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!

Whistle a Happy Tune

I’ve been aware for many years now, long before I got ill, that I present a different front, a different personality to different groups of friends, colleagues, professionals. It’s easy to be who they want me to be because being myself has never worked smoothly, and because the different groups are so different and I take care to not let them cross this has always been fairly easy to maintain (apart from at large parties, where I used to just get tired!)

Of late though, it’s become increasingly clear that I’ve got more and more of my game face on to the world, full stop. I appear to be functioning well outside my home, my colleagues have no idea how much pain I am in on a day to day basis, or how off my head I am on opiate based painkillers (probably for the best that) some of the time. More alarmingly recently was when I discovered that my friends DIDN’T REALISE that I was in pain, all the time. They thought maybe I was a bit achey now and again. One of them told me I should just man up and get on with it, before I told him exactly how much pain I have been for how long. I’ve forgotten how it feels to not be in pain.

They had no idea.

I juggle work and a complicated home life, and I keep going and I am afraid to let my guard down. I can’t let other people see that I am like a swan, gliding along the surface with my flippers going like buggery underneath. I can’t let anyone see, because one of the people I am fooling with this maestro performance is myself. I can’t give up this appearance and let the whole thing go, because if I do, it might start to actually slide. Underneath is a girl desperate to stop, to curl up under a blanket, to sleep and rest and take time for herself, to cry and wail and eat nothing but custard, biscuits and coffee. That can’t happen, so I will continue, as Anna in the King and I, to Whistle a Happy Tune.


Make believe you’re brave
And the trick wil take you far
You can be a brave
As you make believe you are

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.

Summer Sun, Something's Begun...

Spurred on by the latest chronic babe blog carnival prompt, I’ve been thinking about my plans for the summer. Mostly I’d like to be more organised, but there are too many external factors for that I think!

Generally of late though, I’ve been feeling the need to try and spring clean. Not particularly my house (I gave up on that sort of thing some time ago) but my life and my mind.

It started when I started to think about cutting my hours at work from five days a week to four – I realised that I couldn’t carry on the way I had been, which necessitated a change in the way that I was thinking. I need to unstick some of the patterns in my head that were/are stuck going round in a big negative whirl – all the stuff about not being good enough and not achieving and the frustration that comes with that because I’m not acknowledging me, now. My mind is stuck 10 years ago in some weird place I didn’t like at the time, and still don’t!

So my tentative plan for this summer is to be nice to me. To be gentle to myself – but also to try and stand up a bit more for what I would like, and what is helpful to me and my health. Constantly rolling over because I don’t want a fight conserves energy in the short term but makes me feel pretty rubbish longer term and that isn’t helping, given that often I end up doing things I know I don’t have enough spoons for, and that stress makes my health worse!

So to that end, I have developed a little plan. A little list of things that I’m going to start doing that should hopefully put me on the path to feeling better about stuff.

1) I am going to find as many vouchers as I can for spas - and use the things. There’s nothing like complete relaxation and sitting very still for a bit to make all the bad things float away.

2) I am going to start trying to be more aware of my thoughts and my feelings about things. If I can notice when I start to think the weird things, perhaps I will be on the route to stopping thinking them!

3) I am going to investigate, sign up to and start going to a Pilates class. The physio says I should. The OT says it might help. The WW ladies think so too, from a different angle. Everyone says that it will be good for me, but I’ve been resisting ages now and I don’t really know why. It is a silly fear and I should just get on with it!

4) I will chase (and hopefully get) my appointment with the geneticist. Tired of having half a label that may not be mine now, I want to go back to knowing one thing or another.

5) I am going to make Dave and the kids understand the difference between “on” and “in” the dishwasher. It’s so close and it makes such a difference!

6) I am going to enjoy my holiday to Cornwall and I am going to breathe in the cold (I live in England!) salty air on the coast, and it will fix me. It will feel like going home and the crashing of the waves will make me feel peaceful inside. I will sunbathe in coats under blankets, and introduce the kids to hedgehog ice creams (Imagine an ice cream cone with Cornish clotted cream ice cream, smothered in clotted cream, rolled in hazelnuts. Heart attack territory, but the best thing you’ve ever eaten!). I will sneakily drink from the stream that I’m not supposed to because it tastes of childhood holidays. I will have baths and let Dave cook. I will take piles of books with me that I will fall asleep half way through. I will, in short, relax.

7) I will also clean my fridge. Small things.

I’ve just realised what a really random list that is – back and forth all over the place. Mostly though, I’m going to try to be happier, and as healthy as I can be.

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.