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All these things that you don’t know. It seems so much better that way.

Even now, despite everything, there are things I cannot and will not say.

 

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After the years (and it has been years, now) of tests, needles, white blood counts, pissing in little bottles, waiting, sleeping in my own sweat, painkillers, vomiting and counting the isolated days, there are still things I don’t want to admit to.

The ulcers. Deep in my cheeks. On my gums.

The dreaded nausea, keeping me awake. The vomiting.

The itchiness. The sore throats. The coughing. The headaches. Chest pains. Shortness of breath. Dark, sickly urine. Stomach cramps.

All these things I am supposed to tell a doctor about at once, but part of me – the part which is stronger, more willing to fight – refuses to confess, because they are all symptoms which mean the methotrexate may not be treating me as kindly as the doctors had hoped, and all symptoms which may mean the treatment needs to be stopped immediately. I know it’s far from sensible, but what can I do? In the past few weeks, the pain and swelling has reduced dramatically. I can walk again. I. Can. Walk. Again. I can make a cup of tea. Sleep without being woken by knives digging into my skin. I can have sex with my boyfriend again. I can put a sheet on the bed. Shower when I need to – mostly. Arrange a bunch of flowers. Fasten buttons.

All small things. All things which matter.

Without the medication, I am nothing once more. I don’t want to be nothing.

 
6 Comments

Posted by on November 3, 2013 in Every day life

 

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My little empire.


“My little empire
I’m sick of being sick
My little empire
I’m tired of being tired”

 
3 Comments

Posted by on February 16, 2013 in Every day life

 

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As peaceful, the world watches down

It’s raining.

Two weeks ago, I was sunburned and half-delirious from an unexpected heatwave. Today, it’s cold and overcast, with temperatures heading towards zero and snow falling less than twenty miles away. The wind is rattling fence panels and blowing through the bay tree in the back garden, under my bedroom window.

There’s a candle on my desk, and tobacco on my laptop. Yesterday was mostly spent sleeping.

It’s 01.15am.

It sounds romantic to spend most of my nights awake, chain-smoking joints and reading novels. For a while, I suppose it was. However, although I’m naturally nocturnal, I do miss the feeling of getting up in the morning and actually doing something.

I know I have all the excuses in the world. Pain. Depression. Anxiety. Worries about the future. Anyone would want to sleep to hide from it. Some days, like yesterday, getting out of bed is a painful, fruitless exercise anyway. Yesterday, it was my knees and ankles; I could barely move them. I managed to go downstairs a few times and make myself sit up when I was awake, but painkillers don’t help and sleeping is just a much easier option.

I like being the only one awake at night. Always have done. I adore the peace and quiet, and being able to hear the tiniest noise; it just feels more comfortable, somehow. I like looking out of my bedroom window and seeing which houses still have lights on – seeing who’s still awake – and imagining the reasons why they’re not asleep. At night, I can write without distractions and spend time thinking about things without interruptions. It all sounds terribly selfish, really. I’ve just never really been a day person.

After spending four days together, I’m missing S. I suppose you could say that we’re somewhat attached at the hip, and when I’m apart from him it feels unnatural. Strangely though, it’s not in the obsessive, clingy way I missed O or other ex-boyfriends. I don’t get the urge to phone S every half hour, or pester him with text messages. I don’t feel as though my heart is being ripped out. It’s just… he’s not here, and it feels a bit empty without him. He’s my sidekick.

Sometimes, I still wonder how I managed to find somebody like S. Not only that, but how I’m not half as governed by BPD in this relationship as I have been in past ones; although that’s most likely down to medication. In the past I’ve always been obsessive and unable to listen to reason, poking at wounds relentlessly until an argument breaks out. A year and two months into my relationship with S, and there still hasn’t been a single fight or even small falling out. There’s just been no need for it.

Over and over, I’ve searched for any possible reasons why I could be somehow making things out to be rosier than they really are, as I’ve been apt to do in the past, but I honestly can’t find a single one. For the first time in my life, I have something real.

 

 

 
26 Comments

Posted by on April 4, 2012 in Every day life

 

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I’m learning to walk again, I believe I’ve waited long enough

Spent most of the night wasting time online, reading other blogs and smoking. I never sleep well the night after I leave S’s house; I miss having his arms around me when I fall asleep. I know, soft isn’t it? I’ve never liked sleeping in the same bed as somebody else – I move around a lot, kick, flail, get too hot then too cold – but sleeping with S has never been the problem it always has in the past. He just has to put his arm over my chest and dig his nose into my back, and I’m calm. I sleep like a baby.

In contrast, most of today has been spent catching up on the sleep I missed last night. I did manage to get out for a walk (admittedly, I was forced to go because tobacco supplies were running dangerously low), wander down the embankment near the marshes and actually get out on my own for once. It’s been a long time since I felt able to go for any real kind of walk, but the sun (it’s been another hot, unseasonal day) buoys me up significantly.

I paid for it, of course. Aching legs and a headache. I used to walk miles every day without thinking about it; now all I can manage is a trip to the shops. Sometimes, that’s a really depressing thought.

I’ve never been particularly into fitness, but in my childhood I ran around a lot. In my teens, I walked constantly, wandering for hours. Early twenties, I’d make myself go out every single day for long walks along the sea front. I love the freedom of being outdoors, which is strange considering my agoraphobia; you’d think I’d hate the wide-open spaces and being able to see right across the sea. I don’t though; it’s only people I can’t stand. On my own, I’m in my element. I miss having that freedom now, and feel almost cheated that it’s been taken away from me by chronic pain and fatigue. I want to try walking again – today’s attempt could have gone much worse – but I’m worried by my limitations. I still don’t know when to stop, how to conserve energy for the rest of the day.

Sometimes I worry this is all I’ll ever be able to do. That my strength is gone.

I still don’t have the guts to weigh myself. I should have done it two weeks ago, but I’ve been putting it off in case I somehow weigh more or haven’t lost anything. I’ve been controlling the binges quite well, and I’ve stopped eating in the middle of the night, and along with loosely following the Slimfast diet I think I may have lost a couple of pounds but I just don’t dare go step on those scales in case it sets off a series of events I can’t control.

 

 
50 Comments

Posted by on March 26, 2012 in Every day life

 

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Fritter and waste the hours in an offhand way

Diet cherry Coke and The Sims. A joint. My laptop screen. The only things keeping me company as I attempt to pull an all-nighter to reset my body clock. Stupid daylight saving, stupid upside-down sleep weekend.

The weather was beyond glorious over the weekend, and S and I spent most of it sat in his landlord’s garden, smoking, drinking red wine and talking about nothing. On Friday, I sat under the veranda of the pub and waited for him to finish work, nervous with anticipation and apprehension about telling him we’re not going to be able to rent the house. Sat and smoked, feeling a bit paranoid I was being watched; a silly delusion, but happens when I’m stressed.

Of course, I needn’t have worried. I need to stop letting myself panic so much; S has proved over and over he’s not about to run away screaming if I hint at any commitment. We had a drink and I told him I’d had a message from the woman, saying she was going  to sell instead of rent it out. S just shrugged and said, “oh well, we’ll have to find somewhere else then”. We spent an hour or so looking at flats and houses online, and – surprisingly – there were quite a few nice ones within our budget.

I had to let paranoia get a small look-in, so I asked S if he really still wanted to live with me.

“Of course, i want to wake up with you every day, I need to live with you”.

Where did I get that man from? And can I never have to give him back, please?

 
20 Comments

Posted by on March 26, 2012 in Every day life

 

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Tell Me About Yourself award

Fibromodem has nominated me for this award; thank you! If you’re dealing with fibromyalgia or know someone who is, I can recommend her blog for a candid insight into living with chronic pain.

Nice easy rules; seven things about you, a thank-you, and seven nominations of blogs you feel deserve the award. Actually, the rule is “seven things others may find interesting” but I don’t have enough confidence to assume if anything is interesting *gets out tiny violin*. So, just seven… things. About me.

1. One thing which is guaranteed to get on my nerves is when somebody says “of” instead of (ha) have. I don’t know why it annoys me so much, and I know it’s only a small thing, but it really winds me up and I have to go for a little calm down after hearing/reading it.

2. Same with comic sans. Sorry if anybody’s a fan, but I can’t cope with that font. Really, really can’t cope. It enrages me – as does Papyrus and Lucinda Handwriting – and I often go on anti-comic sans rants. It doesn’t even deserve a capital letter, it’s that hateful.

I don't even want to look at this picture.

3. S and I have an incredibly naff relationship in-joke, revolving around quotes from Jurassic Park. If he’s playing a game, I sit behind shouting “shoooooot her!” and he often quips “I’ll show you” or “what species is this?” in the middle of conversations.

4. If my right eyebrow isn’t drawn on properly (I have naturally very pale, sparse eyebrows), the whole day is ruined.

5. Another hate is people singing lyrics incorrectly, or misquoting a film. Again, it’s such a small thing but I get so irritated by it. Once is fine, twice is being forgetful… getting lyrics wrong when you’ve known the song for twenty years is downright inconsiderate.

6. After years of wearing make-up, I’m still not quite sure how to apply blusher properly.

7. I used to write poetry in the back of my school books. Ones I’d written myself, or things such as The Raven by Poe. I don’t know why I did it; I wasn’t fussed about knowing my teacher would read them, but I didn’t particularly want to share the more private poetry with the world. I wasn’t looking for any attention, or to look clever. I just… did it. One day I was called to her desk after class, and she asked me if I wanted to speak to anybody about any problems I may be having. I said no.

The following blogs are all ones I follow, for different reasons. All worthy of an award, and all interesting people.

 

 
31 Comments

Posted by on March 23, 2012 in Every day life

 

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Happily Depressed

Oh the alcoholic afternoons
when we sat in your room
they meant more to me than any
than any living thing on earth
they had more worth
than any living thing on earth.

- These Things Take Time, The Smiths

Happiness is a strange beast. I feel more comfortable with fear and sadness – they are the ones who stayed with me through everything – and allowing myself to walk away from those emotions and embrace the positive is surprisingly difficult at times. Yet, occasionally, happiness slips in unnoticed.

When you have depression, being happy is a constant balance; a tightrope you could slip off at any moment. You wait for the fall, you anticipate the crash. Using the words ‘depression’ and ‘happiness’ in the same paragraph probably won’t make sense to everybody, and I suspect those who have never experienced long-term chronic depression will wonder if I can truly be depressed if I can feel happiness, if only in occasional fleeting visits.

You can. Sometimes the depression abates for a while, and lets a little light through. Oh, it always lurks in the background; waiting for a minor slip so it can worm its way back in. Depression doesn’t just go away because life has offered a bit of respite. It can, however, become the least important thing in your life for a while, and although I often find it difficult to find the blessings in my life, I’m grateful for the brief holiday the black dog has decided to take today. I like to think it’s gone to the seaside and will, hopefully, get stuck on a sandbank and drown. I can dream.

I once told somebody that I was happy being sad; that depression defined me, and I wouldn’t want to change. To an extent I still believe this, but over a decade has passed since that bold teenage statement and I now know that there is a level of depression which is entirely pointless – it brings me no creative genius or wonderful personality changes – and which simply scratches away at my being over time, dulling my mind, stealing my memories and filling me with pure apathy.

The last time this particular dog visited me was a couple of months back, and since then I’ve been teetering on the edge of sad and happy – never quite one or the other for any length of time – trying to find a comfortable balance. Most of my life is about balance, because few things about what I experience are perfect, and most is taken up by a mixture of confusion, the need for control, and anxiety.

However, there is one aspect of my life with which I am entirely happy, and this goes against everything I’ve learned from living with depression throughout most of my life. My relationship with S. The happiness I feel from this seeps into other parts of my life, and sometimes it’s difficult to feel apathetic when I know I have something so rare; a relationship which has never faltered, not even for one second. How many people experience that? A few? Certainly not many, I think. I began to think tonight that perhaps this happiness could be the doorway out of depression. A way of unlocking the door which has kept me in the dark room since puberty. I have never felt such happiness before – without the added jealousy and anxiety which has always destroyed past relationships – and I’m wondering if perhaps this can be the start of something; a way to unclip the black dog from his lead and kick him out of the van.

 
31 Comments

Posted by on March 7, 2012 in Every day life

 

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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.

 
25 Comments

Posted by on January 26, 2012 in Every day life

 

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When you’re on your own, it’s a long walk home

I went a bit crazy yesterday and decided that I would spend the entire day rearranging my bedroom and cleaning under the furniture – from the sublime to the ridiculous, you may say – and you know what? I did it. After hours of swearing, sweating, broken nails, too many smoke breaks and two whole films along with most of my Youtube playlist, I got it finished eventually, and I have to say I’m quite proud. It looks good. I’ve put my bed under the window against the radiator (tried turning it off since I overheat like a pig in a sauna, but couldn’t turn the knob) and moved my desk next to the bed, so I can reach my lamp more easily and also sit on my office chair with my legs up, rather than having to lie on the bed if I want to be comfortable. The telly’s been moved to the foot of my bed so I don’t have to sit in a ridiculous position to watch it, and I cleaned as much of the room as I could manage before collapsing. I still need to sort out my clothes and fold them neatly in drawers rather than have them strewn around the house like a gigantic floordrobe, but I’ll have to do that another day; I’m knackered now. In a good way.

On Tuesday I went for a walk, along the embankment beside the water-treatment plant. The sun was just beginning to set and the mashes were peaceful. I smoked a joint and watched some ducks paddle around in a marshy puddle. For all the faults living in a seaside town has (I have a mortal fear of tourists), we do get amazing sunsets – even the weak ones are impressive – and living a minute away from a nature reserve is perfect. I briefly volunteered for the RSBP on the reserve, but only went twice before copping out; it just wasn’t for me. I’ll miss it here when I leave; it’s always been my private place.

Went to the garage to buy tobacco, and coped pretty well. In all, I was outside on my own for around 40 minutes, and walked along two main roads. That’s more than I’ve done in months, and it’s only now I realise that I’ve missed it terribly. Considering I’m so fearful of the outdoors, I like being out of the house as much as possible. Typical.

I’m going to Liverpool with Z tomorrow.

 
13 Comments

Posted by on January 18, 2012 in Every day life

 

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