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.
January 8, 2011
We all knew it’d happen. I’m still trying to figure out the link between ‘loss-of-interest’ and ‘forgetting’ but let’s not make this too complicated because it can’t be any simpler than this: I almost screwed up on my ‘one new post a week’ promise I made at the start of the year. I think I’m in time to catch the last moments of a week, aren’t I?
What matters is that I’m here now. Actually what matters is that I have something to say, should have something to say, and I think I do. Something about being dissatisfied with what I’m doing at the moment, that is, trying to write the first chapter of this novel. Again.
I changed a bunch of things; I’ve figured out some decent imagery instead of groping at bored clichés and hoping they’d work for me, and I’ve started the process of letting my main character be herself (which is in part me but tenfold) and call the shots when it comes to her own details.
The plot has changed again but has simplified which I’m pleased about because it was all getting out-of-hand and becoming a farce rather than a genuine exploration of an existence that in part seems alien to me but one that I wish would cave in on itself so that I can experience it fully and then find a way out of. Because escape is so much easier to practice when there are gaping holes.
Things are working out in a haphazard way and I’m guessing that this is okay as long as I produce something (which I am) so why the dissatisfaction? I’m going over the same old stuff again and again, trying to reshape it when I’m close to scrapping the whole lot and starting again. I hear this is common practice but I’m whining about it because
- I don’t have the luxury of time; this needs to be completed soon or I fail the module
- I’m getting restless; I want to move on and explore other chapters
- Everything I’m writing is hollow; the inner critic is trashing everything I do and this isn’t helped by the fact that I keep reading exquisite novels by published authors including Bret Easton-Ellis (Lunar Park), Scarlett Thomas (PopCo), and Amy Sackville (The Still Point), my most recent expedition into the land of ‘They’re So Much Better Than Me’.
- I’m discovering huge gaps in my knowledge and worse, my memory. There’s a residue of all the things I should know and a bunch of faint memories where I was learning these things but apart from the occasional scrap of detail that arrives as an epiphany, there’s not much going on upstairs. I learn and then forget.
The real plus out of all this is that my notebook for the project is intense and detailed. I can trace (hehe) how everything has been changing from those weird seed moments right to trying to figure out the formation of a family tree where fathers and mothers are really aunts and uncles.
I think I’ll take a risk today and begin the novel again. I’ll aim to reach 5,000 words by 6pm. I can only gain. Even if I don’t use it as the opener, I’ll have plenty of new material to work and adjust the original chapter with.
But first, lunch.
Until next week (if I remember).
The things we think are important in life are illusions, distractions from the voice that says “slow down, please slow the hell down” – and we ignore it. We fake it, wear a mask and all is fabulous.
I keep telling myself that this is what I always wanted, and it is, but it’s not what I can manage. I can tell I’m doing too much because I have to concentrate to relax my shoulders and I’m finding it harder to sleep, even though I’m so tired.
You’re pushing too hard, slow down.
But what if all of this slips away? What if I wake up tomorrow and I’m back in that place again – god I have to go there tomorrow and I’m not sure what day it is today, neither am I convinced that it’s the day people said it is. What do I do?
You slow down. Things won’t vanish because you put your feet up for a bit.
I have so much to do; it’s my fault it’s all piled up because only half of me is dedicated at the moment and I keep forgetting everything. I’m beginning to question myself more and more. Something happened somewhere along the line and I’m not sure if I can recognise it.
Take a break, find some trees. First organise what you can do, work systematically and then let it go. You will remember the things you’ve forgotten. Slow down.
But what if I…
What if I slow down? Maybe my heart will beat steadily; maybe my dreams will be lighter; maybe my feelings won’t screw themselves up; maybe I’ll smile.
August 12, 2009
I shouldn’t be given the responsibility of making decisions. Not because I can’t make a good one but because I often start to wonder if I’ve made the right one.
There are a myriad of possibilities when it comes to making decisions, so I don’t believe that there is such a thing as a ‘wrong decision’, just bad ones. Or silly ones. Risky?
You can tell when you’re starting to question your judgement because you obviously make your choice, time passes a little and then the memory of it might surface through conversation with a friend or through random synapses firing; you get that sudden tug in your stomach, similar to the one you get before you’re sick, followed by the feeling that you’re missing out on something.
I’ve made some hefty decisions in the past year and most have died out already. Except one: postponing my studies. And I’m reminded of it at least twice a week where I find myself worrying that I was a bit hasty, if choosing this path will mean that I end up in an undesirable position next year, if I’ll even be interested in going back or indeed if it’ll even be worthwhile.
There are pros and cons; if I go back next year I’ll be able to finish the qualification, maybe get my life back a little, spend some time with a friend, get out of the house, engage in academics again but it also means that I could end up finding that I’ve wasted my time (after finding that I didn’t get much from the first year) and about£2000.
If I don’t return, I get that money back. Yum. I’ve potentially not wasted my time, I don’t have to worry about being unwell at any point, struggling with work or travel, feeling ostracised etc. but it also means I would have dropped out of an MA course. I don’t like that part. And I could actually be missing out on something big.
I could be stressed out and tired all over again in September (by returning early) or I could spend my year out worrying myself sick.
Money or opportunity? In all likelihood, both are bound to lead to disappointment sooner or later.
February 12, 2009
It must be nice up there. I hear the view is quite magnificent and that you have sunshine and a breeze in your hair. It must be nice, living above the poverty line and not having to worry about what you’re going to eat next week because all you can really afford is bread, milk and eggs.
You’re worried about eviction? Oh don’t worry about that, some of us have been juggling that one for a while. It’s old news, losing your home. But I guess you should be a little concerned about where you’ll end up if it does happen…
If you ever do end up down here, below the poverty line, try not to think about the material loss because that just adds to the pain of knowing that you’ve worked so hard to get where you are and now because you’re living with a £30 a week deficit, you can’t afford to put yourself out there. That’s the hard bit, being unable to get yourself noticed. Not only are your clothes a bit washed-out, making job interviews sketchy, people generally tend to forget about you. Mainly the people who allocate you life. Oh you don’t know them? I can help you there.
Hard times put a strain on everyone, but down here, it gets a little worse (things aren’t great anyway) because for some reason or another the people who designate you the ability to live, and this is the ability to eat, be warm, have a home with water – not the ability to go out and party it up on a budget of £120 a night five times a week – these people can’t seem to add. Or read. Or understand. And then they have a go at you for it. They’ll tell you to cut your expenditure, get a job or something. And if for some reason you’re not fit to do any of that, they’ll still chip you away. They’re nice like that.
You can try appealing but it’s a lengthy process and you’re not getting any richer. The landlord is understanding in a way, but they will eventually evict you. Oh right, you own your own home. That means you’ll just be repossessed and… hold on a sec. You have social standing? Why are you even talking to me?
Welcome to the poverty trap. Not that you will ever experience it. The only hardship you’ll ever experience in the next few years is not getting that £50,000 bonus. Now. Any chance you could spare a couple of quid? I could do with a warm drink… Yeh, I know I’m not homeless (yet) but y’know, it’s hard down here!
Ugh, y’know what? Just leave.
We can all feel the pinch, but it’s starting to cut off my blood supply.
July 19, 2007
Today I hoped that I’d be able to get my wage slip from work. To my utter horror (and nagging paranoia about the flimsy slip sitting in it’s metal box with all the other flimsy slips in the cash office), I discovered that the wage slips hadn’t been delivered.
This one small hiccup in my day has brought about a rather delicious dose of insomnia. And the opportunity to get a few things off my chest…
Facebook. We all love it. I find myself loving it. Its something to waste my time on when I know I should be wasting it on something else. Like staring at the dust on my monitor and thinking ‘I should clean that’.
I can cope with the obsessive need to update my ‘virtual’ status as soon as my actual status changes, even if I do have to be psychotically third person to do so. I can cope with the need to see the state my friends are in, and spy on their ‘wall-to-wall’ just so that I can understand their conversation, half plastered across the screen in disjointed blurbs that tease with a very sexy ‘…’ when they’ve gone on for too long.
That I can deal with.
Friends requests. I’ve had a few now (amazingly), most of which I’ve accepted because I obviously like them. But don’t you feel dirty when you click ‘Ignore’?
I feel repulsive. And for good reason.
I click ‘Ignore’ because I don’t want to know them. Now, or ever. So why do they then ask again? There is one very effective way Facebook could remedy this.
Invent a ‘Sod off’ button.
I’m still thinking about that wage slip…