May 18, 2013
I did something very rash this afternoon. I paid to take Dad out to the local cinema to see the new Star Trek film. For those who aren't already aware, I hate public spaces. I hate the noise, the crowds, the mess, the stink, the brightness, the speed at which everything moves and well, everything about it.
It's not a mental condition to be scoffed at because it ruins your life and that's before agoraphobia has crept in through the back door.
Photo by MGL
I took it upon myself to do this today not for myself but for my Dad. He wanted to see the film but didn't want to go alone, and I felt bad for grumbling 'no' when he asked. I was also spurred on by Matt Haig and his blogs on Booktrust, which revealed what it's like to live with mental health problems.
After reading what Matt had to say, I did something that I find difficult; I thought outside of myself. I come across as a narcissist but it's not an option. I have hard time connecting to my feelings and understanding that people have feelings too, and how that feels. The will to empathise is there but the capacity isn't, not in its entirety.
So I paid a stupid amount of money for cinema tickets, packed my bag, dosed myself with Vallium, wrapped myself up (cinemas are always fucking cold), and donned my shades.
I made sure to book the seats just where I needed them too, just in case I needed to leave. We settled into the screen room with a drink and popcorn (I wanted an authentic experience for my Dad because it's been so long) and sat through the film. I'm sure he enjoyed it but I spent most of the time fidgeting and flinching. It was too loud, too bright and the things on the screen were too big and moving too fast. I'd forgotten my earplugs so pulled my hood up to muffle the sounds, intermittently plugging my ears, and distracting myself with a Chunky KitKat whilst trying not to vomit, and figuring out where I could vomit should the bile arise.
In addition to this massive sensory overload, I was sitting in a big, loud room surrounded by strangers. I found this abnormal as opposed to a natural human thing to do.
The film finished and to top off the day, I got Dad and I some nosh from a fast-food place. The whole experience, film, food and all, was hard. It was uncomfortable. It was something that I never want to do again because I gained no pleasure, confidence or strength from it.
There are many, including the mental health folk who presume to know what's best for me, who will argue, until the cows come home, that this exposure is a triumph. It's a great leap, a step forward, the beginning of my recovery.
No it's fucking not.
I'm exhausted. I'm stressed. I'm traumatised by having to be around people in the dark for that long.
Cognitive Behavioural Therapy (CBT) is all about taking gloomy, negative thoughts, challenging them and turning them into life-affirming, positive components for the recipient to absorb and live by. What I did today is a typical exercise: face your fears, challenge them, destroy them. The only problem is, it's not that simple in my case.
Assessments for my mental health have been inadequate. There are things that haven't been explored that should have been, which makes for an incomplete and messy picture of what's going on. And in the meantime, I'm following the CBT rules because they're the only thing I have. Only, they're crap and don't work properly. I spend hours every week challenging my negative thought processes and, yes come out with more helpful alternatives, though I remain haunted by one thing.
It all feels wrong.
I've tried challenging this but the result is the same. Why isn't this working? This article explained a lot. Basically it says that whilst CBT can be really effective, it can sometimes leave a patient in disarray. Mental health issues might be too complicated for such a straightforward approach or the individual may have most likely been misdiagnosed. The therapist might not be looking at the bigger, humane picture. Psychiatrists might decide that an individual isn't 'suitable' (awkward, unpredictable, unwilling) for CBT; other conditions can also impact on the effciency and success of CBT, both mental and physical. For example, I'm totally confused as to how I'm meant to work within new cognitive parameters when my social phobias, agoraphobia and other health problems not only contradict the therapy but outright subvert it.
How is it possible to sit in a cinema and be happy, relaxed, feel safe, put your fears in place when it all feels so wrong? And why isn't it okay for all these things to feel wrong? Where are the rules, written in black and white, enshrined in law, stating that I am legally bound to be happy about situations I dislike with all of my heart?
Why is it so hard for people to accept that we are not all the same, that others thrive on things that a lot of people would lose their sanity over?
I don't want to be an isolated recluse for the rest of my life. I would like joy and close friends, a partner, a safe home and activities which both challenge and stimulate me. Oh, and a pug named Horatio. And a small, manageable garden.
I don't want loads of money, a flash car or fame; I don't want to go out drinking in crowded bars or eat at fancy restaurants; I don't want to be directly in the public spotlight; I don't want to go to the cinema again (seriously, I paid over twice the price of the DVD which will be out in a few months, on the tickets alone); I don't want to be part of the massive global world because I don't believe in it (I believe in small communities); I don't want to have the same cultural interests as everyone else, or the same sense of humour, or the same outlook on life. I don't want to fight or be manipulated.
I want to be me.
I know that I have conditions to manage and that their certainty is a matter of opinion. I'm prepared to explore these conditions within parameters that stretch me but don't endanger my stability. I'm scared. I know what I want but everything that's meant to be helping me get there is leading me in an unsuitable direction. All the professionals in the world can insist but if what they say feels wrong, if my solar plexus aches and that voice in my head says
“uh Sam, buddy. Nah…”
I'm not about to do shit that I don't want to. Anything or anyone that states I have to and is not within moral and ethical standards, or within the law (this one worries me because mental health law disables more than it enables) for insisting that I should, can jump ship. They're breaching my human rights, that fundamental right to say 'no'.
I won't have that taken from me. And that attitude feels so, so right.
February 12, 2013
The more I think about my circumstances, the more I am unnerved by how much they're costing me.
Two perspectives are obvious: the personal and the financial. How much is living with mental and physical illness really costing me? How much is it costing the services that support me?
On a personal level, the cost is enormous. Apart from missing out on all the things that a healthy individual my age would be engaging in today, like socialising and going to the gym, the deeper deficit comes in forms of things that are mostly undetected: my crippled self-esteem, the lack of motivation, bouts of confusion; the long-term effect of medication on my organs, the emotional damage that comes when another treatment / doctor / approach fails to deliver.
That's a mere handful which can be plucked from the pile. Other things too, things that we all take for granted, are missing. Smiling, for example. Feeling happy. Even when I do manage to muster a laugh or a grin from the depths, it's underpinned by the sensation that it's not the done thing – I feel like an outsider for expressing a positive emotion through muscular gestures in my face. Sometimes it's because I don't believe I should be smiling but mostly it's because there's more to be anxious, worried and depressed about.
My favourite 'positive thinking' fact that's been slung at me over the years is:
“You know, it takes more muscles to frown than it does to smile.”
Yes well, my face gets a better work-out than yours. And there's another few pennies thrown out: optimism, empathy and gratitude. And these pennies all add up in the end.
I recently did a quick psychology measurement scale to give a general idea of how much stress I experience in my life and thus how susceptible I am to potentially developing chronic illness. A bit of a no-brainer considering I already live with chronic health problems but I took it anyway, being geared toward bettering myself.
After tallying everything up, my score came out at a respectable 1,198 points. Then I read what that number meant and almost lost control of my bladder, partly from panic but mostly from amusement: scores over 300 are a general indication that the individual will probably develop some form of chronic illness in their lifetime.
Well blow me down. And the scale whilst you're at it.
It turns out that life experiences are stackable, which accounts for my high ( LOL, high) total. I'm pretty much up to my eyeballs in Stress Debt, which makes my overdraft look like a fluffy, goose down duvet. I'm not yet thirty – what is the interest on all of this? What is this going to continue to cost me and are the bailiffs going to come round any time soon?
I expected this revelation to cause me even more problems but it's done the opposite. Like my Mum who quit smoking immediately after her first major heart attack (she wasn't much older than me), I've taken hold of the situation and started rethinking how I live, breathe, eat, walk, talk and think.
Change comes with a price but if it means I can settle some of these massive personal debts, I'm willing to spend a bit to save a lot. A lot being my life.
Stress and all of its associated diseases, kill.
On a strictly financial front, the cost of my being in such a mess is just as impressive. I'm not about to present a firm, sociological dissection of my care, treatment and support but instead, state a few realities and ask some questions about them. I'll start with something basic.
In an unfortunate twist, I take minimal medication because I can't tolerate many of the options available on the NHS. My most recent foray into chemical rejection has left me heart-broken; an anti-inflammatory finally helps me to feel a bit more human but causes undesirable complications, meaning I have to stop taking them and go back to being in constant pain.
I hardly made a dent in the prescription meaning that at least three weeks of pills are now to be returned to the pharmacist and destroyed. What a waste. Although my other meds are basic, they still cost a bundle to have them prescribed and I take them every day. I renew my prescription every three to four weeks out of necessity.
I wonder how much money it takes to fund such a basic set of pills and then how much more is thrown away when left-overs have to be destroyed because they're not suitable for me. How much money could be saved if:
- My doctors made a conscious effort to make sure drugs they prescribe me won't destroy my innards or send me off on a psychotic trip. Okay so they'd have to spend more time getting to know me and reading my notes (doing their job?) but those are short-term chips compared to the long-term mess of dicking around;
- More research was done see which chemical-based treatments actually work.
Every time I go to my GP or to see consultants, they get paid. I don't need to mention the scandals surrounding pay, do I? No? Fabulous.
When I do pay a visit to these people, and it's a regular thing, not a lot happens. There are no real developments, just the same old questions and techniques born from a lack of medical understanding and, I sense, a certain degree of unwillingness to take on board the criteria of another impossible disease.
Cancer used to be impossible. Now it's getting its arse kicked.
Hospital appointments get me thinking about how much time, money and resources would be saved if the doctors I saw went just that little bit further in trying to get to the bottom of my conditions. Late last year, one doctor did just that and I got some results which was fantastic until another doctor shrugged the new findings off as 'marginal' and sent me home in a bubbling pot of misery and pain.
Since then, I've requested a second opinion because I don't believe that dismissive consultant was right to leave me 'as is' and wait for things to develop beyond their criteria of what they clinically believe to be significant. I'm talking about a number here. What they're missing out in their opinions is my quality of life, the test results that all support one another and my roaring family medical history.
If I were a doctor presented with a case identical to the one I, as a patient, am facing now, I would throw the 'criteria book' out of the window and tend to the patient. Not every patient needs the same level of care and that's my point. Averages have turned specialist consultants into glorified GPs who do little more than order blood tests, recommend more drugs and then send you home.
Tests and Treatment
I lost count of how many blood tests I had last year. So far in 2013, I've had a routine check of the standard stuff: cholesterol, vitamin levels, liver function, and a specialised request to check my rheumatoid factor and for any rogue anti-bodies. I have these things checked every four to six months because things need to be observed. I have an illness of some description, after all.
After giving what I imagine to be nearly a pint of blood for such tests in 2012, I started pushing for more proficient investigations and got them. That's how I found out my thyroid gland is doing fine – an excellent thing to eliminate in the game of 'Guess the Mystery Illness'. At the same time, I discovered something that would have remained buried had it not been for my insistence that they check.
When you have a condition that can't be directly diagnosed, you do things in reverse. You make sure all other systems are functioning before sliding into acceptance. It'd be stupid not to but that's what my doctors have so far done with me.
It's only down to meeting an excellent GP who listens, and pushing consultants to their patient etiquette limit, that I've been able to get specific areas of enquiry addressed. How much have these hospitals wasted on pointless tests when they should have been honing in on trace abnormalities?
Yes, it must have cost a fortune to have an isotope scan on my thyroid but it doesn't matter; I have a prolific history of it in my family and to have found no hint of disease in that area is a blessing. A potential candidate for my trashed health has been eliminated and psychologically, I have been lifted from the folds of worry. Debt = settled.
That's only one example of the numerous avenues I'm exploring in order to find out what is going on with me. It could be that I have all of these other tests done and they still find nothing, but I'd rather just do it and know that my heart has no defects or blockages (again, this sort of problem is a good friend of my family. A lover, in fact) and be certain that I'm not walking around with a treatable condition that could be prevented from doing even more harm the older I become.
As for treatment, it's hard to see where to turn when you don't know what's wrong with you, which is why proper investigation is so important and why doctors shouldn't be so dismissive of approaches that fall outside of a fringe department, the ones specifically designed to send people like me to when a doctor's face hits a brick wall e.g. pain management clinics.
I had a physiotherapist declare outright that no amount of massage therapy or acupuncture will help with my lower back problem, or any of my other conditions. I didn't get a say in that announcement which was a shame because had they let me, I would have explained that:
- Previous acupuncture therapy had not only helped my bad back, it had also eased the pain I was experiencing throughout my body and induced positive outcomes with my mental health. My nerves had been soothed, my muscles relaxed and my depression alleviated. It wasn't a cure and it didn't happen overnight (it took around four session until I noticed how well it was working) but it was the best two months of treatment that I had ever experienced. It still is.
- Deep-tissue and muscle massage has been shown to help reduce pain, inflammation and and stress in a variety of illness. It's particularly promising in my own conditions.
I state again that alternatives to drugs and clinics are not cures. What they are however, are a different attitude toward chronic illness. They manage conditions instead if dumping them in the corner until the next appointment comes round. I think that, despite being sniffed at still, these forms of treatment, at the very least, freeze the interest on the growing debt of failed medical care.
I realise that I've given less attention to the personal costs of living with chronic mental and physical health problems. There are some things that I don't want to bring into the light just yet, perhaps because I'm ashamed or because I'm frightened of what they entail. I'm not ready to explore the price tags that are tied to all aspects of my life.
Though I'm inclined to dismiss my inner Drama Llama, I have to acknowledge the creeping dread that this kind of oblivious secrecy produces: not knowing who you are and what little buttons that, when pushed, set you off, is a state of being that all of us should be weary of: ignorance is bliss. So is sleep until carbon monoxide comes into the equation.
If I've decided anything after thinking about all of this, and more, it's that I'm going to make sure that I'm not side-lined any more. Speculation aside, I am living with chronic illnesses and they are preventing from living a fulfilled, purposeful and productive life. They are degrading me both mentally and physically. I may not be dying but I'm not exactly living and life is about living, or so I believe.
I'm going to invest in my future. I'm going to refuse compromise and 'come back in six months' in favour of commitment and 'do your job right'. Professional will baulk at me, some will probably tell me I'm being paranoid, but they're not the ones who have to pay for all of this in the end.
August 14, 2012
Danuta Kean, Mslexia's Guest Editor, has no need for a hammer. Her recent article on how women cope with working, parenting, earning enough to get by and then finding the time to write should be read by anyone who thinks writing is easy but most of all, by those who profit from writers, especially women writers who weild their pens. But something bothers me.
A significant demographic of writers female, male, gender neutral, transient – the lot – are missing. And as a disabled writer, I'm missing too.
Most of my readers know I was diagnosed with Fibromylgia / M.E. / CFS a couple of years back but have lived with it for over four. I'm lucky to have not been confined to a wheelchair like some people who live with the condition, but I have my regular share of days confined to bed because it's too painful to move and exhausting to breathe.
I read Danuta's article, thrust my fist in the air … and then slowly drew it back down as pain ricocheted from my elbow, down my arm to my fingers, and back up to my shoulder and into the blades of my back. The pain touched every bit of my arm on its journey: nerve, muscle, ligament, joint, bone.
If women feel guilty for not coping as well as they should, then I, along with every other writer out there who lives with ill health, feel twice as guilt-ridden. Not all of us can break through and earn our way.
Kudos to those who do storm the path by the way. You're an inspiration.
I haven't written for days because I'm riddled by my condition. How do I cope with that? I don't. I shut everything off and forget about writing and finishing my novel. I would trade a hectic lifestyle and all-nighters for the briefest of feature articles if it meant I could slip in an hour or so of writing, free from pain and sickness. It feels as much of a dream as my novel does.
So I want to know, if you're like me, how do you cope? How do you get through the day with your illness? How do you react to being told not to let it beat you when you feel like a thousand leagues of shit has been beaten from you?
Women writers are pulling it off one way or another and I reckon they deserve proper recognition and space for that, but so do all of the writers out there, published or unpublished – famous or not – who live with long-term physical and mental illness.
At least recognise us.
I want to continue typing after I'm done here but the pain and the tiredness and the effort is too much for me today. Maybe tomorrow it will be better, for all of us.
April 16, 2010
I’ve been thinking over the past few days about anonymity. Very few people are able to exercise this remarkable feat, even if they’re dead.
You could be one of the most unacknowledged people on the planet, and there would still be something on you, somewhere. For example: the never-contacted-before Envira Indians existing near the Peru border in Brazil who were photographed in May 2008. Never heard of them. Never knew they existed. But now there’s something on them.
I often look over the blogs I keep, my email, twitter, Facebook and think: why the hell am I exposing myself like this? I’ve no real desire for recognition, nor do I hold social networking particularly high in regard, but I often have something to say and that’s probably the only reason why I haven’t erased my identity from the internet. As far as is possible to erase.
Note: I wonder what will happen to all of these efforts when I’m dead…
I’ve got a fair bit to say sometimes but I’m aware that not many people take the time to listen and I don’t especially care. It only takes one person to listen and then it’s up to them to decide what to do with the things I’ve said.
I more or less have reasonable control of my presentation and representation in the material I directly publish about myself on the internet but I have virtually no control when having to relinquish my personal details to say, Amazon or my general practitioner.
Amazon pays attention to my browsing history and tempts me with similar items whilst the doctors don’t do much of anything except sit quietly with my details until another body contacts them and requests information. With my consent of course.
And this is where it begins to bug me.
Does consent even mean anything?
I have to fill in a CRB disclosure form, like most people, in order to breathe. I also need to apply for a passport to prove my identity beyond a shadow of a doubt. And it’s not even that now, is it? Not after recent events where it was shown that passports can be successfully made on a fraudulent and sophisticated basis.
I was under the impression that passports were to enable travel and free movement. Now they’re a fallible form of identity.
I have no choice but to give my consent for private information about me to be passed from one party to another. Sure, I can deny this consent but then that suspends my rights.
Perhaps I’m being far too cynical here but I can clearly see that by not disclosing my mental health to a potential employer, the said employer can, if they so wished, release me from my position with relative ease and no obligation to help or support me if I suddenly go off the deep end. I have to tell but I don’t really want to. Why?
Because sometimes, it’s nobody’s damned business.
This is the crux of my irritation. Why do so few have the right to know so much about my private life but I have no right to protect myself from them? Not without sacrificing my civil rights at the same time.
Disclosure isn’t for my own protection. It’s for interested parties to keep tabs on and exploit.