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)

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.

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….