’s a mental defense strategy. I *have to* be okay with being ill, I *have to* make myself comfortable with the knowledge that this is normal now – the alternative is spending my life grieving for a future that never happened, the life I could be living. It’s not that I don’t think about it sometimes, I do. It’s more that my mental energy is better directed at thinking up possible futures for myself *that I actually have half a chance of making happen*. There’s a lot that I can still do, a lot to work towards. I have no choice but to be okay with having all my plans and dreams from “before” fade into nothing and replaced with plans that centre what’s really important to me.

And so I’m blunt with others. To shut those “But what if you get better / if there is a cure / if you try this snake oil?” conversations down instantly. To practice being okay with the word “incurable”. To hand part of the discomfort our society has with illness and ill people to the other person to carry so I don’t have to deal with it.

To make myself into someone who accepts that his reality is real and okay, someone willing to work with what’s he’s got, someone grounded in the reality of his body with all its needs and capacities and limitations.

That’s why I don’t talk about what it would be like to be well. Imagining wellness for myself means imagine something my doctors have told me is virtually impossible. I don’t want to get emotionally invested in an idea of what my life could(n’t really) be because I don’t want to deal with the inevitable frustration and disappointment of never being able to achieve it.

I’m blunt because I’m honest. With myself and with you. Illness is my reality and it’s likely to be my future. I won’t sugar-coat that for any adult person. I’ll be honest and clear and my voice will not tremble or break when I say that this illness is life-long and disabling. I have to live with that. If you want to be part of my life in any way, you have to live with it too.

Addendum: above is entirely about my personal experiences, if you think it’s about you it maybe is but it’s also about dozens of other people. “There is no cure” is a sentence I have actually heard spoken to me by actual doctors, as are the words “incurable”, “chronic” and “progressive”. If you suggest I could “get better” you won’t be the first but you’ll still be wrong.

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Where’ve I been? Getting ATOS-ed, that’s where

I realise I’ve not written here in about a month, quite possibly the longest pause in my blogging since YetAnotherLefty came into being a little over two years ago. I (perhaps vainly) imagine that my readers have been asking themselves where I am and when I’m going to get round to writing something again and while I don’t really owe you guys anything, I feel an explanation is due.

Quite entirely simply, the explanation is “I got Atos-ed”. Again. And it was humiliating and triggering and awful and it harmed my mental and physical health. Again.

I want to try to go into that and expose what it’s like to claim PIP and/or ESA (the two kinds of social security / benefits payments offered to disabled people in the UK). Every person I’ve described the process to in real life has been horrified. Sometimes I wonder if people just don’t know or just don’t WANT to know how their friends, family, neighbours who are disabled are being treated. I know people don’t want to think that it could happen to them – when the various changes to disability benefits in the UK started, I was CONVINCED that they were not relevant to me or to anyone I knew. I was very, very wrong. The illnesses that cause me constant pain and fatigue had already begun. The disabilities I’d lived with from infancy should have got me DLA/PIP if anyone had thought to apply.

For both PIP (a benefit that most disabled people qualify for and that is for people who can work as well as people who can’t) and ESA (basically a replacement income for those too ill or disabled to *seek employment*) you first have to obtain and fill in a paper form. On that form, you will be presented with lists of tasks and the option to tick that you either can or cannot do those tasks. And then you’re expected to write in minute detail exactly WHY you can’t do the things you can’t do and how much help you need and why you need that help and exactly which symptoms of exactly which condition(s) prevent you from doing the thing. For EVERY. SINGLE. THING that you can’t do. There’s about thirty pages to the form, and four or more tasks on each page, many of which have subheadings.
It’s a lot of writing, especially if this is your first such form. Oh, and the space to write in is tiny and they don’t actually tell you that you need to detail the whys and hows of every last thing you can’t do without help.

And then they make you back everything up with letters from doctors and carers and social workers and anyone with a title regardless of whether or not they’ve ever seen you at home.

And then they usually still insist on a face to face assessment. Which amounts to meeting a stranger who’s been given a Cliff Notes (think literal bullet points) version of what you wrote on the form in the first place and then questions you in detail about all your conditions and all the things you can’t do and precisely WHY you can’t do them, give examples of times you couldn’t do this, what would happen if you didn’t have the help you have, but WHY does X condition mean you can’t do Y task? how come you can do P but not Q?… the form all over again but with another person asking the questions and not especially caring about being sensitive or kind (in my last PIP assessment, I think we spent a whole ten minutes talking about my bowel and bladder problems and at least 20 on “But WHHHY does severe anxiety prevent you from mixing with people and going to new places on your own?”).
And then based on a report about the face-to-face (including, no joke, comments on whether or not you “looked anxious” in the waiting room) your medical evidence and the damn form, a complete stranger who you have never met, who has never observed you in person, decides whether or not you’re disabled/ill enough to be given a small but often life changing sum of money.

And I think readers of this blog are probably vaguely familiar with all of the above. I needed to spell out the background because what upsets me most about this whole charade, what explains why I become hazy and distant and slightly more mentally ill immediately before and a short while after a face-to-face assessment or a frantic couple of weeks writing the damn forms (every three to six months I have to do one or the other as I get both PIP and ESA)… is the effect this has on my (and likely others’) sense of self, my identity.
The forms and the system reduce me to a list of “I can’t x without y help because of p,q,r symptoms of z condition”. I experience my life – and my self – as a series of events caused or explained by my inability to do things. My brain processes experiences as potential examples for the damn forms and assessments. I feel like a fraud if I decide to take the pain and the consequences of doing something I really really ought not to do. I feel guilty about spending money because at any moment a brown envelope and a few strangers could take all my money away. I worry about that one picture of me on Instagram where I appear to be standing unaided with a baby in each arm – I know the reality is that I’m seated on a stool and there are two people just out of shot ready and waiting to take one or both babies from me as soon as the photo is done – I still worry about what it looks like.
The logic of the form – that one should be able to work and if you aren’t you better have a detailed explanation of precisely why – permeates my brain. I over-explain why I can’t or won’t do things to friends and strangers who would happily have accepted “I can’t” as its own reason. My depression latches onto things that I can’t do that someone my age “should” be able to do. I feel ashamed and scared to admit that I am “on benefits” and likely will be for the rest of my life.
On my “good days”, my depression and anxiety still interject to make me question if I even “deserve” to get paid to not-work (because anything even remotely like full time work would seriously harm me) and if my more expensive or frivolous purchases are justified given I don’t “earn” my money. On my bad days, lying in bed, my brain idly writes new paragraphs for the damn forms.
The system for getting these payments leaves me constantly thinking about what I CAN’T do and why. That can’t be good for me but I can’t stop it. A few more years of this and I imagine it will become a permanent subroutine in my brain, figuring out what I can’t do, what help I need, why I need help, how seriously I’d be harmed without help.. a huge portion of my brain forever ruminating on something that doesn’t help *me* at all. When I could be thinking about my writing or learning or having fun or…

So that’s where I’ve been and where I’m at. The DWP are basically inside my head and critiquing my every action. And it hurts.

And yet… until the system is fixed, I still advise disabled friends to consider putting themselves through it. Because the money maybe a modest sum but it’s LIFE-CHANGING. It means I don’t have to worry about affording a meal in a cafe or a takeaway when I can’t figure out all the steps to making my own lunch. It means I can get a taxi if I need to. It means I can pay bus fare for a friend to accompany me to a scary new place. It means I can afford food that isn’t beans. It helps but making it happen hurts. Possibly permanently. It’s a bind and I respect the choices people make about whether or not applying for PIP, ESA or both will be “worth it” for them.

Benefits Update

A full 16 months after I applied for ESA, I’ve finally got an answer. I’ve been put in the Support Group which basically means that I don’t have to work or seek work because I am too ill and disabled to be reasonably expected to try to find work that I can feasibly do and employers willing to make the many, many adjustments that would be required to make that work accessible to me. After literal years* of financial insecurity due to disability and ill health (including times when I had no money of my own) I finally have something resembling security – money to replace the employment I cannot be reasonably expected to seek or find until and unless I get much less ill (unlikely to happen as my physical illness is chronic and incurable and my mental illnesses are chronic and not responding all that well to treatment) or society gets MUCH, MUCH less disablist and much, much more inclusive and accessible (more likely to happen but still years away). I view it as somewhat akin to compensation – money to live off in recognition that between my body and the society I live in paid job opportunities for me will be close to non-existent but I still deserve to live a good life.

So, what now?
I’ve bought quite a few things lately that I’ve not been able to afford for a very long time – a mobile phone that actually works, a winter coat, new shoes, a Blue Badge and a Disabled Person’s Railcard. It feels odd both to have these things and to know that I can buy such things without worrying about whether I can also afford to pay my rent. This security is unfamiliar to me, I find myself still acutely aware of when each payment is due to come in and when my rent and direct debits are due to go out.

As I don’t need to look for or get a job, I’ll have a lot of free time. I’ll definitely be blogging and I’ve got some great ideas for posts lined up. I’m trying to get back into reading regularly and I want to write more fiction. In fact, I have the slightly ambitious aim of writing the first draft of a novel this year (I’ve written novels before but not since my teens). I’m also looking for very, very part-time volunteer activities in Manchester feel free to contact me if you’ve got an opening you think I could fill 🙂

In the medium term, I’m on a few NHS waiting lists to hopefully get some treatment for my my mental illnesses. I don’t expect to be “cured” but there’s a lot of scope for improvements in managing my illnesses and maybe even reducing my symptoms. A man can hope, right? Learning how to make a phone call without breaking from fear and panic, for example, would greatly improve my life and it’s a goal that is ambitious but (I hope) achievable.

Even longer term, I want to be a parent. I’m hoping to be on the adoption register as a potential adopter before I’m thirty. In order to get there, I’m going to need a few things I don’t have yet: a permanent home with at least one spare bedroom, more local friends than I have now, possibly a wheelchair and/or a service dog. I’m not hugely sure how to go about getting these things sorted but not having to worry too much about continuing to afford to eat and pay rent frees up a lot of time and energy for planning the little steps to the bigger goals. And I know what my big goal is: to be a good parent to at least one someone who didn’t get a great start in life.

So, that’s where I am. Right now I’m still pretty poor compared to most people but I don’t have to worry too much about it any more cos (for now at least) I know that I will have a regular income and that my rent will be paid. This means I can concentrate on other things. Which is something I’ve not been able to do for a long, long while.

*I’ve been trying to apply for DLA / PIP and ESA since 2011, the present year is 2015.

Social Care Update!

In my last really personal post, I talked about how reablement services can be (are) really abusive and gaslight-y and how I was told that my care needs had been found to be “moderate” rather than “substantial” or “critical” so I was to be left with no care and no support to find any… Well, I was very brave and I complained to the council. I was prepared to fight, to take it right to the top and get the press or my MP or the Care Quality Commission involved if need be. The council saw that my complaint was very serious. They reinstated my reablement care and appointed me a different and more senior assessor who listened to me and took my (quite severe) mental health problems into account.

Quite a lot more was written onto my new assessment form. A support worker came to my assessment to help me talk about the very difficult and distressing details of what care I need and why. My new assessment, full of details about my mental and physical ill health, was taken back to the council and I was (finally) awarded long term care.

From the beginning of next week, I will have people making sure I eat and wash and look after myself. I’ll even have someone to come round and help me keep my bedroom tidy. With the assurance that I will be prevented from neglecting myself with regard to these basic needs, I feel like I have a foundation upon which to base myself as I try to build a life in my new city. Knowing each day that I definitely will eat an evening meal and when that will be, keeping myself and my surroundings reasonably clean, with these things taken care of I can do anything – write a novel, get a voluntary job, survive the therapy waiting list, go to social events… maybe even get on a bus to somewhere I’ve never been. Without support, those basic needs quickly stop getting met and I have no foundation on which to build a life of new experiences, of practising and learning old and new skills, a life in which happiness is not a fleeting dream but a real possibility.

Less than a hour’s support a day makes that much of a difference to me. Without it, just surviving is incredibly difficult; with it, a life full of wonders becomes possible.

When your council next cuts support for adult social care, as councils regularly do, think about me. Less than £10 a day of council money is for me and many others like me, literally a world of difference.

Ten things they don’t tell you about life with chronic physical and mental illnesses

I live with physical illnesses that cause chronic (ie long term) pain and fatigue. I also have several mental illnesses, including depression, anxiety and post-traumatic stress disorder. For all of my adult life, I’ve been regularly seeing doctors and counsellors and therapists and physios and nurses and social workers… all of them somewhat aware of my long lists of diagnoses and treatments. Here’s the important stuff that none of thought to tell me:

1. Becoming physically ill from a mental illness or mentally ill from a physical illness is really, really common.

PTSD can cause chronic pain. Chronic pain can cause or further exacerbate depression. Depression usually comes with anxiety. Chronic fatigue and pain are common symptoms of depression… Basically, human brains and bodies are complex systems and disruption in the functioning of one part will often have repercussions elsewhere. I am not, as I’d feared, somehow especially weak and unable to cope with one illness without developing more – I’m experiencing something fairly typical for people who live through certain kinds of trauma.

2. The brain is a part of the body and mental illness can be whole body illnesses. Likewise, whole body chronic illnesses like fibromyalgia and ME can and do affect the brain and so the mind

While medical professionals talk of me having several different illnesses (with overlapping symptoms) it often makes more sense to think of my mind and body as experiencing one great big illness that sometimes needs tackling at the level of its component parts and sometimes needs to be treated as a whole. Sometimes fatigue and pain and despair need to be tackled as just that, without worrying too much which part of my illness is causing them right now.

3. Being chronically ill, mentally or physically or both, makes it really, really difficult to tell when you’re acutely ill and need to see a doctor
When you wake up feeling like you have the flu every day it gets kinda hard to tell when you actually have got the flu. When nausea, weight gain and a tremor are all symptoms of your illnesses and possible side effects of your medication, it’s easy to ignore them when you should maybe get them checked out (I eventually did, got more pills for the nausea, some disapproving looks about the weight gain and a diagnosis of “benign essential tremor” for the shaking).

4. There is no surefire way to determine whether you’re actually really tired from fatigue or demotivated from depression

The only way to find out is to try to do something, if it hurts and you get post-exertion malaise, it was probably fatigue

5. Depression and anxiety can physically hurt; fibromyalgia and ME can make you cry with fear, pain, despair or anger

6. You cannot deal with only one illness at once, even if that’s how doctors, the dwp, your family and, well, everyone else, seems to think you should deal with it

PTSD flashbacks can steal lots of energy. So can strong emotions from depression and anxiety. Panic attacks can hurt and make your fibromyalgia flare up unexpectedly. Depression will use your new slower, sleepier pace of life against you to call you lazy or insist that other people are talking about it behind your back. Self-harm becomes easier than ever when your body feels pain at every touch and missing a dose of painkillers can guarantee agony. My body and mind are experiencing massive malfunction and problems in one area cause problems elsewhere. Most of my treatments are just fire-fighting as problems spring up everywhere.

7. People will try to tell you you’re just mentally ill or that you’re not mentally ill
Both assertions are unhelpful and reductive. You are ill, both your body and your mind are affected. It’s not your fault but you can’t treat just the body or just the mind and expect the problems to all go away.
8. The illness(es) you’re experiencing is not your fault
No one has ever said this to me and I’ve often wished they would. I didn’t do anything to deserve this – and if you’re ill too, you didn’t either.

9. “Incurable” doesn’t mean “It will always be exactly as bad as it is right now”

I really, really wish someone had explained this to me and I hope you remember it. There’s a huge, huge space between “how bad it is right now” and “how well people generally feel”. Incurable just means you will never get (back) to “well”. You can and will live in the space in-between. You can feel better, you’ll just never be well. I know that still sounds really difficult and scary but it’s more survivable than “I will feel this awful forever”. Mental illnesses like to extrapolate futures full of acute awfulness and I am telling you that’s not quite how it is.

10. A surprisingly large amount of pain and suffering is survivable and can become a “new normal

I know this doesn’t sound like much of a positive but bear with me. As well as medicating my symptoms, which lessens my pain / fatigue / anxiety / panic / despair / involuntary thoughts but never stops them entirely, i have found that as the years go by, previously unendurable symptoms start to seem like normality: like how music and chatter in a shop can fade to background noise. With no real choice but to get used to pain, fatigue and involuntary thoughts, I have settled into accepting levels of all three that would previously have brought be to tears.

 

And one extra:

11. It IS really and truly possible to be happy *and* ill.

I am happy. I love myself, I love my friends and family and, yes, I love my life. I can’t always keep ahold of the knowledge that there is more to my life than pain and fear and fatigue and despair, but I often can and then I am happy. It is possible. I wish someone had told me that. It’s possible to be okay- and more – whilst living with multiple illness, physical and mental.

Get well soon!

I keep nearly writing this post. Because people keep telling me to “Get well soon!”. I can tell they mean it kindly and even genuinely wish that I will become well. But the thing is… I won’t. I can’t.

I have fibromyalgia. Fibromyalgia is chronic (which is medical jargon for “long term”) and it is incurable. Almost no one ever diagnosed with fibromyalgia has ever spontaneously ceased to have it (as sometimes happens to people with milder forms of me-cfs which is a related condition). Basically, once you have fibromyalgia, you have it for life. I am going to be ill (and from time to time very ill) for the rest of my life.

I’ve described fibromyalgia here before in quite a bit of detail but forgive me for briefly describing it again here. I am in pain. My muscles and joints hurt all across my body, every concious second. Being touched, even gently, is painful. I take a lot of medicine for the pain but all it can really do is lessen it, soften it – not make it stop. So it’s often not strong or unbearable pain but it’s always there. It is both physically and mentally exhausting to live with constant pain. It leaves my muscles weak and fatigued and as a result I can barely walk unaided.

I will have to take pain relief daily for the rest of my life. I will likely always need mobility aids. I will probably always need other people to help care for me.

I cannot describe this as “wellness”. I am not well. I will never be well again.

I can and do live with that. I’m usually okay or at least at peace with it. I’m happy and I love my life and I cope.

But sometimes someone is well-meaning and kind and wishes me “Get well soon!” and the weight, the heavy, solemn seriousness of being incurably ill, suddenly bears down on me.

***

I wish people “Feel better soon!” because I don’t know what’s going on with them. Maybe you might want to consider adding this phrase to your vocabulary.

Addendum:
Yes, I know there are scientists working on cures. But they’ve been researching for 50 years now without yet working out what fibromyalgia *is* so I’m not holding much hope for a cure to be discovered, trialled, found to work *and* made available on the NHS during my lifetime.

My Normality – Life with Chronic Illness

The thing that continues to amaze me about chronic illness is the ability to get used to it. Seriously. I, and others like me, live day in day out with pain and illness and suffering that other people experience only for short periods of time, if at all. And yet, we manage and we often do much more than just manage.

And I want to try to write something about that. If only to remind myself of the strange fact that what has become my “normal” is not “normal” for most people at all and if I think I achieve very little compared to others, perhaps that says less about my abilities and more about the fact that there’s a whole bunch of stuff I have to deal with that other people rarely experience.

So, what does my “normal” feel like?
The short answer is: persistent pain and exhaustion, punctuated with sensory overload, anxiety, suicidal thoughts, sheer terror, confusion and, of course, every now and then becoming temporarily completely blind for no discernable reason. That’s my normal. It’s been normal for long enough that I sometimes forget that it ever wasn’t. It’s only actually been this way for a couple of years.

The longer answer:
Imagine being ill enough to take a day off school or work. Muscles aching, hot and cold, deeply tired and not really able to concentrate. Nauseous. Full of pain and tired and not much else. Imagine trying to “sleep it off”. Only it’s still there the next day. And the next. And the next. And… forever. Or imagine that tiredness and aching you get after doing a lot of exercise, the kind that lasts a day or two. Imagine feeling like that from walking down the street to the post box. Imagine feeling like that whether you try to exercise as much as ever or do less. Even if you barely do anything at all. Put those two together, imagine the feeling you might get if you were really quite ill but insisted on exercising a lot anyway and then that pain and tiredness never ever leaving and you might have an idea of what fibromyalgia feels like. And to me, that’s normal. Oh – and also, I feel pain whenever anything touches me – pain from resting my arm on the desk, pain when my partner hugs me, pain when my mum’s dog brushes past my leg, pain from creases in my clothes or my sheets, pain when someone taps me lightly on the shoulder. Even pain as my fingertips hit the keys of the keyboard. This is normal, this is my everyday baseline for pain – everything hurts

My autism has always made my senses hyper-sensitive – I see light brighter, hear sounds louder, smell and taste stronger than most people. So what is tolerable or even pleasant for most people can be overwhelming for me. Supermarkets and crowds upset me. My brain receives more light and sounds and smells than it knows what to do with and sometimes it just gives up all together and all I can think of is getting out – or all I can do is stand there, unable even to work out how to leave. I have my workarounds and coping methods but the basic fact of the assault on my senses and the overwhelmed feelings I get when my brain cannot take in any more sensory information is always there and always will be. My brain is set up that way.

The illness that I have that I never believed would become my “new normal” is Post-Traumatic Stress Disorder. But it has. My sleep is disrupted by terrible nightmares of things that happened a long time ago and things that didn’t happen but might have done if things had been different. I have terribly vivid visions of awful things happening to me and the people I love. Dreams built out of memories, fears and secrets direct from my own subconscious. For a while this was happening only once or twice a month, since moving house it’s been every single night. And every night I wake up from some awful dream that I still can’t tell for sure whether or not it is real and happening now… and I find my comfort objects, breath deeply and remind myself of my name and age and what year it is, where I live and the fact that the people who hurt me are far away, the things that happened are in the past and I am safe. Then I go back to sleep until I wake up again and do it all again. I get flashbacks during the day from time to time. If I can, as soon as I realise that I’m reacting to something that isn’t presently happening, I take myself somewhere safe and explain to myself what’s going on. I can sometimes do this without crying and without anyone noticing. because it’s normal for me. It is normal for me to feel as though my life is danger, to remind myself to take a second look and decide whether or not the danger is real and to find something to ground me and/or somewhere to go to cry  and to calm down by reminding myself who and where I am. My brain is, I know, set up like an over-sensitive car alarm – it goes off at the merest hint of danger. And like that over-zealous car alarm, it’s usually wrong and that’s often apparent at the second look.

I’ve already written about my depression and that too has become “normal”. Walking with a stick has become “normal” – to the extent that I occasionally think other people are strange because they don’t have one.

I’m not sure how to end this because I’m not looking for sympathy. I’m not even complaining. Just… this is what life is like for me and I’m okay with that. And if I maybe can’t do as much as other people, this should go some way to towards explaining why. How much can most people achieve when they’ve got the flu? When they’re in fear for their lives? That is my normal and I do what I do on top of living with that. So I reckon if I achieve more than just surviving, I’ll have achieved quite a lot in life.

NOTE: I am receiving appropriate medical treatment for all of the above. This is not a description of my life before treatment or what my life would be like without treatment – this is my life as i live it taking eight different medicines and counting.