New Year, New List

It seems that another year has whizzed past me, and I’m not entirely sure where it went. I feel a little bit like I spent a lot of this last year bouncing between or waiting uncertainly between specialist appointments, and like a big chunk of it was spent on pause. It’s been a funny year in lots of respects, and I’m not sure that I feel particularly like marking the passage into a new period of time just at the moment. It doesn’t feel like a new beginning in the way that some other years have. I feel mid cycle rather than start/end – though to be honest, new year never really quite means all that much to me. Years of desperately disappointing parties and lists of resolutions that looked like this have rather left me cold over the years.

1. Lose weight


2. Find a boyfriend


3. Kiss him


4. Become amazing.

Over the years, this list has morphed, and I did sort of ok against last years list here - quick reprise:

1. Dress more smartly: I did well at this for half the year. And then it went a bit Pete. I got tired. But now I have a new jacket and have been trying again of late, so I think I can count this as a tick.


2. Easing off with the perfectionism: Yeah. No. Must try harder. Oh, the irony!


3. Acceptance: I think a 50/50 split on this, some days yes, some days no.


4. Socialising – specifically saying “yes with a caveat” more, and “no - just in case” less. I think I did this much better than all the other things on my list, and I think it has been a much more pleasant year for it!


5. Not letting the nonsense at work get to me: Epic failure here.

So, to this years set of aims. I’m not fond of definitive SMART (Specific, Measurable, Achievable, Realistic and Time constrained) goals and resolutions, as I feel dreadful when I don’t meet them, and at this time of year, I tend to feel a bit of a failure when I haven’t achieved them. I think this upcoming list is kind of why I feel unready and sad about the coming year.

1. Lose weight. I screwed up this year. I became so tired and confused with things that I have managed to put on over a stone and a half in 6 months. This pisses me off, having worked bloody hard over years to lose 76½lbs. And kept it off for 4 years. And then, this year I just, oh, I am so cross with myself. No. Not cross-disappointed. See number 2 above. I need to sort this out. My body can’t handle this extra weight these days, it hurts. I hate having this back on the bloody list of things to do, it makes me angry and feel like I’m back at school (though I have kissed a boy now. And married him. So that one’s safe – I don’t need a boyfriend on top, far too knackered for that sort of nonsense!) and entirely why I think I don’t want to write this post, and make new years resolutions. I am sulking.
   
   What a grumpy post I am turning this into. Must try harder.
   


2. Remove myself from my current employment (or learn to care less). It seems that I’m not very good at detaching myself from all the nonsense going on – partly because the nonsense changes flavour so regularly – so I think it is better to escape. No idea how this will pan out. I am sending positive thoughts to the ether for someone who wants a very adaptable, very willing lass for 4 days a week in the Winchester area for IT or organisational based activities for a handsome salary. Flexible hours and understanding of health issues preferred. My mum says that it is best to articulate your wishes clearly to the universe. I am happy and grateful for my new job. Thank you. (And if anyone wants to employ me, drop me a line. Ta).
   


3. I will attempt to put myself a bit higher up the pecking order of things. I need to stop sorting everyone else out first, and put on my own virtual oxygen mask first a bit more often. I was struck as we were flying home from our holiday and were doing their “exits here, here and here, pull sharply on the toggle to inflate, put on your own oxygen mask before assisting anyone else” business that this makes perfect sense. If I’m poorly, I can’t look after everyone else. If I’m sub par, I am doing a sub par job for everyone else. I’m letting others down by letting myself down. So I should start looking after myself more, and making that more of a priority.



4. Ease off on the perfectionism. I’ll try again, I think on this one! Very Good Enough, as opposed to best/perfect. Fingers crossed.

I’m hoping that 2012 will bring helpful specialists, some answers and less creaks. I am hoping that work out what’s going on and how to manage it. I’m feeling pretty hopeful on this front – January alone brings an MRI and two GP appointments, so fingers crossed for that, and having been referred to a specialist clinic I’m excited (heavens, my life!) to go to that and solve some mysteries. I’m fairly positive and think that maybe this year will be the year I get settled at least a routine of how to feel better.

And on that vastly more cheerful note, I wish you all a very happy New Year. I wish you health, wealth and happiness, and all the joy you can handle.

One Lucky Girl

As an English Rose, I don’t celebrate thanksgiving, but recently I’ve been thinking quite a lot about the things and people that I’m grateful for. I’ve been having a pretty sketchy patch of late, more emotionally than physically and it’s become apparent to me how many people I have who love and support me, in varying different ways. I am one lucky girl.

At work, my colleagues are pretty unthinking in general, but they have kind of accepted my slowness and creakiness as just me, and slow down to walk alongside without thinking – something I forget about until I go elsewhere with other people who don’t. Two of them are brilliant however – our office is up a flight of stairs that I really struggle with, and whenever they go down they always check if I need anything like printing or water. They help me with the fog in a really nice way that never makes me feel patronised when I lose my train of thought, and sometimes will help me untangle things by just talking through a problem with me. One has become an expert in translating the hand gestures and descriptions of words that I’ve lost, and the other has become my biggest cheerleader for making sure that I don’t overdo it – at a recent meeting about my reduction of hours at work, she said that she would much rather have me at work 4 days and well than 5 and ill, and that SHE would take matters further if they tried to make me go back full time. I am lucky to have two such lovely people looking out for me in the pile of crap that comes with my work – and it is so nice to have such shiny gems of people in amongst the darkness that it brings sometimes.

I’ve also recently been looked after in much more physical ways by another work person – not my usual work but a thing I do on the side once a year. I’d overdone it massively and he helped me by lifting me up rather than me having to try and clamber into and out of the van, and by hiding this from my other co-workers, knowing how much it would hurt my pride if they knew what a state I was in. I felt terribly vulnerable and afraid, and he was a gent and a star. He made doing something I love possible, where otherwise I wouldn’t have been able to. The idea of not doing this thing had had me in floods of tears the previous week, so he helped me not give in to the creaks, and I am eternally grateful for his help – and the discreet, non-patronising easy way it came.

I’m very thankful as well to live in the town where I do – it is a beautiful place with fabulous architecture, friendly people and really helpful local businesses and tradesmen. Whenever I go away and come back I am reminded how lovely it is – and when I come back from London for example I am grateful for the slower tempo accompanied by the arty, eccentric accepting vibe, the clean air and the astonishing views from it’s many hills.

I’m grateful for my family’s health, and the fabulous work that our NHS does. It gets a bit of a bashing sometimes, but without it, my mum would be dead, my dad and sister would be in constant agony with prolapsed discs, my grandma’s broken hips would have been prohibitively expensive and I would not have had access to the lovely team of specialists that I have been to see. My physio in particular has been inspirational and life-changingly helpful, and without the NHS I would never have seen her. I also am thankful for the men and women campaigning to keep the duty of care clause in that is currently going through the house of lords – my fingers and toes are crossed that we can amend Lansley’s plans to stealth privatise my beloved NHS. At this point in time I wouldn’t get private health insurance, so without them I’d be screwed.

I’m thankful for my two furry companions, who curl up with me when I am in pain and who never fail to make me feel better when I feel sad. I’m grateful for the kids, and the joy that they bring to my life – I’m not sure that I could have had any of my own and I am loving watching them mature and grow into young adults from the little blonde angels (at least visually!) that they used to be. I am thankful for the internet, the support and the friendships that it has bought me: people who I think of as my closest friends live in different countries and at the other end of my own. People I would never have met and people who have offered me comfort and support at various times in my life, in ways that would have been impossible in person sometimes.

But above all, I’m beyond grateful for my husband – I can’t even put into words how understanding, caring, loving and forgiving that man is. We didn’t actually say in sickness and in health in our marriage vows – but blimey, did he mean it. He supports me in everything – we are a team, and my reduced capacity to do the physical stuff hasn’t made a blind bit of difference to him. In fact – I think often I’m the only one who notices, let alone cares. I am incredibly lucky to have such a rock of a man by my side – my best friend, partner in crime and teammate. Whatever I did to get blessed with him, it must have been something pretty amazing!

Bibbidi-Bobbidi-Boo!

This last week or so, I have been round another loop of will I won’t I get a diagnosis. Is there a fix? What have I got? What does this mean? I’ve wound up with half a diagnosis of something that makes no real difference, and sent back round another loop of specialists again for the mystery guest condition.

If I could have one perfect gift this week, I would ask for a magic wand. I would magic myself a diagnosis, and I would then also make it one that had a fix. I would enchant a way of making myself feel better, making my life more normal, making things more like they used to be before.

I know this isn’t very likely however. So I will settle for going around another round of blood tests and poking and prodding and being made to feel like a medical oddity, or a tiresome mystery, hoping and praying that this time we get an answer, and it’s something that can be managed. I want to feel better so badly, and this recent round of diagnosis but no diagnosis has left me a little bit heartbroken. I would love, so badly to not feel like this again.

Failing that, I would like a pair of cashmere socks. Winter is heading our way, and I think toasty soft toes might be nice :o)

One Tired Day

I am so tired.

My eyes are a bit blurry, and my body feels like it has been switched for a lead cast. I can't focus enough to see the keys or the words on the screen clearly as I type this. It makes me grateful that I can touch type.

I am supposed to be working, and my to do list at work has scaled two whole sides of A4. I don't feel particularly concerned that I'm not, because to be frank, I can't really see or think coherently. I haven't even taken the painkillers yet, and I can feel them coming if my hands continue to ratchet up the pain scale that they are experimenting with.

This weekend, I cried. I curled up on the bed and cried into Mozz's t-shirt, leaving a seeping round dark patch. I am just so tired of hurting. I have forgotten how it feels now to not be in pain, somewhere, all the time. This is the most soul crushing thing to realise. It is almost like a door closing somewhere behind me - another turn around another corner that I can't go back round.

I'm still no closer to getting a diagnosis back. I had my first one taken away, and now I'm back in limbo, buying increasingly expensive creams to try and combat the stupid rash on my face and increasingly difficult and multitudinous physio exercises and Pilates sessions. I am grasping at straws, because these things will not help my hands or feet, but I am told they may help my hips, and back. And possibly help me stop dislocating ribs and things. So I plough on, unable to join a class with the big girls because I can't get my legs to move in the way it turns out they are supposed to. Who knew it could be so different from my day to day movements.

Every time I can't do something, I feel more and more a freak. When I finally get excited because I can lift my leg off the ground, everyone around me looks confused, or shows me the things that they can do way beyond that. I feel like shouting - IT'S NOT ABOUT WHAT YOU CAN DO! I'VE ACHIEVED SO MUCH! WHY CAN'T YOU JUST BE PLEASED FOR ME??!!

I'm trying very hard to not be so down about things at the moment. I have a huge number of things to be happy and grateful for. I had a lovely week on holiday, where I almost caught up with myself and felt a little bit less tired for a while. I have friends who increasingly are happy to help me, physically and mentally. I have a gorgeous, supportive husband, two calming furballs and a pair of blonde angels who love me. In the big picture, I'm happy. In the small, today picture, I want to curl up on the sofa with a blanket and some mindless nonsense (be that in book, film or TV form) and just rest. I don't want to be here at work, at my uncomfortable desk in my unfriendly office. I want to have a little cry and a snuggle with a cat, or even a bear.

In short, I don't feel up to being here, and wish I'd called in. All I can see, stretching ahead of me in the distance are things that need doing, and no real pause for the rest I really need to keep up my spoon count.

At least tomorrow is a working at home day. I might not get dressed for the ocado man.

Third Person Singular

It’s been drawn to my attention that I regularly refer to my body in the third person.

“I don’t think my body is going to be up to that”

“My stupid body isn’t working today”

“I wish my body wasn’t so creaky”

I’m not sure when I developed this tendency. It’s like I’ve put it in a third person box because I don’t want to own up that this stuff is me. I can’t say “I’m not going to be able to” I can only manage a “My body won’t be able to”. I wonder if I have separated it so I don’t have to own up to how it behaves.

I also don’t really recognise it in the mirror, which I don’t think helps. I was already at this disconnected place where I didn’t recognise it in the mirror having shed 75lbs and 8 dress sizes. I still don’t see that smaller person (see, 3rd person view again) and then it stopped behaving. I feel let down by my body and I wonder how much I can’t see that I am thinner now because I don’t want to own this new hurty body. I almost have more problems now getting dressed than I used to – which is quite possibly ridiculous. It is rediculous, in fact. *sigh*

I wish I loved my body. I wish I could put it back into the first person. But I can’t. And I don’t understand why. I wish I wanted to inhabit it. My house. My shell. My skin. My body. Me. Other people can see it, love it – want it even…

But I don’t. I don’t want it I almost want the bigger, healthier me back. At least then my attitudes to it would make sense.

I don’t know how to reclaim my body. I’ve this nasty habit of splitting bits of me up to make things easier to handle, and it’s a dangerous trait. If I’m not careful I’ll end up with an odd split personality again. It already shows in my wardrobe, a different, older, more ingrained split, admittedly, but still. I need to not split any more. I’m not sure I can be three people at once, and stay sane. Only, I wouldn’t be, would I, because I would be me, her and my body. Two plus a vessel to be swapped where possible.

Sometimes it feels like my body is trapping me. Pushing me in directions that I don’t want to go. Perhaps this why I can’t own it; it is in charge and I don’t want to own up that it is me that can’t manage 5 days a week in the office without breaking, that I am the one who can’t shop all day, that I am the one who can’t do all the things I want to. I can’t bring myself to own the failures and I don’t want to.

So I suspect that for the short term, I will remain firmly in the third person. It’s not ideal but until I can make this work for me, that’s the way it is staying.

Stupidity: You’re not alone…

I’ve been thinking this week about the latest topic for the chronic babe blog carnival – the stupid things that people say about chronic illness. It’s interesting because there are so many of them – “you don’t look ill to me?!” being a fairly widespread one I think we’ve all received, or at least a variation on a theme! I think that sort of comment is mostly from people who aren’t thinking, or are surprised and don’t know quite what to say. I wonder if there is some sort of socially acceptable response to something like cancer “oh no – I’m so sorry” (though I suspect there are a number of stupid things people say about that instead!) whereas for invisible things people don’t quite know what to say. So they say the first thing that comes out of their mouths that’s supposed to sound consoling – “but you look good?”

Some of the things people say, however, verge on the offensive. I never quite know what to say to the people who think that perhaps if I just pray harder, or had been a better person God might not be punishing me. Yeah.

No.

I feel like I ought to share a little xkcd cartoon at this juncture, because it made me feel better:



I think the most ridiculous thing anyone has ever said to me about my creaks was, disappointingly, a GP at my old practice (You may note I changed practices pretty soon after all this occurred!). I’d gone to see them a few times because I was so tired and hurt so much. I’d been sent for a blood test for anaemia, and it had come back clear. I was a tired and upset that I was being brushed off, and he said that they “often see these symptoms in teens and early twenties, and that I'd probably feel better when the summer came”.

I was a bit surprised and pointed out I was over 30 and this had been going on now about a year, and he sort of stuttered a little and said it was clearly a sign I was young at heart. I thought - oh, f*ck off. And burst into tears. I pointed out I didn’t feel very young – I feel about sixty and I fall asleep every time I am sat still. He said, “there there”, and practically shoved me out the door into the waiting room, still in tears.

I went home somewhat disheartened. Things got worse. So I finally got up courage to go back to the doctors – a different one in the same practice - and said, in a nutshell “I know I’m not well. Refer me to someone who knows what they are doing. I have narrowed this down to be a rheumatologist, because you lot think I’m making it up. I have private insurance so you don’t even need to work out who fits in your budget - just write the bloody letter”. I don’t say those words *exactly*, obviously, I am a nice girl, but I wish I had because the man proceeded to made me cry, asked if I was having sex with Dave (At 8.10 in the morning!!!) and then announced that this confirmed that I was either making it up, or making a supreme effort.

The word I thought isn’t for the eyes of nice people. But I got my referral, and a diagnosis, and things improved in the end.

The thing is though, I don’t believe that the stupid things that people say are just aimed at those of us with chronic illness. I married a man with children, so I am officially a wicked stepmother. I look after them 7 days out of 14, and have been looking after them for half of the younger one’s life. I love them beyond measure and would do anything to make sure that they are safe, well and looked after. The idea that any of either of them might come to any harm makes me feel sick to my stomach. Even creaky I have arrived 20 metres down a swimming pool in seconds to drag one of them out from under the water with the biggest burst of adrenaline I have EVER experienced. And yet I’m treated like I know nothing about looking after kids (because I haven’t been looking after two for knocking on 6 years), and that I don’t love them. I regularly hear “you can’t possibly love them like a real parent, they aren’t yours”. You wouldn’t say that to someone who had adopted a child, why on earth is it ok to say it to me? I’m not a real parent because they don’t share my genes – yet I’m the one washing their clothes, helping with homework, ferrying to school and buses, sewing badges on kit, tucking them in at night and talking to them about periods. I make their packed lunches and rearrange my work schedule so I can be home when they are. Even Dave’s ex-wife appreciates the amount I do for them; yet onlookers (including close friends) cannot see past the fact that I did not give birth to them. They think that my relationship with the kids is worth nothing, and that I do nothing for them; that they are just some sort of accessory to Dave.

I’m fairly certain, that you, reading this will be going “what nonsense!”. But I wonder if you’ve ever seen a step mum at the school gate, or in a circle of friends and dismissed her. I think I may have been guilty of this myself in the past as a child – it’s what we’re brought up on, a diet of Disneyfied cackling wicked stepmothers , Brothers Grimm tales and J Lo being a step monster.

I know I’ve gone off on a bit of a side track here – but I think it’s worth pondering. I think that we feel we are alone in having stupid things said to us – but I suspect people say stupid things to all sorts of people about all sorts of things, and in every room there will be at least one person who hasn’t thought through what is coming out of their mouth at some point. There are stupid people everywhere saying stupid things: we just happen to hear the ones that affect us. What is harder sometimes is to remember to hear the things people say that aren’t stupid – the people who really matter and care for us rarely say the unthinking things. My new GP trusts my words and believes me, and looks after me as much she can. Dave carries me up the stairs when I can’t make it on my own – sickness and in health. The kids tell me they love me, and think the world of me. And those are the things that matter.

New Year!

Every year, around this time, I sit and have a little ponder about the coming year. I usually wind up with a few resolutions – lose weight/keep the weight off, be nicer to myself and try to hold on to my marbles. That sort of thing. When I was younger, get a boyfriend used to be on the list, but now I’m married that seems a bit excessive!

This year, however, I’ve been thinking less about resolutions and more about what I’d like to try and do differently. The things that have floated to the top of my consciousness are all a bit different to usual – much less measurable, but probably things that will be better for me in the long run.

1. I am going to try and dress more smartly. I work in an office where it’s acceptable to show up in tracksuit bottoms (or at least, one member of staff thinks so, and no one has told him otherwise) and my standard of dress is slipping increasingly into jeans and a jumper every day. Nothing wrong with that, but I feel better about myself when I’m dressed smarter. My self-esteem and confidence goes up – and the higher my heels the more I feel like I can conquer the world. I’m 5 11” in flats, and the boys I work with are all about 5 8”. They don’t know my brain is full of fog half the time and I’m not letting on as I’m still better at my work than they are. After all, as the song says – you can be as brave as you make believe you are!



2. I am going to try and ease off with the perfectionism. I’m not going to be able to completely let go on this front because it’ a huge part of who I am, but I’m going to work harder at not being so mean to myself when I can’t achieve everything. I’m not up to it, and beating myself up about something can’t physically achieve does not help my health. I guess this is part of a bigger aim…
   


3. Acceptance. The holy grail of those with health conditions. I need to get better at working with my body, rather than against it. I think I’ve got a bit better over the last year, but I think it might need to improve some more! I also suspect that I could use the spoons I do have more wisely – less on ex wives and politics at work and more on looking after myself, the kids and Dave, and trying new things to ake me feel better. Including preparing more for appointments…
   


4. Socialising – I need to say “yes with a caveat” more, and “no - just in case” less. I’ve proved, mostly, that I can make more things than I think I can, and the people I see now tend to be ones who’ve either met me post creaks or love me through them. I am who I am and I still love company. My friends that are left don’t mind too much that I’m flakey.
   


5. Work – I’m going to attempt to not let the nonsense there get to me so much. I need to separate some of the emotion and energy from what I do at work and focus it elsewhere – not entirely sure where else it’s going to go just at the moment but as circumstances dictate that I can’t leave my job, I need to find a way to make things there better. A work in progress!
   

None of these things are particularly measurable, but I think they seem to be good things to aim for. I shall endeavour to apply the 2nd one to all of these as well – if I don’t succeed, there is always next year….

Grace in Bigger Things

I have been rather slack at updating this online, but my little note pad is up to date, I shall keep updating when I can till I’m back to where I’m supposed to be!

I have been off from the land of t’internet at a conference, and then at Dave’s mum’s. The conference went really well, I had a nice time seeing lots of people, being thought of as intelligent and physically not doing too bad either. I even managed some wine without feeling sick as I’d managed to hold off a bit on some of the tablets – hurrah!

The trip up to Dave’s mums, however, was less of a psychological success.

On numerous occasions I got left behind places and generally the fact that I’m not up to yomping about places was treated as if I was doing it on purpose to be difficult or awkward. No allowances were made for my creakiness, and this then caused tension because Dave then got cross because his brother and wife were making his wife feel like crap because she couldn’t keep up with an over energetic 4 year old. Or yomp at pace. Or get places as fast in the morning. Or stay up as late. I then felt bad that I was causing tension between them all and urgh. What a mess. I had felt all a bit pumped up about my success at the conference and my body’s ability to stick with it, and then to have this made me feel like I’d been run over by a steam roller. All my newly acquired self confidence vanished into dust, and I felt worse than I had done about my frustrating body than in a long time.

But, in light of this little trip, I am newly appreciative of all the people who do love me enough to slow down and make allowances. Like Dave, and the kids, who must temper much more of what they do with me and the speed that they do it at much more than I had kind of recognised. My work colleagues all walk at my pace when with me, and offer to get things from downstairs when I’m up in the office. My family do little bits and bobs like bring food when they come round for tea to help out, and on occasion my mum has helped me do cleaning and things.

I’m trying to think of this whole experience in a positive light – I’ve suddenly realised how many people actually do support me. There was a Chronic Babe blog carnival recently that focussed on who was in your “team” and I felt sad and lonely, and unable to join in, because it felt like my team only included Dave, Mum and Dad. But that’s not true at all. There are the kids, some of my work colleagues, the cats, Magic Janet the cleaner, Belle and Penny, my sisters’ friends who look in on me sometimes and after the cats when we’re away. My sister and her boyfriend are kind of on the edges but supportive when they can be as their lives are so mental themselves! There are the chronic babes, my WW ladies and my GP. My neighbours would help more if I could bring myself to ask (but I can’t – that’s my problem though!) and I have a wide network of friends that though I don’t see in person, do still think of me. So I guess this whole experience has been a learning one – I was less grateful than I thought, and more closed to the people who help me than I had thought. I am newly thankful, and will try to take time over the next week or so to tell these people how much I appreciate them. Because I really do.

Fix You

This is a bit of a break in the usual listy transmission, and a cross posting from my usual place - it just seemed like a very good place to put it. I am having a bad day today - two lots of tears at my desk already. Luckily, no one has caught me. I feel awful. Both physically and mentally. I want to fix things, but I don't even know where to start any more I feel so tired...

---

The day before my wedding was a weird one. We pretty much had everything under control, I just needed two things from town before heading off for my massage which I had booked – a bit of a treat for my achey body. I got the jobs done, grabbed a coffee and got into the car, which was parked in a car park that was partly a building site at the time. I put the keys in the ignition, and the radio came on. Radio one were airing a live special recording of a Coldplay concert.

When you try your best, but you don't succeed
When you get what you want, but not what you need
When you feel so tired, but you can't sleep
Stuck in reverse

Suddenly, it all hit me. All those months of planning and sorting and doing and focussing on the bigger goal, and it was all done. All ready. That was it. I’d like to think it was a big wave of relief, but I don’t really think it was. I think that I had been putting all my energies into the wedding, and had totally and utterly ignored how I had been feeling.

And the tears come streaming down your face
When you lose something you can't replace
When you love someone, but it goes to waste
Could it be worse?

And, with all the builders looking on at the tall redhead in the swanky soft top, I cried. The tears started falling and I couldn’t stop them. It wasn’t like a huge, sobbing crying, but it was totally uncontrollable. I felt like someone had died almost – like this was the end of me, and my body had betrayed me, and I was never going back to being the girl dancing in revolutions on her own, twinkling and flirting – and part of me didn’t want the last bit particularly but I wanted to be able to – and I wasn’t. And I was never going to have that freedom again that comes with being single – the freedom to pick and choose what to do totally and utterly selfishly; to eat porridge for tea because you can’t be bothered to cook, and to spend money on whatever the hell I wanted once the bills were paid. None of this was actually changing – things had been this way for years. And it wasn’t really that side of it that was bothering me, looking back. I mean, I think I did have a little grieving process about getting married – it is, after all, moving from one passage of your life into another – like leaving school – you’re excited about uni but sad and scared to leave the safety of home behind…

Lights will guide you home
And ignite your bones
And I will try to fix you

More of it though, I think, was to do with my body. I got this weird achey tiredness and the pain and confusion that went with it not long after we got engaged, really, looking back. More precisely, I’d been having low grade episodes for years – even at uni I had what I can now see was a massive flare up of it all. Sometimes it does feel like bright white hot beams of pain inside my bones. Sometimes it’s just like being so tired that you feel drunk. I have – and had – become increasingly useless to my mind (though not to others) and pointless. The wedding was about the only thing holding me together – at no point had I thought past “as long as I can make it to/through the wedding/honeymoon”…

And through it all, Dave has loved me, and wanted to fix me.

And high up above or down below
When you're too in love to let it go
But if you never try you'll never know
Just what you're worth

He doesn’t care that I can’t always manage a staircase – he loves me - not the casing. Though he thinks the casing is pretty foxy. I can see that it drives him mad to not be able to fix me. He hates that I hurt, and that I get so worn out, and I often think that it must be worse, almost, to see the one you love beyond all others in pain. When I try and turn the tables and imagine him with this, it’s heartbreaking. I still cannot imagine that I deserve a man so good to me, so clever and handsome and caring – that I could possibly deserve this much.

Lights will guide you home
And ignite your bones
And I will try to fix you

But the thing that kills me – and I had no idea at the time – organising the wedding was this awesome time of discovery. Of learning who we, the couple were – and, for me, learning who I was. I’d always just been who people wanted me to be, knowing that it wasn’t really me and feeling uncomfortable with it underneath, deep in my subconscious. But the wedding suddenly shone this big light on it, and let me be the creative, colourful, slightly eccentric person that I’d always been hiding underneath. I came out of my shell and basked, briefly in the glow of it all, knowing that I was safe in the love of my other half and whatever I did would be accepted on the day because no one causes that big a deal on someone’s wedding day if they think she is wearing a funny hat, you know?

Tears stream down on your face
When you lose something you cannot replace
Tears stream down on your face
And on your face I...

So who am I now? Somehow I am too tired, without a big goal, to continue to wear the hat, and in too much pain to do much more than keep the housework up to date and make everyone’s tea and ferry all these people around when I can. I have no independent means of transport (and shanks pony is unreliable). I am coming to terms with the idea that I will never be a lighting designer up a ladder again, or dance the night away without paying the price horribly the next day. I think I’m getting round to mourning my health these days, and to the realisation that somewhere in all this – this becoming involved with Dave, and the kids, and my body giving up on being good - I have lost me. And it makes me sad.

Tears stream down on your face
I promise you I will learn from my mistakes
Tears stream down on your face
And on your face I...

And I think I’ve realised that I need to sort it out, and actually do something about it and find me again somewhere in all of this mess before it all gets too late and I’ve screwed things up. Because I do not want to screw things up. I want things to be brilliant, and I want to live my life, not exist it. And I know that this is something that I need to do myself, not that anyone else can do for me. Because as much as others want to fix me, and I want to be fixed, there is only one person who can turn this grey fog around into something better – and that is me. I don’t know where to start at the moment, and I’m feeling all a bit lost and confused and muddled, but I know that I want to start, and that is a lot closer than I’ve been for a long while.

Lights will guide you home
And ignite your bones
And I will try to fix you

PS: If you’ve never heard this song – click here