Thursday, 19 August 2010

Things Moms Aren't Supposed To Say

Sometimes I am sick of living a life wherein the best thing that happens to me all day is that the baby goes to sleep. Sometimes I want to be with all my old friends, all the people my age who are out having fun and not feeling crushed under a burden I wasn't prepared for.

Sometimes it's hard to be grateful for what I have when I feel like I had so much more 2 years ago. I know, I know. Every child is a blessing, every day your child wakes up and breathes is a miracle, but... She would have been just as much of a blessing in five years time when I'd finished figuring myself out.

Wednesday, 11 August 2010

Like Unwashed Windows

The funny thing about a long-term, pain-inflicting condition is that you don't fully realise or understand how much pain you're in or how much it affects your life until it's not there anymore.

Last night I got a reminder of what life is like when your whole body doesn't ache and stab mercilessly, all day every day. It was so bizarre, to not be in pain. My body felt numb, but it wasn't, it was just that the points of pain which have been identifying markers for so long weren't there.If I thought about it, I could still FEEL my hip, it just wasn't in pain. I could still FEEL my knee, it just wasn't in pain. Never having had any sort of severe condition, never having broken a bone or anything like that, I'd never experienced pain that lasted longer than a few weeks until suddenly I was in pain every day for 18 months.

Being out of pain for the first time was eye-opening. It was like I had been living in a house with unwashed windows for so long that I'd forgotten what the outside looked like. I'd forgotten that there was sun, that there was grass and trees and such beautiful things. Maybe I was just high, but for the first time since I was pregnant I could see things clearly. I could remember how I used to feel, before my whole life became about controlling and limiting my actions so I could control and limit my pain. My world had shrunk down so far, into what could be achieved without pain, or what had to be achieved and how much pain it would cause. You can't have a happy, fulfilling, and productive life if you focus it on pain. Or at least, I can't.

I have been such an unpleasant person over the last year-and-a-bit. I'm snappy, difficult, miserable, negative, impatient and withdrawn. I make an effort to be pleasant, cheerful, and delightful in public when I see people, but the truth is I almost never see people because it's just too hard. Most of the time I'm at home, alone, moody and brooding. There have been times when my world view is so clouded that I've had serious thoughts of suicide, and -more worryingly- divorce. It's so hard for me to see good in things when I feel bad all the time. Last night for the first time in ages I felt close to Mr A, properly close. Not just physically or out of gratefulness because he'd done something nice that day, but the sort of closeness that comes from feeling years worth of happy memories and good times. A stretching, reaching sort of closeness. A warm, safe feeling that wasn't interrupted by 'Ow, my hips' or 'Shit, my knees'. It was like someone opened the door of the room I was in and let in some light, and allowed me to see all the rooms I'd walked through before, with him.

The only real problem with this is that I'm becoming hyper-aware of when the pills wear off. The pain starts coming back, my mind becomes fuzzy and I get a feeling of slight panic. I lose concentration and start losing my train of thought. Not good, and I'm understanding more and more how people becoming addicted on pain medication. Before that, there's also a slight nausea that's near-constant, but it's worth it to feel this GOOD all the time.

Tuesday, 10 August 2010


This afternoon I was treated to a truly wonderous display of the way the NHS works when it really does work. As a dance of various components of our medical system, it wasn't a fine ballet, but there was a rythm and a beat and I wouldn't mind watching it again.

3:30: I go in to see my general practitioner. I explain that I am in pain, all the time, that my body doesn't do what it should, that my bits don't stay where they are put. I tell him I'm exhausted, all the time. After an initial confusion wherein he thinks I've already seen a specialist for this problem (no, I had an x-ray for a suspected broken foot in April) he makes an appointment for me with a rheumatologist for a day and time that suits me, as soon as the waiting list allows. When asked about pain, he asks how I've been treating it, then prescribes me stronger painkillers. When asked about the exhaustion, he says he doesnt think it's connected, and gives me an 'order form' for blood tests. I leave his office with a half-smile, clutching three very precious bits of paper. I don't pay a thing.

3:50: I enter the pharmacy, and hand over the prescription. I ask if I'm still entitled to free prescriptions on the grounds that I'm on benefits and low income. I'm told yes, I am. Ten minutes later, I leave with 60 co-dydramol tablets, enough for between 7 and 30 days, depending on how much pain I'm in. I don't pay a thing.

4:10: I walk into my local hospital's phlebotomy department.

4:25: I am called through into a room where a polite man in a clean uniform smiles at me, takes my order form, and within a minute, has gently inserted a needle into my arm, extracted enough vials of blood for the tests, applied a cotton swab and taped me up. I thank him, and he wishes me a good day. I don't pay a thing.

By 4:35 I am back in my car headed home, having experienced one of the most iffecient interactions I've ever had with our medical service. The most wonderful thing, for me? All of this, the initial appointment, the blood tests, the referral, an the appointment with the specialist, when it comes, as well as my rescription, was completely 'fre', in that no one asked me for any money, and I didn't have a moment of sitting there debating with my doctor as to whether I could afford the care I needed. That's not a factor. Whether or not I can afford to live pain-free existance doesn't come into it. Yes, I will 'pay' or these services in taxes, in the £200 a month the government skims off my husbands paycheck, but when I need them, I don't have to check my bank account before heading into the pharmacy or the hospital. My major worries as they're drawing my blood? Fainting, not my overdraft.

There is the small matter that the wait to see a rheumatologist is a frankly shocking 58 days in my local hospital, and a not much better 32 days at a further hospital which is the soonest we could get an appointment. But the thing is, I'll be able to see someone, and I'll be able to do it for free, and I'll be able to get answers that if I had to pay for my care I may not be able to afford.

In the mean-time? I have painkillers. The painkillers do, admittedly, kill the pain. I got to be pain-free for the first time in months tonight and it was exciting. When they wore off, a little shiver of panic and a whimper of grief scuttled through my body. However, they also make me dizzy, and extremely nauseated. I had to lie down for four hours until they wore off, because sitting up, standing, walking, everything made me want to vomit or fall over. That was on a 2-pill dose, though. I've now taken a 1-pill dose in the hope that that will kill the pain without killing my nervous system.

In other news, I looked up 'rheumatologist' in an effort to understand what I was getting myself into, and subsequently convinced myself I have Lupus. Yeah. Maybe I should rename this blog 'The Hypochondria Star'.

Sunday, 8 August 2010


I'm totes alive, y'all. I promise. The miscarriage is over and my hormones are starting to settle down. I am sorting through stuff in my head so although I have things to write, I don't really have the gumption to write them. Also, Mr Man is working ridic hours right now so The Beast and I are alone all day and that is SUPER TIRING Y'ALL.

I get southern american when I'm sleepy.

My pain levels are through the roof, and my legs are doing WEIRD THINGS that legs shouldnt be able to do. Tonight after having sex all the joints from my neck down just decided not to do their jobs. I tried to push up with my arms from lying on my stomach and my shoulders gave out, my legs were hanging out of my hips sockets and my knees were doing some sort of ridiculous thing where the kneecaps decided not to join the rest of my legs.

I've been thinking alot recently. I've never really believed I had EDS, or any sort of hypermobile problem. I always thought there'd be some other explanation, that it was too convenient that a friend should happen to be talking to me about her own EDS, should happen to send me a link to a blog to explain things, and that I should happen to find this syndrome so very like what I was experiencing. But the more time goes on, the more pain I'm in, the more my body does things that it just SHOULDN'T, the more I think 'Hey, maybe the universe had a plan, and who the fuck am I to mess with the universe?'

I went to a drop-in nurse last week, just to seek reassurance that all this stuff was abnormal. She took one look at my hip dislocating and relocating and immediately told me it WASN'T normal, that I NEEDED tests and specialist referrals, that something had to be done. The relief I felt was just astronomical. For someone to tell me that it wasn't all in my head helped so much. I sat down with Mr A and said I really needed his support in seeing a doctor about this. I needed him to come and hold my hand, because I was scared. We're making an appointment first thing on Monday.