I’m so nervous, I just sit and smile

.Last night, S and I met at the pub. I planned to get a bus to further my amazing recovery, but managed to miss it by a minute, so yet again I ended up talking to a taxi driver and feeling frustrated. I’m truly beginning to loathe taxis. I miss the independence of being able to step onto a bus without freaking out, and able to stand at a bus stop and make idle chit-chat without wanting to die on the spot. I don’t know why buses became such an issue; they certainly never used to be. I’ve taken thousands of buses in my life, and it’s only in the past two years or so that I’ve become fearful of them. I feel hemmed-in and restricted by the seats, and I worry that everybody is staring at me. Stepping onto a bus seems to take enormous courage; which is silly. I’ve forced myself to just do it anyway lately, and I’ve actually enjoyed the experience once I’ve dealt with the panic; I like people-watching, and buses are ideal places to do that.

S held me all night. Refused to let me go. We drank wine and ate Chinese takeaway. Watched The Secret Life of Machines and had mind-blowing sex. Fell asleep for an hour with our noses touching.

I woke up at 8am today, and promptly fell out of bed thanks to an entirely numb leg. When I stood, I noticed that the upper back pain has returned and my neck is stiffening again. I’m down to two steroids a day now (from five) so I can only assume that the dose is now too low to kill the pain. Dragged my leg around for most of the day and was very tempted to sit down in the middle of town and fall asleep. It’s amazing how quickly you forget how it feels to be in pain 24 hours a day. You forget just how soul-destroying it is. I’m out of weed too, so that’s more reasons for the pains to return. Part of me is so tempted to turn back to codeine, but I know that would be such a bad move. I know it’d be the worst thing I could do right now. I’ve just broken the habit – literally only just broken it – and I don’t want to go back there. I gave it up by accident; and I need to appreciate that blessing.

All the money I don’t have?

I spent it on jewellery today. Whoops.

 

Still Ill – a lifetime of chronic unexplained illness

I decree today that life
Is simply taking and not giving
England is mine – it owes me a living
But ask me why, and I’ll spit in your eye
Oh, ask me why, and I’ll spit in your eye
But we cannot cling to the old dreams anymore
No, we cannot cling to those dreams

Does the body rule the mind
Or does the mind rule the body ?
I don´t know….

Under the iron bridge we kissed
And although I ended up with sore lips
It just wasn’t like the old days anymore
No, it wasn’t like those days
Am I still ill ?
Oh …
Am I still ill ?
Oh …

- Still Ill, The Smiths

Here’s how it works.

You are born two weeks before Christmas, in an infirmary they knocked down a few years ago. The last of four children (the ‘mistake’), you’re born pretty healthy. A normal weight, lots of bright orange hair and a loud cry. A very loud cry, in fact. A cry which didn’t stop for weeks on end, stretching into months.

The doctors work out you have an allergy to dairy products. Not an intolerance; a life-threatening allergy. You are taken off baby milk and put on soya, and the crying stops. Then comes eczema, covering your whole body from head to toe. Years of bandages and E45 cream and scratching.

The illness kept on coming.

Living with chronic illness is one thing. Living with an unexplained chronic illness is something else entirely. Although I have a diagnosis of fibromyalgia, I’m not 100% certain I still accept that fibro is causing all my symptoms. I’m not convinced I actually have fibro. When I was diagnosed, it was a relief because I finally had an explanation for all the fatigue and strange pains, but recent worsening of some symptoms and arrivals of new ones have made me wonder if perhaps I’m experiencing something else. Something which could maybe be treated, or which at least has a definite cause.

Fibromyalgia explains the muscle pains and twinges, but not the joint aches and trapped nerves. It doesn’t explain loss of bladder function or an entirely numb right leg. What if there’s a medical reason for all this, something which could explain the constant kidney and water infections? The cervical infections? The cold-sores? If there’s a name for it, I want to know it. I want to grab that name and fight whatever the hell this is, armed with knowledge about it.

But, for now, I simply don’t know what’s happening anymore. I can’t fight an unknown enemy.

My daily routine during the week goes like this:

Wake up between 11am and 3pm, usually by being shouted at by my mother to “get up and sort my life out”

Light a cigarette or spliff, depending on availability of either. My mother brings me a cup of tea with loads of sugar; I don’t have the heart to keep telling her I don’t take sugar now.

On  good day, I get dressed and washed. Bad day; it’s pyjamas and unbrushed teeth.

Choice of distractions mostly include: reading, wasting time in the deepest recesses of the internet, Bejewelled, The Sims, or a film. On a good day that list will also include knitting. On a bad day, it’s pretty much narrowed down to lying in bed with my laptop, surrounded by empty cans of Pepsi used for ashtrays and empty tea cups.

I never wanted to go down the good day/bad day route. I (perhaps foolhardily) believed that giving in to the concept of having healthy and unwell days was akin to becoming a slave to the illness, and I refused to go there. I never wanted to be the bed-bound invalid which I inevitably became.

Sometimes, it seems like a pointless existence.

I envy those with positive attitudes. Jealousy is an ugly emotion and I’ve never felt comfortable around it, but I truly do feel a touch of the green-eyed monster when I hear of people coping. The concept seems so alien. It’s not that I’ve never tried to cope – I tried my hardest for years – but I feel battered down and jaded by so many hospitals and tests, and I never did learn how to deal with it all. I’ve never been very good at coping; with anything. It’s my biggest downfall.

Two strong parts of my personality have a particular problem with my symptoms: my hatred of sympathy and pity, and my hatred of being accused of lying. Both affect me deeply, and you can’t avoid either when you’re always ill. Sympathy comes in waves, crashing on me and exiting again; utterly meaningless. There’s a difference between genuine concern (which I appreciate) and the all-too-convenient “oh, I hope you feel better soon” so many people mutter in my direction, before hastily cutting off contact with me. I won’t feel better soon, that’s why it’s a chronic illness.

Then there are the disbelievers. The ones who look at me slyly and say, “hmm, you had a cold last month”. The ones who turn their eyes to the heavens when I cough or sneeze. The doctors who look at me like I’m a particularly grotesque lump of dog poo on their shoe when I say the medication isn’t working or that I’ve been vomiting or been unable to move my neck for days. The keyboard warriors on forums who accuse me outright of fiddling benefits (it’s happened). My mother’s disparaging remarks about my “laziness”.

Along with this comes the fear of losing help from the government. In my emotionally confident times, I can convince myself that it wouldn’t be the end of the world, but the reality is it would be. I have a prescription pre-payment card, I have over-the-counter medications to buy, taxis for transport because I’m in no way able to deal with public transport right now, appointment after appointment.. how would I pay for these things? I’d have to get a job.

You possibly have a job. Most people still do, despite the news stories claiming that everybody is cheating the system. The UK would have you believe we’re all workshy spongers, buying 50″ LCD televisions to watch Jeremy Kyle on with our free money, going on holiday somewhere tacky and sitting around being lazy all day. The media paints an unrealistic picture of life on government handouts, making out that it’s a utopia.

The reality isn’t quite so sweet.

Sit still long enough and you’ll atrophy, emotionally and physically. You’ll lose all will to motivate yourself out of the situation and eventually you will accept nothing will ever change. You feel like the lowest of the low – a deplored member of a so-called broken society – and life becomes a fog of bad horror movies, cheap books, sleeping to pass the time and a constant sickening feeling for something more. Something other than a pseudo-existence.

Something else I envy (I really have to deal with the jealousy problem) is people who go to work every day and  who are able to do their job. I feel like I’ve been cheated somehow; that a vital part of being human has been taken away from me. Being a valued member of society doesn’t involve being stuck in bed for half the week or rearranging your music collection to waste a few hours.

You see; I’m ashamed. I can’t shake the feeling of inadequecy that being long-term unemployed brings. I feel like I’m somehow letting  the side down and wasting my life away while other people do their bit. It’s not a nice feeling – sometimes it pulls me apart – and as much as I try, I can’t see the positive in sitting at home all day while life carries on around me.

I will never forgive myself for leaving the bookshop. I had a job; even if it was voluntary. I know things weren’t working out and life with J was destroying me, but I should have held on. I had a purpose, and something to tell people when they asked what I did. For the only time in my life, I felt like I was contributing to normal society. It’s no small thing to suddenly find a niche were before there was only dull, empty space, and I miss those times dearly.

In my lifetime, I have amassed these diagnoses:

Dairy allergy/intolerance

Gluten, wheat, citrus and sugar intolerance

Clinical depression

Fibromyalgia

Irritable bowel syndrome

Sciatica

Polycystic ovary syndrome

Recurring pelvic inflammatory disease

Schizophrenia (no longer diagnosed)

Anorexia

Bulimia

Disassociative disorder

Borderline personality disorder

Asperger’s syndrome (no longer diagnosed, and a story for another time)

Major anxiety disorder

Severe eczema

Recurring urine infections

And I’ve been tested for:

Endometriosis

Thyroid disorders

A pituitary gland tumour

Coeliacs disease

I suppose we can now say brain tumour, after my waste of time neurologist appointment.

Each of these diagnoses and tests have required appointments; most more than one. I have seen hundreds of doctors and waiting rooms in my lifetime. I know my local hospital inside-out. I’ve had things taken out of my body, tissue lasered away, probes stuck up me, ultrasounds and MRIs scan me. I’ve had X-Rays, a CAT scan, a EEG. I’ve had lights shone in my eyes, I’ve pissed in a thousand tiny jars, I’ve had more blood tests than I can remember. I’ve spent hours in A&E. My heart has stopped in a hospital bay. I’ve been ‘hhhmmm’d’ at more than I care to mention. I’ve been patronised and dismissed, only to be back in hospital days later. I know how it feels to ride in an ambulance in gas and air. I know how gloomy the high-dependency unit is.

My life has revolved around doctors, specialists and hospitals. My paper medical notes are huge and tattered from being sent around the Northwest on a regular basis.

And yet, very few answers have been forthcoming. There was a time when I believed that one day the tests would stop, but I confess to losing that faith now. It’s a hellish never-ending cycle, and yet some people – the disbelivers – think that this is a desirable life. That I would rather live like this than work.

They’re very wrong.

I didn’t ask for this.

Related articles

• How Do You Handle Chronic Illness Setbacks? (ohmyachesandpains.info)
• In Sickness and In Health…??? (yentabobenta.wordpress.com)
• Tips for living with someone who has a chronic illness? (ask.metafilter.com)
• Life And Chronic Illness (thoughtsunthinkable.wordpress.com)

 

I don’t know how much more I can take

Facebook rant on neurology appointment

 

Oh, how do I feel about my shoes? They make me awkward and plain.

Every day you must say
So, how do I feel about my life ?
Anything is hard to find
When you will not open your eyes
When will you accept yourself ?
I am sick and I am dull
And I am plain
How dearly I’d love to get carried away
Oh, but dreams have a knack of just not coming true
And time is against me now…oh
Oh, who and what to blame ?
Oh, anything is hard to find
When you will not open your eyes
When will you accept yourself, for heaven’s sake ?

- Accept Yourself, The Smiths

 

The plan certainly wasn’t for the whole day to become an unholy disaster, but it seems I simply just don’t have a choice in these things. My mother shouted at me until I agreed to get out of bed, demanding that I sort myself out and take control of my life. This set the precedent for the rest of the day; her angry over very little, me building up into a barely-controlled ball of anxiety and fear every time she opened her mouth or even looked at me. I’m trying to keep calm for the neurologist appointment, but she won’t stop taking about it. I know I sound like a spoiled child when I say this, but it’s not her appointment; it’s mine. Just like so many other things, she has taken it upon herself to arrange transport, demanded I write down a list of symptoms, made me type out a list of the medications I take (why won’t handwritten do?), keeps bringing up the subject of scans and tests. I’m regretting asking her to go with me (although I know she’d have naturally assumed she’s be going with me) because she’s turned it into a huge drama, when I was trying to let it slightly slip my mind so I don’t become scared of the appointment.

Well, I’m scared now. Too scared to sleep, and wondering what the hell to do. If I try to sleep now, what if I just lie awake worrrying? If I stay up, what if I can’t cope with the weekend after being awake for so long?

03.15am

Unsurprisingly, I’ve given up on the idea of sleep. I did feign one attempt – even going so far as switching the lamp off and avoiding caffeine all evening – but, as usual, the brain won’t shut up. I’m thinking about tomorrow; about how tired and grumpy I’ll be in the taxi. How the smell and lights in hospitals make me feel skin-crawlingly uncomfortable. The neurological centre is attached to the hospital my stepfather was admitted to when he sustained the brain injury, and although I can’t remember what it looks like now (too much dope, too many sleepless nights), I suspect it’ll bring back feelings I’m not really in the mood to recall.

I’ve calmed down since this afternoon, after having three or four joints and listening to Erasure for a while. Earlier, I was livid; on the edge of screaming and stomping like a toddler and running away somewhere safe. The catalyst for my anxiety was this small snippet of conversation:

Mother: “Until you’ve sorted yourself out, there’ll be no more weekends with S“.

Something inside me flipped, as it has so many times before. Just those few words turned on the waterworks (which I think I kept hidden) and created a bubble of panic. I sat on the sofa, trying not to cry, torn between staying downstairs and getting into yet another argument, or running to my room, grabbing a razor and dealing with the building panic attack before it got unbearable. I think I would have harmed myself if we hadn’t been about to set off to go shopping. I suppose I just didn’t want to be walking around with the familar burn under my sleeves. I don’t want to be that way anymore and, fingers crossed, I haven’t given in to hurting myself for a long time now. Months. It’d be a shame to have to start again, all because of a throwaway comment.

You see, I’m becoming fearful that S will grow tired of my mother’s strange rules and ways of thinking, and leave me. Logic says that he’s not like that and that he understands the situation,  but since when did logic get in the way of a good freak-out? Also, I’m sick of being told what I will or won’t do. I’m utterly exhausted by it. I crave freedom and control, but I know I can never have either of those things while I’m under my mother’s roof.

The second thoughtless comment was regarding my eating habits.

Mother: “I’m going to have to start putting locks on the cupboards. I know it’s not nice to hear but you’re eating a lot and you’ll only complain to me when none of your clothes fit again“.
Way to go, Ma! Not only am I very much aware that the binging is out of control – thank you very much – but I also happen to be very stressed over it, and don’t need reminding how much of a problem it’s become again. I am aware of my weight at every second of the waking day right now; telling me I’m eating too much isn’t going to make me stop, or magically fix every problem I’ve ever had relating to food. Oh, I know it’s not entirely her fault – it’s easy to say something without thinking – but sometimes I get a little suspicious and wonder if she’s doing it on purpose. I don’t know why she would… to test me, maybe? To see if I’m truly over the eating disorders (she knows I’m not, surely?) by pushing the issue of food just when I seem at my most highly-strung?

I think I’m being paranoid.

Shopping was a rushed trip around the main street in the rain and gales we’re experiencing at the moment (which means it was Windsday), punctuated by my mother’s exasperation at my “behaviour” and my panicked outbursts. When I’m feeling as anxious as I did today, I get angry and frustrated. For years I thought that irrational rage was down to low blood sugar, but I’ve come to realise that it’s a side-effect of building up panic and worries inside my head until I explode.

One of my least favourite side-effects of panic attacks is how I turn everything in on myself. I’m naturally an introvert, but I can become incredibly cruel to myself when I’m filled with anxiety. The first thing I picked on today was the way I was dressed. It’s hard to explain how it works… it’s like voices, but I don’t hear them. They’re my thoughts, but as though they’re coming from a different brain.  I know nobody’s actually talking to me, but it can be deafening sometimes when I’m throwing insults at myself. Today’s voices went like this:

“Who the hell wears a knee length pink coat at your age? You look like an old woman”

“You can only wear old women clothes because you’re too fat to fit into anything nice”

“Everything looks awful on you, life was much better when you were a size 10″

“Look, everybody’s staring at you because you look ridiculous in that hat. A skinny girl would suit it, but not you”

Then:

“You’ll never escape. You’ll always live in this house, and you’ll die alone, without friends”

“People just pretend to like you”

“You’re worth nothing. You spend all day playing computer games and smoking dope. You don’t even have a job”

“Those boots never did suit you”

“You’ll lose all your benefits, and you won’t get a job because you’re no good at anything, and you’ll never achieve a single dream”.

… and so on, until my head was so crowded that I wanted to run. At one point, I did leave the supermarket, and went and sat outside in the rain on the cold metal bench while my mother bought cigarettes. I was panicking at the till – not helped by the slowest checkout assistant ever – and was getting all messed up in my head over which bags the freezer stuff went in and my mother’s insistance that I’d filled the trolley full of rubbish. She tried to stop me buying Diet Pepsi, saying I’m not allowed. I bought it anyway, if only out of spite. We’ve always battled over food and drink; she believes that the only way to survive in the modern world is to only eat organic food, only drink out of glass bottles, never drink out of cans because it can “give you cancer”. My beliefs are a little more relaxed, to say the least. Sometimes I wonder if she realises that she should just be happy I’m not anorexic anymore and doing my best to fight the after-effects of bulimia. She should be happy that I eat, and sometimes don’t read the nutrition labels or worry about how much salt is in a ready meal, rather than spending every waking moment terrified by calories.

 

Love was just a word before you showed it to me

Another pointless day, although I did get up early after forcing myself to go to bed around 10pm last night. I didn’t think I would sleep, but I’ve started taking Amitriptyline regularly again and I managed to get off after half an hour. Lots of weird dreams, mostly about O; why am I dreaming about him? They’re in no way romantic or sexual, but are happening very frequently now. Sometimes I think I’m dreaming about O, and it turns out I’m actually dreaming of S… I seem to be mixing the two together in my sleep, which is odd because they’re nothing alike. I suppose my relationship with O was my first real experience of proper love, and the way I feel about S is getting confused with that. My mind can be a strange place. What I have with S… it totally eclipses my experiences with O, it’s not jealous and bitter.

Speaking of S, I’m missing him. We did speak of perhaps meeting for a drink tonight, but I’m not sure I can cope with the transport problems the strikes are inevitably going to cause. I’m feeling tired and bloated and I suspect that if I met him I’d leave early because of how I’m feeling. I’m not too bad emotionally, but physically… I’m still being hit by that metaphorical train every morning. Hopefully tomorrow will bring some answers, or at least an opening to get some answers. I’m not sure I can keep up with feeling okay when my body is raging against me. All I want is to feel okay.

Had my hair cut and dyed at the weekend; I confess I ended up attacked it with Crazy Colour a couple of weeks ago. The bright orange was fading horribly, and even though I’m fair I ended up with dark roots. I went from this:

To this:

Crazy Colour in Fire

… to this:

Fudge Paintbox in Vendetta Red with blue/black lowlights

I suppose I can never be accused of blending into a crowd.