An expensive life

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.

Drugs

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.

Bummer.

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.
  

Appointments

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.

I am.

 

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Wake up

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.

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Creativity for the Agoraphobiac: Gardening

I’ve decided to go with something a bit more challenging for the next part of this series. The last article on knitting was a bit of a ‘get out of jail free’ card for all of us.

So what makes this one so tough? You have to go out. Amidst people.

As with the last post, I’m not going to go into the technicalities of the craft. Trust me, I’m not a guru gardener; I’ve killed (without intention) more plants than I can count.

But the rewards from this activity are numerous and better than, in my totally unprofessional opinion, any group therapy with bells on.

What I’ll be doing, as with the knitting article, is explaining why gardening is so important to me and how it could become a life-saver for you. And the planet.

You don’t have to be an Agoraphobiac or a tree-hugged by the way. Neither do you have to have hectares of land for wild deer to frolic across.

A concrete box, surrounded by brick walls and urban noise can become a haven for shadow loving plants. Dress it up with some outdoor lighting (candles, string lights, solar lamps) and there you have it.

How about a traditional six foot stretch backing onto a railway line? It needn’t be all lawn. Veg and flowers will prosper in the right conditions.

I can hazard a guess that some of you may live in a flat; get hanging out of that window (safely please…) and install a good-sized window box.

The best bit though is that gardening needn’t be restricted to out doors. I have a growing collection of plants that I tend to indoors. Admittedly plants that don’t always need a lot of attention due to my forgetfulness, but plants nonetheless.

This is one of my Phalaenopsis orchids. They grow happily indoors as long as they’re kept out of direct sunlight and watered properly. A bit like me.

You can pick these up at pretty much any supermarket now but I’d recommend heading to a decent garden centre. If there’s a Dobbies close by, I’d recommend them. And no I’m not being paid to say that or getting any freebies. The place is just awesome and worth the effort/terror of stepping out your front door. Which brings me to the pep-talk.

This is not an easy task. By all means, you could order bulbs and seeds from the Internet the same way you could yarn, but I’d like to show that by pushing your boundaries by the slightest amount, you can stop your fears from ruling your life and create a space to be proud of, even if it’s just a flower in a pot on your desk.

Rules. With this task there must be rules.

• Don’t do it alone. Garden centres, particulary at this time of year, are nightmares incarnate. There are people and kids everywhere, all scurrying about and cramping up the joint so the last thing you want is to be in that situation on your own. Take a trusted friend of family member. I go with my Dad.
• Make a trip out of it. Looking for plants and materials like soil, wood, feed and chippings (to help prevent soil dehydration) isn’t a death sentence; it’s a chance for you to take control and find pleasure in a new habit. One of my favourite things to do when I go with my Dad to Dobbies is to seek out lavender or other rich-smelling plants, bury my face in them and take as many deep breaths as I can before he says that people are staring.
• Plan ahead. I can’t stress this enough because of the stress. Don’t go on a whim and don’t go when you’re stone broke. You need good health, a good frame of mind and a good bank balance if you’re going to do this. Planning also allows you to think about what to do in the event that you start to feel uncomfortable or freak-out. Neglecting planning will lead to a negative experience which means you’re less likely to do it again.

So why gardening? What makes it indispensable to me? I’ve grown up in and around greenery, trees and flowers. These places were a haven of peace and solitude for me, just what I needed when I felt the need to escape coming on. The sanctauray of the garden is more important for me now than it ever has been.

Gardens come with two sides to them, forming a paradox. They force me to go out and be social but then they draw me in and shut me off from the rest of the world.

When I’m done with the hustle of the over-populated garden centre, I return home and rest for a while. Maybe a day or two. Then I turn my attention to the plants themselves; I plan how and where I’m going to put them, prepare the soil so that their roots have a good place to start their new life. I ready the watering can with warm water. Yes – warm water. It’s better for the plant, particularly seedlings, as it’s not as shocking as cold water. You wouldn’t jump into a freezing shower, would you?

When everything is ready, I tease the plants from their plastic containers and loosen their roots. This is beneficial for the both of us.

Loosening roots, particularly if there are masses of them, gives the plant space to breathe in its new home whilst allowing me to subconsciously untangle any stress that’s under my skin.

Contact with soil makes us happy. Check out that link and see what it says about the benefits of getting your hands dirty in the garden,

It’s not the only source which plugs (if you’re already a keen, green-fingered fool, you’ll get that joke) the benefits of creating and maintaining green spaces. Go ahead and google ‘benefits of gardening’ and you’ll be inundated with thousands of results which all say pretty much the same thing: gardening is good for you.

It helps lift depression, gives your body a work-out and releases stress.

It doesn’t matter how much you do in my mind. I recently planted a blue daisy-like plant called ‘Felicia’ in some old pots I found in the churned mud of the riverside where I live.

The plant was split into three to accomodate the size of the pots and to leave part of it to place in one of the boxes outside. Not bad for £1.25.

I’m at my happiest when I’m around plants. I can be the biggest ball of stress going and all it will take is fifteen minutes with some soil and some seeds to transform me into a different person. A calmer person, a softer being.

You can be as committed as you want to this activity; visit the garden centre once a month, twice a year if you like. Have as few or as many plants, trees, flowers, vegetables, fruits as you like but keep in mind that they will need your attention and care.

I’m deciding whether or not to grow tomatoes and cucumber again this year because I have already have a fair bit on the go: herbs, carrots, beetroot. At the moment, I’m not sure I could manage any more along with my non-eating plants. Gardening is as much about responsibility as it is pleasure. You have to take care of yourself and your green friends or both of you will suffer if you go over the top.

Speaking of responsibility, it’s down to us to do something about the problems that our only home in the entire universe, faces.

Creating green spaces with bee and butterfly friendly flowers is one of the easiest and happiest ways to do this. Imagine if everyone gardened, everywhere, anywhere. What would our world look like? How would people feel with soil under their fingers?

Now, enough of my hippy dreams. You need resources! I haven’t given you much in the way of gardening tips but I can show you where to find some.

Alys Fowler has to be my favourite gardener because she practices something called permaculture: the art of throwing out formalities and inviting in a smorgasbord of sustainable methods of planting that encourages a self-sustaining Eco-system.

Her books aren’t just how-to guides; they’re a collection on independence, filled with ideas on how to recycle bits of scrap, go skip-diving for materials (without upsetting anyone), how to use the world around you to nurture your garden, and what to do with the things you grow: jams, cakes, soups, pickles. Yum.

You can breathe a sigh of relief because you don’t have to go to a bookstore to get them, or any other book on gardening, unless you want to of course. I recommend taking a look on, wait for it, eBay and AbeBooks not just for Alys Fowler but pretty much any gardening book. I have several volumes that I’ve found over the Internet that are no longer in print but offer some timeless and excellent advice on how best to tend to your plants, what pests and diseases to watch for and how to treat them, and also design advice if you’re looking for a particular theme.

You can also order plants online if you’re not feeling ready for the garden centre just yet, but you can also find particular plants that you may not be able to get so easily, like my Witch Hazel on the left.

I got this from an online stockists last year for £15 which is a bargain considering it was out of season and the same plant would have probably cost twice as much at a specialist centre. Plus I didn’t have to go out.

What arrived a week later from Holland was a stick in a box. I soaked the roots, talked to it as I prepared its pot. Yes, I spoke to a stick. Talking to plants is very therapeutic for speaker and plant alike; the plant listens and the speaker gives carbon dioxide in return. If you believe in that of course.

The Witch Hazel was planted in mid October and remained ‘dead’. I watered it, spoke to it, even gave it warm herbal tea. It broke my heart a bit. Then in January, it blossomed. Bright red flowers sprouted all over the stick, lasted through until March and then died off. I thought I’d killed it until the leaves came.

This might seem a bit of an irrelevant anecdote, but it all adds to my belief that gardening is one of the best things an Agoraphobiac can do. When people aren’t your cup of tea, plants can be.

They’re beautiful, good for you and the planet, and prevent the growing isolation caused by The Fear. It prevents it because every time you look at you garden, your chilli plant on the kitchen side, your rock garden trying to establish itself, you’re looking at one of your biggest achievements: creation brought about by attention, dedication and love.

And this is what folk who are scared of the big wide world need themselves, right?

If you’re one for Karma, sending out the goodness you need will bring it back to you. Gardening is a great thing and can be done anywhere. You never know, you might even grow a few human friendships at the same time.

Just a quick note: All of the photos featured in this blog have been captured by yours truly. Apt considering I’ll be exploring photography next time.

If you use any of my photos in your own blog or link to them, I’d really appreciate it if you stated that they’re my work. Thanks very much!

The right thing

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.

“Hello, Samaritans.”

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.

 

It doesn’t take much.

No wonder people wipe their feet on us. Manners? Please. Sensibility? Indeed. The bottle to follow through on a decision? Oh wait… that one’s a bit too much.

It happens. That weird occasion when predictability goes against our expectations in such a violent manner that it fulfils the things that we were hell bent on wishing it to do. Basically, predictable surprises us by being … predictable.

The thing that might leave you wondering (or worrying if you’re that way inclined) is whether this predictability was drawn into existence by the collective will; the unquenchable desire to master everything even when it’s clear that our control is just an illusion, something to make us feel secure in light of the devastating obviousness that we have little control over anything. We foresee and we remain adamant; we invent and our monster devours us.

So what do we do in the shadow of our vision? We shit ourselves.

I have boots and a good number of layers to wear, a hat and headphones, gloves and whatever else I need. I have stamina and a good tolerance to the cold. I have a thermos. I have dedication, determination. I’ll take a shovel if I have to.

We predict snow and we shut down; the desperation to control cripples us.

It’s … just … snow…