30 June 2011

The Gallery - My Weekend

This weekend I attended my first Quaker Wedding. For those not familiar with Quaker ways, it's not a typical marriage ceremony.

First we settle into the silence, as we would at any meeting for worship. There is no minister or preacher leading, only people standing to speak as they feel moved. Often they speak about the couple or simply reflect on marriage in general. At some point the bridge and groom will stand and say their vows to each other and sign the wedding certificate. The worship concludes after about forty minutes with the shaking of hands. Then my favourite part, everyone who witnessed the marriage then signs the wedding certificate.

I think it's a wonderful way of bringing a community together. At least when we planned our (non-Quaker) wedding, having our family and friends there was an important part of the day. We could have just eloped, but we wanted to share the event with those important to us. I feel that the signing of the Quaker wedding certificate acknowledges that we don't just get married, we are often sharing a part of ourselves with everyone there.

We finished the day with a shared lunch, which was perfect. For me the photo captures the joy of coming together as we celebrate our lives.

29 June 2011

Being honest

Through the Gate
Come regularly to meeting for worship even when you are angry, depressed, tired or spiritually cold. In the silence ask for and accept the powerful support of others joined with you in worship. Try to find spiritual wholeness which encompasses suffering as well as thankfulness and joy. Prayer, springing from a deep place in the heart, may bring healing and unity as nothing else can. Let meeting for worship nourish your whole life.
- Advice & Queries #10

This is passage is one I go back to time & again to remind myself it's okay to struggle. Because I do struggle; I'm usually tired, in pain, depressed and spiritually cold. It makes reaching that state of quite balance I'm searching for so difficult.

It feels like months since I achieved the magical reassurance, peace and even discovery, that I can find in the silence of meeting. Today was particularly frustrating. Between my sprained toe, the ache in my kidneys, the fibro pain in my hip and the swollen thyroid gland pressing on my throat, I was driven to distraction. Each time I accepted one pain enough to ignore it, another jumped up in its place. Like a frustrating game of whack-a-mole, I just couldn't settle into the deep silence.

After twenty minutes of frustration, someone started drilling outside our window. I've never been so glad for the harsh grating noise of construction work. While I'm sure it irritated others, the grinding noise blended all the pain into a single feeling I was finally able to ignore.

Finally I settled into the silence, only to find I couldn't reach that voice deep inside. Whether you consider it you conscience or that of god inside each of us, it is wonderful to experience. Somehow you can see the world objectively, without the cloud of our own worries and perspectives, revealing to you the path you should follow.

But I can't reach it, it's like there's a thin barrier in my way. I can feel a tension in my mind that I can't release. I take a deep breath and try to relax the knot in my mind, only to find my eyes watering. Such sadness and I can't even tell you why.

And I think that's the problem. How can I reach that voice of truth if I'm not opening myself to it completely? Instead I have an attic of emotional boxes. A collection of life's everyday obsticals that I can't change. So rather than fret, I pack them in a box, slide it out of the way and move on. But like lead weights, these boxes seem to drag me down.

So today I tried to be honest. I tried to open myself so that the 'light' could reach every corner. I imagined I was shedding the hard protective shell I hide behind to reveal my true emotional centre, with all its raw and ugly intensity.

I failed of course. Its second nature for me to put a cheerful smile on everything and a difficult habit to fight. I'm not suggesting of course that I need to solve every problem in my life, or even that I need to talk about the experiences hidden in these boxes, but perhaps I need to accept them and the difficult emotions wrapped around them.

Maybe I can't find myself and that centre I'm looking for because I'm ignoring so much of myself. Maybe I can't find my voice in my writing because I'm hiding from myself. To reach that deep restoring silence, maybe I have to honestly accept the weaknesses I'd rather just ignore.

27 June 2011

Dark Skys


I don't even know where to start. I've been feeling awful for weeks now and it's leaving a haze of frustration and anger over my life at the minute. Not that awful things haven't been happening as well...

On Monday we had a hospital appointment with the endocrinologist (because in case you missed it: I not only have fibromyalgia, hypermobility, kidney stones and IBS, I've also been diagnosed with Graves Disease). I'm not really to concerned about it to be honest. It's inconvenient and has a few unpleasant effects, but it appears to have an easy and clear treatment. It can have an effect on fertility though.

There's little point in rehashing all the details, but the gist of the story is: While I'm gobby enough to question a doctor about the whys and hows of my condition - I'm not a doctor and I'm not qualified to dictate my own treatment. By the time we left the hospital she'd made four recommendations and we'd changed everyone of them. She agreed with the changes obviously, but it completely undermined my confidence in her assessment. It didn't help she was a student doctor that had absolutely none of my notes (not even the letter the consultant - her boss - sent us summarising my treatment so far!) and she also asked some insensitive questions about my 'miscarriage'.

I was really unhappy after the hospital appointment, so made an appointment to see my GP. I suspect that my GP thinks I'm a bit more fragile than I really am. Over the last month I seem to burst into tears every time I see her, but she seems to think this is normal after the trauma of losing the ectopic pregnancy. I'm not convinced, but she might have a point. I really did get angry after the endocrine doctor asked "So, you've had a miscarriage? Was it just the one?" And when she cheerfully asked "I'd like you to have this thyroid scan, but it will mean you can't get pregnant for two months afterwards, okay?", luckily I could point out my iodine allergy which quickly scuppered that plan without a fight. Even now these don't seem like things that should upset me so, but you should have seen my GP's face as I recounted the tale. She was not impressed and suggested I could file a complaint so it wouldn't happen to anyone else.

Add to all this that I fell down the stairs and sprained my big toe minutes before leaving for the GP appointment, and I've really been feeling sorry for myself. But loads of good (and very tiring) things have been going on too. I've been on a day trip out to Ruthin, we've attended a wedding blessing ceremony, a Quaker Garden Party and have a gorgeous new espresso machine to play with - but I still feel isolated and out of step with the world, like there is no place where I belong. I feel angry that the ectopic rupture has interrupted our lives, that despite feeling better for weeks now we still can't try for another two months. I wish I had the talent of other blogs for turning such abstract pain and frustration into a pithy empowering statement on surviving life, but at the moment it just sounds like whinging even to me.

Silent Sunday

Silejavascript:void(0)nt Sunday

22 June 2011

The Dress

The dress

A long time ago when I was young and before I became ill; I used to dance.

I adored swing dancing. We'd get all dolled up in our 1940s dresses and head straight to the dance floor. It didn't matter if you were on your own, you could always make friends quickly. During a really difficult period of my life dancing helped me stay strong. In ways it was empowering, giving me control over my life.

That was before the Fibro of course. When I moved to England I couldn't find anywhere to dance in the north. There were clubs in London obviously, but that wasn't viable. Plus once the pain kicked in dancing wasn't so easy, and I put on so much weight with the medication they gave me. All my old vintage dresses grew too small, and after a few years I eventually returned them to a charity shop for some other lucky person to find. It was heart breaking to loose everything so completely, but what could I do.

Sliding a few years forward, a friend wore a gorgeous 50s Circle Dress by Vivien of Holloway to our wedding. I was instantly enamoured; in retrospect I wish I'd bought one of these as my wedding dress. Made from new material to vintage patterns, these dresses offer all the glamour without the fragility of vintage clothing. (I also had a chance of finding one to fit my new curvy figure.) But at £70 - £80 I couldn't justify the costs, I mean where was I going to wear it?

A year later Mr Goldfish's good friend was getting married and I was desperate for a dress. For once good fortune was mine, and I managed to find the dress pictured in the spring sales - just £35. I loved it. I finally felt like a real person again; it gave me confidence. This was my perfect dress!

Ironically, I can't wear this gorgeous dress any more. When we realised we were being referred for IVF I made a huge effort to lose weight. I've lost 2 stone over the last 8 months, which means the dress is huge on me, but I still love it. I'm always tempted to go and buy another in my new smaller size.

I have friends who think I'm mad for being so passionate about a dress, but I think this dress was a first step in claiming something back something of myself.

12 June 2011

So where have I been...

Sutton Hoo

I would say it’s been a long hard year, but it’s only been 8 months since I last posted.

Towards the end of November Mr Goldfish’s results came back as fine. Apparently the extra vitamins and the loose boxer shorts made a huge impact on his morphology. And while this was good news, it meant I was back under scrutiny. With the stress of Christmas and also losing my Incapacity Benefit, I found I didn’t have the energy to open up and write about the weeks of waiting and stress. I was battening down the hatches, locking away the worries and pain.

We made it through Christmas and the last few tests, before being proscribed three months of Clomid. Four weeks later I crawled out of bed and took yet another pregnancy test. Groggy and half asleep, I waited the three minutes and then crawled back into bed disappointed. Ten minutes later, while I debated between indulging in a good sulk or plastering on another smile, Mr Goldfish calls in from the corridor “... You know there’s a line?” What???

I hadn't put my glasses on that morning, so I’d missed the very, very faint positive line. I was completely torn between guarding my heart and daring to hope. We took another test that day, just to see if it might be a mistake...but there it was, that slight hint of colour! The next morning we impatiently tried another test, but the line was still hard to see. Where was the really dark line you see on the commercials?? So we waited two more days, we knew we were pregnant - I just worried the faint line could mean it was ectopic or that we may miscarry. Four days after our first test the line was only slightly darker. Luckily we had an appointment booked with the doctor. She thought we were going to get the results of my thyroid test, so when I pulled out the four positive pregnancy tests she was a bit shocked.

With rather bad timing, my thyroid test showed it was hyperactive to such an extent that I had turned toxic in just a few months. While in the doctor’s office that day my pulse rate was about 142 bpm. Not a brilliant situation at the best of times, it certainly wasn’t good while pregnant. After some quick phone calls to the local hospital the GP sent us out with several sets of tablets and an urgent referral. Unfortunately, the urgent referral wasn’t exactly quick. It bounced from department to department at the local hospital before being rejected. They weren’t willing to treat the hyperthyroid condition if I was having my prenatal care at Liverpool Women's. So more referrals were made and I finally had an appointment booked for the 1st of March. I got my big plastic envelope full of pregnancy advice and had my big binder for appointments. This was really happening, I was 7 weeks pregnant.

March 11th I was home on my own when I felt the start of an IBS attack. I ran up the stairs to the bathroom, but nothing seemed amiss. I went and sat on my bed a while waiting. Another trip to the bathroom and I was starting to feel dizzy and ill, but my stomach wasn’t budging. I rang Mr Goldfish at work to tell him I wasn’t well. It felt a bit like the first (and very worst) kidney stone pain I’d had, so I tried curling up on the hall floor with my back in the air. That just made things worse. I went to the bathroom again, still hoping that it was just bad IBS. I wouldn’t be so lucky. On returning to the bedroom I remember bouncing into the wall; I awoke to find myself lying on the floor. I rolled over and felt around, finding my bedside table just inches from my head. I now knew where I was, but I was having some difficulty moving. I climbed on the bed and rang Mr Goldfish again, telling him to come home now! I was hot and clammy and the polyester Canadian Hockey jersey was making everything worse. I managed to pull the jersey off and then didn't move for the next hour or so till the Mr got home.

With Mr Goldfish there for support I headed for the bathroom once more, but collapsed again. We didn’t really know what to do. There was no bleeding, I was conscious and talking for most of the time...I just felt really rotten. He called the hospital for advice, and they told us to call the GP for a home visit. He called the GP and they said call an ambulance.

It’s probably a good thing we did. The pregnancy was ectopic and ruptured at 8 ½ weeks. I now have the equivalent of a caesarean scar; I also lost 4 litres of blood and my right tube. In the end I received 5 units of blood, 5 units of frozen plasma and another 2 units of blood in ICU.

That was 13 weeks ago, and for the most part I’m back to normal, though we can't try again for another 3 months.

So it's back, yet again, to waiting.