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.
November 6, 2012
I've been in two minds about writing this post. It's something I want to say but not in order to moan and berate. I'm going to say it because it means a lot to me, because I want to reverse it.
I'm socially isolated.
I rarely get to physically see my friends or my family because they live a long way from me and have pretty busy lives. I don't get to go out and build a social life because I have medical conditions which prevent me from living a full life, safely.
I have no control over those things. I can try to bridge the gaps where possible but I can't click my fingers and bring everyone I love into the same space, free up a few hours a week so I can see them, and then magically cure my conditions so that I can lead a socially active life.
Sorry if you're reading this and happen to be a great optimist, but the above scenario, where I alone make everything perfect, is unrealistic. I'm not a defeatist by any means. I'm just in touch with what's possible given my circumstances.
So I'm unable to make regular physical contact with those I love. The solution is social media, right? Kind of yes, kind of no.
Twitter, Facebook, Tumblr, WordPress and any other social platform you can think of, are all brilliant tools. I use the first four regularly, connecting with people not just in my close social circle but also with other people across the world that I have never met. You're probably one of those very people, reading this now. Hi! How are you? Thanks for reading.
But social media, for me, falls short. Why?
It goes back to the people I'm closest to having busy lives. I wouldn't deny them that, though I would appreciate being spared a thought. Sometimes I go off radar and whilst I'm absent, I rarely get a message asking where I am and how I'm doing. It may not be the case but it often feels like nobody has noticed I'm not there.
That is isolating.
I try my utmost to keep in touch with friends each week when I'm able to. It's at least once a week, even if it's a quick comment on a Facebook update. It shows that I'm keeping track of my friend's movements and paying attention to their thoughts. When I'm not having a rough time with my health, I go all out and write an email or even better, I go Old Skool and write a letter. I'll also pick up the phone and call my sister, or arrange a Skype/phone call with a friend.
This is how I connect with people 90% of the time because I'm unable to do it physically. Even with my alternatives, I'm limited by my conditions. Talking for an hour on the phone is knackering, for example.
So what am I asking? For people to connect with me more often. I don't want to be socially isolated, even though social situations make me anxious, and I think this is pretty obvious in how I communicate with my family and friends, and how I blog openly and honestly. I reach out.
Please reach back.
And it's not just me. We're on the crux of the loneliest time of the year: Christmas.
The 2012 festive season will be an empty and miserable time for many people – those with no home, children with no parents, the elderly, the estranged, individuals who have lost their families. Last year, I made a donation to The Salvation Army so that someone would have the company, care and attention that they deserve. And even though my finances are tight, I will be doing it again.
It doesn't take a great deal to keep in touch with someone. A few minutes out of the day to send a message. Arrange a phone call. Write back. Doing one of those things for me will make the difference between a week where I start to believe that I'm the most insignificant person on earth, making my depression worse, and a week where I think
I am not forgotten. My friends still think of me even though I can't do the normal thing and go out for socials with them. My friends acknowledge and respect that I live with a complex tapestry of illnesses.
Props to those of you who who do tweet and message me. Extra credit for reading my thoughts! You help me feel so much better and a lot less isolated.
Photo courtesy of takethea
July 20, 2012
My last two posts have been gloomy. Life is hard to live sometimes and I often question why that is and whether I'd have better luck in a different life.
I had a terrible time during my yoga class today. I couldn't focus and I ended up crying through most of it because I was convinced I needed to get out, escape. Run away and not come back. But it wasn't the yoga I was running from. It was me.
So I come home and eat junk instead of taking care of myself and intermittently weep when I get that urge to run again. And then I find that a post I wrote for Tiny Buddha a few weeks back, when it was sunny and I was getting burnt, has been published on the site, and people have responded really well to it. There's a lot of gratitude going on.
I cry again but with sobs this time. Feeling so crushed and then being propped up by complete strangers is the ultimate in vulnerability and has helped restore some of my emotional strength.
If you're one of the kind folk who commented and are reading this now, you made a real difference to my day. I'm so grateful.
I don't know how long I'll be in this state for. It could end tomorrow or next week. It could end when Autumn hits because I'm generally happier when the nights are longer. I don't think it matters in the end. I'll carry on living and feeling whatever I feel.
July 17, 2012
Nothing excites me anymore, at least nothing I can call to mind. All the things I used to revel in and look forward to have turned to drudgery and boredom.
Three weeks of depression and I'm ready to throw the whole damn lot in the river and then follow it.
June 24, 2012
I don't know why they call it a Black Dog. Isn't depression enough of a cliché without giving it a mysterious name to hug?
Dysphoria. Name the damn thing as it is. I am dysphoric; trapped in a room whose pleasures are too many, stuck on a boat that I want to be rid of, rooted in a town that holds nothing for me.
Fixed in a body which isn't mine.
Self-indulgent tripe; the rain is tapping on the hull and all I want is to smash everything because it is self-indulgent. I'll even smash myself, given the chance.
Books, pointless. Films, engrained. Writing, stale. All these things are nothing compared to wanting to tear off this skin, this life and put it in the bin. Not even they recycling bin – just the bin so it can go to a landfill and rot, or a furnace and burn.
There's an insect in my room.
June 9, 2012
By the time you read this, it will be close to 5.30 a.m. On June 9, 2012, as I write it.
I’ve slept badly. I fell into dreams without realising and awoke at 2.30 with a sadness in me, so black and terrified.
I didn’t want to wake my sleeping family so I called the Samaritans. I wasn’t sure if they’d pick up. It rang for a bit but then a man with a voice as gentle and soothing as gravel popping under the slowing of car tyres, came through the phone.
I’m never sure of what to say. I shudder out the first words all the time, usually something like “Do you mind talking for a bit?” or “I need to get something off my chest”, if I’m feeling desperate.
I decided to say “Good Morning”this time. It seemed apt.
They always listen.
Always kind. Always patient.
I talk for an hour, sometimes less, sometimes a lot more depending on the state I’m in. I went 8 minutes over the ‘talk free for an hour’ allowance, meaning I’ll be charged for the whole call, plus those 8 special minutes. And I don’t care.
Without the Samaritans, I’d be nowhere. I’d be nothing. I’d be in tears, hysterical and too frightened to tell the truth about what’s going on inside of me. I’d be waiting for ever, like I am now, to talk to someone about it.
Waiting for a therapy referral to come through is waiting for a cure.
Not a cure for my mental health problems but a cure for my loneliness, my sadness.
The Samaritans are my cure.
And so I’ve done what is right. I never have a lot of money spare because I have debts and bills to pay and a manic person inside of me who is obsessed with books, vinyl, iPad apps, and mysterious objects.
But I have made space for £3 a month to support a charity who gets at least one phone call from me every week.
That £3 will join the £3 that goes to the WDCS which helps protect whales and dolphins across the world, and £3 to the RSPB which helps protect our country’s bird life and environment.
The £3 to the Samaritans is to thank them for everything they do and, I realise, it’s there to help them continue to protect me. And when I say ‘me’ I don’t just mean myself; I mean all of the people who call up in the wee hours, any hour, needing a kind stranger to help them through a rough patch.
The volunteers don’t get paid.
My Samaritan in these early hours was called Paddy and he was just what I needed. I said he should be paid for his good work. He said knowing that he helps people like me to continue living life is payment enough.
If you see a Samaritan fundraiser, don’t run from them because you run from me and you run from yourself. Give spare change, make a Gift donation, set up a regular donation even if it’s small like mine. It keeps the call centres open.
Become a volunteer.
I’m not usually this honest on my blog, even though I’m honest about my mental health; without the Samaritans, I’m not sure I’d be writing this. I think I’d be in hospital.
I’m going back to sleep. I still feel unsettled but because of Paddy, I feel less alone.
March 29, 2012
I have a white bar stool, rustic in style, and a bit rickety, which I picked up for free outside someone’s bungalow. I was on the way home from an appointment and as soon as I saw it, I knew it was meant to come home with me.
It sits beside my bed, acting as a seat when I’m contemplating my writing board, and as a small desk for me to sit at whilst perched on the edge of my bed as I type my novel. A space perfectly positioned in front of the writing board, my back to all electronic temptations, and the lure of books for research in the peripherals of my vision.
I’m thinking of fixing a board on the foot rests so I can place a beverage on it.
Why the importance of a stool? It’s one of the few things keeping me real at the moment, in the excellent company of the guttural night-stock scented Welsh of Cerys Matthews and the soft, bobbled warmth of one of my favourite jumpers.
A sort of silence, a familiarity as I come to terms with my lowest ebb in months. No use in fighting it because that leads to violence. Sink into it and find that place which lets you ply your craft in peace amidst the strange comforts of insignificant items; stools, bare feet, lullabies, layered clothing, lack of appetite.
But still an absurd yet pleasurable thrill to go on because of these things.
January 13, 2011
Two within a week. Who’d have thought.
The truth is I’m feeling dismal and the novel is starting to absorb all of that truth; it’s starting to breathe.
Updates to the week:
I did something on the list. I gutted part of my room. I would have done it all but I exhausted myself and for anyone who knows what it’s like to live with chronic fatigue/pain, overdoing it is a risk. It was worth it however because I threw out multiple trinkets from a dead past, and I burnt years of notes, diaries and writings. I’ve never experienced something that silent and cathartic before. I’d say crying comes close but that isn’t exactly silent, especially when I sob
I’m pleased I did it because now the room looks and feels airy, neat and reflective; organic. I also got round to stealing that gorgeous wooden table that had been used as a platform to cut wood on. It’s stout and heavy, obviously hand-made, and it has a couple of nicks and hack-marks but they’re charming. The wood is a mix of faded brown and gull-grey. I fell in love as soon as I saw it hauled onto the deck, a freebie from a neighbour, though I forget who. It sits, warm and steady beside my bed, and the room is finally light (although I have other areas to clean out, mainly the wardrobe, but they’re not important right now).
I’ve been wanting to take up yoga for a while but have lacked the confidence, money and stamina to join a group at the gyms in the area (to my disgust earlier this year, I discovered my local leisure centre had axed yoga from its timetable). To my delight, the Chronic Fatigue Clinic gave me a leaflet about a small group held twenty minutes from where I live which was not only accessible and cheaper than a gym but was also run by a teacher who is trained in teaching yoga for people living with M.E. / Chronic Fatigue / Fibromyalgia.
I took a risk and went along. An hour later I’d done very soothing, flowing postures and a bit of chanting, and I felt so relaxed that my smile came naturally, without incentive for once. No persuasions, no materialism, no promises or bribes. This one came from just being calm and happy. I don’t have to say I’ll be going again next week, do I?
I’ll be going next week.
I used to second-guess myself because of uncertainty and a lack of confidence, but recently I’ve been doing it because I’ve been thinking of different possibilities. Something clicked in the past eighteen hours (give or take) that’s made me readjust my perspective on the things I thought to be real. This wouldn’t be such a huge thing if it hadn’t happened last week or the week before that (it’s been happening for a while actually, I’ve merely been ignoring it), and I’d think little of it if last night’s eye-opener hadn’t got personal and exposed the soft, delicate bits inside to its starkness.
To be a little less cryptic, I’m wondering if pursuing a PhD has more to do with my desire for a systematic life and a shot a job (I’d be obliged to teach if I got department funding – they’d have to give me work) than my desire to have another notch on my Epic Belt of Education +5. I gave up worshipping the value of education when I realised my BSc accounted for little more than oh say, nothing, and that the paper my now defunct name is printed on is worth, wait for it, nothing.
So why the PhD? I wanted to get close to people. I know, I know; I’m full of contradictions. It’s hard to know you’re any good when other people aren’t there to remind you; this is also an absurd contradiction because I never believe them, barely care, and am more content to satisfy myself with my flat, salty focaccia bread than anyone else who’s more interested in making it perfect to create cultural, monetary and mostly unseen profits (because ‘profit’ is a concept, not a tangible thing; can you imagine having your profit in clementines? I’d be blissed-out on account of my clementine addiction).
I’ll encounter my dreams soon. PhD or not.
I leapt off the cliff and plummeted straight down onto the rocks with a thud and felt ecstatic when I opened my eyes and saw that I was sitting on the shore, cradled by a deserted cove and the sea. I thought I’d died before I’d hit the bottom but it appears I simply woke up to the idea of making this novel my novel and not a book of suggestions made by others. I’m still trying to figure out my message but like any good story, it takes time.
Things are making more sense and I understand now, that I can create the worlds/lives/people I want and send them off into the atmosphere where they’ll exist on without me. It’s like having kids I think: you spend a lot of time and money on them and even before that there’s the sex and the growth and then the birth. Never thought I’d use a metaphor like that in my lifetime. I’m becoming more domesticated and I blame the novel. But the novel is opening me up and holding a mirror, saying you’re writing me and you’ve always written what you want; I’m your dreams, so write me and free me and then you’ll have me.
The dissatisfaction I was experiencing a few days ago hasn’t gone but its real cause has finally shown up now that I’ve lifted the novel off its head. Have you noticed how everything is spectacle? Aristotle says that spectacle is a shitty way to develop a plot. I’m not saying life is a script in any inherent way but that we’re making it like that. And we’re doing a rubbish job of it. This is a brief observation on my part, but everything looks like it’s being slotted into categories:
- Insurance (car, home, life)
- War (flu epidemics, hay-fever, self)
- Appearance (fashion, beauty)
- Cars (that we don’t need)
- Money (quick loans, banks, credit rating)
- Price crunches and sales
And everything is spectacle; if it doesn’t dazzle and shine, or isn’t near-naked, it’s worthless. I wonder what the world would look like if it washed its face, put some clothes on and sat down for an honest conversation.
I’m shocked that I’ve written this much, but then I did promise. I’ll need to look over the list from Jan 2nd again and refresh my memory. I’m sure scrap-booking was in there and this is probably what I’ll do next, seeing as I’ve found a bunch of leaves I pressed last autumn, along with a wealth of postcards I’ve collected over the years.