When Your Body Takes Another Road

Statistically, there will come a point in nearly all our lives when our body stops behaving in a “normal” way and doesn’t stop. Sometimes it’ll be sudden, some times it will creep up on us, and for some it will have simply always been that way. The thing that we have in common is a sense of loss for that normality, and a completely human need to grieve for it. This post is going to be primarily aimed at those that have acquired a long-term condition/impairment or had one worsen, as that is an area I have experience in.

Loss can be categorized as either physical or abstract, the physical loss being related to something that the individual can touch or measure, such as losing a spouse through death, while other types of loss are abstract, and relate to aspects of a person’s social interactions.

We all grieve differently, it’s far more complex than just feeling sad. While yes, some do feel sad, some also get angry, some withdraw, some cling, some seek justice, some seek to keep the memory of the past alive, some hunt for meaning, some wish to campaign for better, some choose to support others, some try to make a new normal as quickly as possible. Most will travel through a mixture those different states before “recovering”. Of course recovery is an odd one when what you are grieving is an abstract loss of normalcy. Gone is the “normally” functioning body and/or mind, gone is the normal way of doing certain things, gone are the “normal” expectations about how you fit into the world be it with friends, family or with your paid/unpaid work, gone are you hopes of being “healthy”, gone are the ways you learned to navigate certain challenges, gone are the dreams you had that relied on being able to function “normally”, and most hurtfuly, gone (or at least severely dented), is the idea that you are “normal”. Continue reading

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PIP Application Advice

I know a lot of folks that are either apply for, reapplying for and being transferred on to PIP. Heck, I’m soon going to be in the latter category. A question that often comes up is “How best can I apply?”, or “What should I write?”. Here’s my advice and I hope you find at least some of it useful.

Once you have you PIP form the best way is obviously to contact your local CAB and see if they can help you. They’ve done millions of these and know it inside and out.

Unfortunately the CAB isn’t always an option for many of us. Then we need to find ways to do it alone. In these situations I think it’s important to try to put yourself in the position of a DWP decision maker;

  • they are under pressure not to find too many eligible
  • they have to read a lot of these in a day
  • they are probably tired, stressed, and a bit numb to these applications
  • they’ve probably seen it all before

It shouldn’t be that way, but it is. If you can make it easy for them to give you points then hopefully they will

There is a simple formula I use to do these and it is as follows;

Firstly…

Look at the tables that show you what the criteria is for each section. You can find them in a handy table in this PDF from the Citizens Advice Bureau by clicking here. Or I will provide a list of the current points at the bottom of this post for those that would prefer it.

Once you have read those, look again at the wording and consider the following:

Does it apply to you?

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Recovery Vs Management

When talking about long-term conditions/impairments there is a tendency to talk about the individual being on a road to recovery. Where recovery is a mystical place in which the individual will once more be “the person they were before developing a condition/impairment”. Now that’s a huge ask! If you were to ask a non-disabled person to be like the person they were five years ago they’d struggle a lot.

I think we can look at recovery from two different angles,firstly the removal of physical impairment and then there is a mental recovery, the idea that one will forget the rubbish they’ve been through with their health and go back to being a “normal” non-disabled person. At this point though I think we have to drop the pretence that recovery is ever going to get you back to how you used to be. It is more that recovery is the road to becoming non-disabled. Something that’s not possible for many of us, and for those in doubt I’m going to look at the idea of recovery from a physical and mental standpoint now. Continue reading

It Hurts So Bad I Can’t Feel It

I’m going to talk a little bit about dissociation today, or more importantly I’m going to talk about dissociation when it gets out of control and becomes a problem in everyday life. I say this because we all dissociate, everyday, all the time and it’s important to remeber that it’s not always a problem.

What is dissociation?

In psychology, dissociation is any of a wide array of experiences from mild detachment from immediate surroundings to more severe detachment from physical and emotional experience. The major characteristic of all dissociative phenomena involves a detachment from reality, rather than a loss of reality as in psychosis.

At the milder end of things we have the everyday dissociation;

  • drifting off while reading or listening
  • feeling numb when dealing with difficult news
  • going through rote motions with no thought
  • creating sub-personalities (this is work Bob, this is party Bob and so on)

At the more extreme end of things then it can take on more distressing forms;

  • finding yourself in a strange place, unaware of how you got there
  • amnesia
  • depersonalisation – feeling like you aren’t in, or fully in your body and you are watching it act
  • derealisation – feeling like the world around you has changed, be it in appearance or in deeply held feeling
  • identity disturbance – this can vary from not being sure who you are or what your feelings are (usually because of a mix of the above) through to fragmenting into multiple alternate personalities.

Why does it become so extreme in some people?

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Falling into a Crisis

Mental health crises are an inevitable part of the course when you live with the after effects of trauma. PTSD (Post Traumatic Stress Disorder), or EPCACE (Enduring Personality Change After Catastrophic Experience) as they are now calling it is something that is an everyday part of my life. As with most things, some days it’s bad, some days it’s alright and some days it’s average.

Some days however, it gets bad and then it stays that way. Well, it actually gets worse. You see, I get exhausted from a lack of sleep, from being constantly on edge, and from fighting to stay in the present day rather than slipping into the scary past. When I’m exhausted I can’t manage those symptoms as well so they get worse and I in turn find them harder to manage. At that point I spiral beyond “bad” and into crisis.

I’m in the crisis spiral again right now. I know the drill, take whatever drugs you need to ensure you get some sleep and rest. Do whatever you can to isolate yourself from sources of stress. Once I’ve got the rest it’ll reduce the severity of the symptoms, and I’ll have the strength to manage the ones that remain. It’ll all be easier. Right now it doesn’t feel like it’ll ever be easy again of course, that’s the problem. I’m struggling to have faith that things will ever feel better, and for all I tell myself that’s part of the viscous cycle I can’t quite grasp that it is. This time, my mind keeps telling me, it’s different. This is the time you don’t get better, this is the time you get drowned by it all. Continue reading

Rights? I Want Liberation – BADD 2017

It’s blogging against disablism day today so I thought I’d get on and blog. For non-UK readers, or those in the UK that have grown up on US blogs, I’m going to use the following language here because;

disability defs

I’ve got to the point where I don’t think being for rights and social justice is enough to get rid of disablism.

When we look at the patriarchal capitalist system we live in, it becomes clear that disablism is a function of it. Anyone that doesn’t fit societies standard of “normality” due to a perceived impairment experiences it. The looks, the “oh, people like you can’t come in here”, the pity, the stereotypes, the anger, the judgement. As long as we live in a world that believes that the ideal body and mind is that of a “healthy” person, where “healthy” is a way of describing an “ideal” worker in a capitalist world, we will always have disablism.

To fight for rights and the associated justice, we fight to make this capitalist system more accommodating. But as long as it remains no amount of rights or justice will provide us with an end to disablism. Society will continue to praise the non-impaired, the non-disabled, and to look at those of us that don’t fit the bill as abnormal. Society will continue to make the harmful moral case that to be “healthy” is to be a “better person”. People with impairments will still be disabled people.

No. If we want to end disablism, and achieve liberation then we need to end capitalism and build a new society that no longer idealises certain types of bodies and ways of thinking over others.

Kidney Cancer; One Year On

This time last year I was 32 and I had not long been told that, while doing a CT of my upper GI tract for stomach reasons, they’d found a mass on my right kidney. I told myself it would just be a cyst but after another CT scan focusing specially on it I was told otherwise. I instantly thought – it couldn’t be cancer could it? I looked up the numbers and they reassured me. Less than 2,400 women in my age range (30-34), in the UK get diagnosed with cancer each year. That’s a tiny number. Then only about 1% have kidney cancer and most of those are hereditary – and luckily for me kidney cancer doesn’t run in my family. As you can imagine I felt pretty okay about it all going forward. My main worry was that they’d be grumpy about wasting their time on nothing.Kidney cancer incidence in the UK 2012-14. Shows a higher incidence for men than women, mostly affecting those over 50.

Kidney cancer incidence in the UK 2012-14. Image from Cancer Research UK.

However, from the moment I got the post scan appointment to see a Urologist things seemed odd. There was only a month to wait between the second scan and the appointment. The Urologist was not based at my normal hospital. When I arrived for the appointment I rolled into the outpatients waiting area and before I could say anything a nurse called out “Hello! You must be Emma. The doctor is just finishing something but come sit down here where it’s more comfortable than this area. I’ll sit with you now and be there through the appointment – would you like a drink?”. That is not my usual experience of hospital outpatients. With hindsight I shouldn’t have been as shocked then, when they told me it wasn’t nothing. But no amount of hinting could have prepared me to hear it was kidney cancer.

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