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.

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.