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21 December 2011 @ 12:16 am
Have had the most incredibly busy day.
I'm off to dad's early tomorrow, and having been busy for three days (one day visiting SJ and Paul, one day having a little xmas party with Best Friend and Favourite Toddler, and yesterday at work), i'd unintentionally managed to save LOADS of things to do today - laundry, packing, cleaning the house (landlord is coming for an inspection on friday... eek), haircut, opticians, a doctors appointment, dyeing my hair, underwear shopping, covering up my bike, and going to the pharmacy. And then this evening dad arrived up here and we went out for dinner at Zizzi's (YUM!).

On sunday we gave Favourite Toddler his xmas presents. He's getting so many that his mum let him open his ones from me and Si early, so that he's not totally overwhelmed on xmas itself. It was awesome! His comprehension and language has developed to such an extent that he knows what's going on and can communicate with you. He knew what the presents were and how to unwrap them, and he even talked to us as he did! "A bus?! For me?! From Simee?! Oh, WOW!!! Thankoo Si-Si!!!". (Simee is one of his many names for Simon, along with Si-Si, Si, Si-man, man, and daddy....[?!]). I got him this car-garage, and Simon got him a little bus and a lorry. The adorable thing would be that FT would wander off and be distracted, and then see his presents and get all excited, "car wash! Bus! For ME!?!". Unfortunately he decided that all other presents going between me, Simon and BF were his too, so we had to hide them before he toddled off to unwrap them announcing "for ME!".

I am really impressed by my opticians. My glasses had become all bent out of shape after repeated accidents (being headbutted by a tantrumming FT, excited Trixie and Ethel jumping on my head, faints, being punched by Emmy, etc) over the past couple of years, so i went in to see if they could help. And with no charge or hassle (it didn't matter that my warranty had expired or anything) they tightened the screws, bent them back into shape, and gave me new more-flexible nose-rest-bits.

My shoulder still hasn't healed properly. I've been waking up in the night with it swollen and hot and painful, particularly when i roll over and sleep on it, so i went to the doctor. He looked horrified at the sight of it! Clearly when he'd stitched it it had all been neatly-together, but now it's massive after splitting when the stitches were out. And it's a keloid. I've had plenty of hypertrophic scars before, but never a keloid.
Still a mystery why i wake up with it hot and red and swollen though. All my doctor was bothered about was how unsightly it is; i don't care... i just want it to be comfortable.
14 December 2011 @ 12:30 pm
Recently me and Simon have been watching The Food Hospital. I've been quite enjoying it, apart from the self-satisfied and slightly creepy doctors and dietitians/nutritionists (why are they always weird on TV...?!). It's nice to think that maybe if you have a health problem you have some control over it. However what REALLY bugs me is that they often have someone who has a health issue they intend to solve with food, but then they get distracted by some other health issue the person has, so if you're watching because you're interested in solving that particular condition, you're left disappointed. Like first there was the eczema sufferer, but they deemed his eczema to be due to his obesity, so they refocused their attention onto his weight. Same went for a guy with bloating - though they did vaguely mention you should avoid apples, bread, beans and cabbage (not useful...). AND the same for a woman with CFS/ME - she had a miraculous improvement in symptoms when she stopped skipping meals; not much use for us regularly-eating CFS/ME sufferers.

I am also totally confused by some things, like:
- wheat - good or bad for you?? The way some people talk you'd think that a bowl of pasta made you gain 100lbs in 10 seconds. And is fresh egg pasta better for you than normal pasta?
- dairy - good or bad for you?? The medical community say it's good. But in some ways eating dairy just doesn't make sense.
- sugar in fruits - does it raise your blood sugar?? Or does it raise blood sugar, but not as much as 'normal' sugar? I've seen reliable sources saying that fruit sugar does AND doesn't affect blood sugar levels, so i'm very confused. The NHS tends to tell diabetics are told to avoid grapes, fruit juice and ripe bananas because of the high sugar content.

I'm so confused by everything i end up feeling guilty for everything i eat.

Sometimes i wish i hadn't recovered so effectively from AN/BN. I worked really hard to change my thought processes - making "bad foods" seem acceptable, and making links in my mind between eating and energy, eating and health. However having gained weight these new thought processes are unhelpful. I have less energy now i've gained weight - unsurprising because 4/5 stone is like carrying two toddlers around with you all the time - but the low energy means i want to eat more to replenish it! And i probably do need to start viewing some foods (eg chocolate, cake, etc) as "bad" again so that i don't eat them as much. *Sigh*
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12 December 2011 @ 11:17 pm
I'm a little bit pissed off because i got home this evening to find a house-key in the lock on the front door... on the outside. I took it in and found the housemate who it belonged to... "oh, thanks, i thought i might have left it there"... well why didn't you bloody get it then?!
And there's another housemate who keeps leaving the back door unlocked.

Only last weekend our house had an intruder. No-one knows how he got in, but we think something might have caught in the front door so it didn't quite latch properly. It was late at night and the guy was drunk. He stumbled round our house trying to get into the bedrooms, and we think he got our house mixed up with someone elses because one of my housemates spoke to him as he left and he asked "do you know where Sol is?" Think i got the wrong house...".
Obviously we were really lucky that our intruder wasn't more sinister.

I get really upset about this kinda thing after my last house. We had people come into our house uninvited SO often, and it was so threatening. One morning i got up to find the TV had gone. And there was the gang of blokes who just came into our house and hung out as though it was theirs... typically with their stock of alcohol and drugs on hand. There's nothing quite like coming back from the shower in just your towel to find a huddle of random blokes snorting ~something~ off your coffee table who then turn your attention to telling you what they'd do if you didn't have the towel on *shudders*. Plus all the other stuff that was stolen (you know you've reached a lot point when you have to keep ALL your kitchen utensils locked in your bedroom). And the times blokes who let themselves in and attacked us. And when i spoke up and threatened to talk to the police and stuff about what was going on and the people involved called an ambulance and told them i was psychotic, and i was taken away against my will, screaming (fortunately the front door was still open when i got back from A&E.... when you're taken away under threat of section you don't really have time to collect your keys, your phone, your coat, or even your shoes... i came back in my slippers). Etc, etc.
Obviously the above examples are kinda extreme and i don't actually expect anything like that to happen living here in a 'normal' house, but of course i am now paranoid about our house being secure. I nearly had a panic attack when i saw the keys left in the door... it was that bad.

Am i over-reacting?? I feel like i need to speak up about this to the others, but i don't want to sound deranged!
11 December 2011 @ 11:24 pm
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08 December 2011 @ 12:47 pm
Hmm, well.

Today i went for my interview at HH. Am unsure if it went well or not. Two full days work is a big jump, and i'm scared in case i'm jumping in too deep. I explained my concerns, and next tuesday i'm going in for just an afternoon to try it out, and the manager will phone me on friday and see what i think. In the meantime i could phone Shelley (ME lady) and see what she thinks.
The cafe where i'd be working is really nice. It's a bit hippy/alternative with lots of stuff for special diets, everything is homemade, it's good value, there's second-hand books and stuff for sale, and local artwork for sale on the walls. Plus, anywhere that has 7+ flavoured coffee syrups is cool for me!

Last night we went to see My Week With Marilyn. It was good. Simon really loved it. I can't quite make up my mind about it, mainly because i find Marilyn Monroe (well, my idea of her) irritating - partly because she seemed so superficial, partly because everyone goes/went gooey over her beauty (*snore*), and partly because her mental-health-fail reminds me of all the things i hate about my own mental-health-fail. That probably sounds weird. Ah well.

I had a dream the other night in which my mum was actually dead. FINALLY after 5 1/2 years has my unconscious mind seems to have accepted my mums death, maybe?! Every dream i've had for the past 5 years has been set in the past (2004-2007 kinda time) - featuring my immediate family, college/school, my part-time job, the town i lived in... and the only nods to the present have been the occasional person from my life now transported into that setting, or the knowledge that i am 24 years old. Weird as anything. I'm sure there must be some psychological significance that my unconscious mind seems to be completely jammed at that point in time...?

Am currently filled with some weight-related angst. I've got to wear black on tuesday, so i tried on my smart black trousers. I'd bought these trousers a year or so ago thinking they were impossibly big and thinking i'd only need to wear them temporarily til i slimmed back into more reasonably-sized ones. Of course, now these 'fat trousers' are teeny on me, and if i do manage to do them up my ginormous gut spills over them in the most hideous way. Suppose i need to go shopping for new black trousers and top...eugh :( 
On the plus side, i have maintained my weight for the past few weeks, even if that weight is actually horrific to me.

Cold no. 5 has cleared away and i'm slowly getting back to 'normal'. Instead i've now got a big IBS flare-up, and the cold has brought on a flare-up of eczema and the extra clothes i'm wearing has brought up lots of rashes from all the different fabrics. Add to that some new stretchmarks (i'm guessing with my skin being more dry it's more vulnerable to stretchmarks?), and my skin looks diseased. Bleugh.
I've been drinking more milk recently (in the form of hot chocolate) so i've replaced it with rice milk, with the theory that that's easier on your stomach. I'm surprised by how nice rice milk is!

I've finished all my xmas shopping, and actually have enough money left over to pay my rent tomorrow AND have enough leftover to eat and stuff for the rest of the week. Hurrah! Less than two weeks until i go to my dads for xmas, and it's two weeks today that Emmy arrives home from Italy. You can tell we haven't seen eachother or spoken to eachother much because we're looking forward to seeing eachother and EVERYTHING. Obvs this won't last once we're back in eachothers company, but it's nice while it lasts.
03 December 2011 @ 09:34 pm
When I was: 16.

I was dating: Well, i was about to snort derisively at this, because 16-year-old Josie was SO fucked up that dating was an almost-impossibility, but in actuality i gained a boyfriend about a week before my 17th birthday. A couple of weeks before i'd been at my best friends house after (6th form) college, eating chocolate fondue made over a candle in her den, and she borrowed my phone to prank-text one of her friends at her 6th form. Later on when i was home he texted back asking who it was and i texted back, and we started chatting by text. Fast-forward 2 weeks and he invited me to a house party which my best friend was going to too. It was my first house party, first alcohol (all those alcopops - bacardi breezers, hideous blue WKDs, smirfnoff ice....), and first drunken getting-together-with-a-guy. I was over the moon. I'd convinced myself that i was hideous and would never ever get a boyfriend (as that's what the pretty popular girls at school did.... not people like me). Unfortunately 2 weeks later he dumped me, and i was heartbroken. I came home in tears, my dad (who didn't know why i was upset, but i guess he may have guessed) made me a microwave pizza, and i wallowed in my room crying to Avril Lavigne and eating my bodyweight in chocolate.

I wanted to be: An artist, or a nurse. At the beginning of being 16 it was artist, as that has been my default for basically my entire life. But about a week after my 16th birthday i was admitted to the childrens ward with a chest infection, and a couple of the nurses there really inspired me. I had a tough time throughout my first night in hospital - i'd never been seriously ill before, and now i was being left in this massive hospital, miles away from home, being kept awake at night by screaming babies in the nursery down the hall - but a couple of the nurses made me feel a lot better about it all. About a year later i figured i was probably not cut out for nursing, after a spell of work experience made me realise how socially inept i really am, and to be a nurse your communication skills need to be spot-on, but it's been something that's been on my mind since then, even despite coming across a huge number of bad nurses - including in my next hospital admittance where nurses held me down with a paper bag over my face because i had 'panic attacks' in my notes, while i watched my fingers go blue with oxygen deprivation, and as i started to get that fading feeling one of them gave me the most hellishly vicious sternum rub to bring me back (ow ow ow OUCH, bitch). 

I was living: At home with mum, dad (mostly. He worked abroad a lot) and Emmy. Well, i was for the first half of being 16, the second half minus mum most of the time as she was in hospital for almost 5 months straight having intensive chemo. When mum got ill it was almost like swapping one parent for another - we'd not really seen all that much of my dad throughout our childhood because he worked such long hours, but when mum got ill he stopped travelling and worked from home. It was especially bizarre for me because me and mum had been practically glued together for the past few months due to me being ill - i was so f*cked she often had to come to school with me (absolutely mortifying as a 16-year-old of course!), i was excluded from school twice, i wasn't allowed out places without her or someone else trusted (just in case i had epilepsy or something. I knew i didn't, so the lack of freedom mad me SO MAD), i was constantly at OP appointments (i went to six different hospitals that year alone...), and she even had to sit in on my GCSEs.

Oh gosh, how depressing! Being 16 was particularly mad. It was when i first got ill and my life turned upside down. And itt was when mum first got ill, and our whole family turned upside down. And on the plus side - I left school and went to college. And it was when i got my first job. Being that kindof age is full of so many 'first's.
01 December 2011 @ 11:38 am
Last night we went to see We Need To Talk About Kevin (it is in our cinema AT LAST!). It was good. I feel that it's a very good adaptation of the book, but it probably works better as a book than a film because the big twist at the end of the story is predictable in the film, and emotions can't be conveyed as well in a film as well as a book (and really, it's the main characters ruminations over events that make up the whole story). I thought the actress of Eva (the main character) was a brilliant choice. I'd also say that it dragged a little bit, and the main action could have been shown more, to show the full horror of what happened.

And when i got back from the cinema i finished a book!!! I find i still need to attach exclamation marks to this fact - i've read 15 books in the past 8 months (which compared to xanantha's 17 books in just this month is a bit paltry! But then i don't know how someone so busy reads that much!!) - but i'm still so delighted with being able to read again that i can't get over the excitement. When i first got ill at age 18 (depression and ME/CFS) i stopped being able to read; quite literally the words swam in front of my eyes, and by the time i'd got from the beginning of a sentence to the end i'd forgotten the beginning, and nothing ever made any sense, like my mind was clagged with cotton wool. It was really frightening, and depressing too since i'd always been a voracious reader. And obviously not good during my A Levels - my grades dropped from B's to F's within a few weeks. I went for nearly two years not really reading, apart from some blogs (well, i lived on LJ when i was near bed-bound) and magazines, but i ended up skipping any paragraph that was too big and daunting. And then i was able to read again for a bit when i was 20 when i was at art college, but then i relapsed big-time in every way and couldn't read any more. And it's only in the past year or so that i've started to get better again.
Anyway, i read Started Early, Took my Dog by Kate Atkinson. Atkinson is now my favourite author! It was really good. Maybe not quite as good as One Good Turn because it wasn't quite so complex and unpredictable. But still highly recommended. All of Atkinson's books are on my wishlist now!

Quite excited for the next couple of days. Me and Si have got a voucher and scraped some money together so we're going out for dinner! Pizza Express; the restaurant here in Lincoln is special to us because we went there for a really long meal when i first moved back to Lincoln two years ago, and we stayed there to avoid going back to the shithole where i was living, and we'd not seen eachother for quite a while because i'd been staying at dads. And this evening we're going to Lincoln's Christmas Market! Our xmas market was the first German-style market in the UK, and it's one of the biggest still. And then tomorrow night we're going to Simon's parents for the weekend - they've been away visiting family in the USA for the past two weeks, so we've not seen them or Trixie for ages! 
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24 November 2011 @ 12:44 pm
This morning i was at the CAB at stupid o clock so an advisor could do my work capability assessment.
Needless to say, it was a special type of hideous.
The advisors tactic was to look through the areas where you score points (you need 15 points or more to be deemed broken enough to get ESA) and decide which i fitted and write about those areas the most. Obviously we pretty much drew blank because tiredness, hypersomnia, pain, poor concentration, etc etc apparently don't inhibit your ability to work full-time at all *headdesk*.
I'll almost definitely be going to a medical assessment. I'd rather eat my own faeces than go to another one of those*.

The form is done now though. Thank goodness.
I went and comfort-bought myself some bedsocks to make me feel better. My temperature control seems to be getting even worse, to the extent that i've more-or-less given up on using the radiator in my room - it's easier to warm myself up if i'm cold than cool down if i'm hot, so i'm looking into getting some 'warming-up stuff' - socks, gloves, hot water bottles, blankets, etc. I've then also got 'cooling-down stuff' - a fan, water-spritzers, etc. Wish my body would do the job itself though..

I also got the local newspaper. That made me feel more depressed! It all seemed to be about funding cuts. The one that bothered me the most was Mind - the day centres and stuff have lost ALL their funding and have closed. It's things like that that really scare me - all the little safety nets i've had available for if stuff gets Really Bad seem to be disappearing.
And then there was some mental health awards - and the overall winner was my former CPN. The phrases "genuine desire to help", "the best CPN ever", and "her support helps me live a more normal life" came up. I feel a bit confused and non-plussed. This was the woman whose appointments i always went away from in tears, who alternated between accusing my dad of being a bad parent and "just the average man who doesn't do emotions", who kept saying she didn't know how to help me, and whose only advice seemed to be "go for a walk when you're tired". If she was such a good CPN then what went wrong with me and her?! The only conclusion i seem to have is that there was 'something wrong' with me. Like, did she really dislike me or something? Idk.

I'm feeling really upset about everything. I wish i never had to think about my health or benefits EVER AGAIN. As it is, it seems to be ALL i think about, the anxiety and confusion of it all cycling round my head.
I really hate my life. I wish i knew how to change it, but i feel so trapped.

*K, slight exaggeration. Only "slight" though..

23 November 2011 @ 08:55 pm
Feeling a bit better.

Mainly thanks to....

.... Favourite Toddler. You can't really stay miserable when you're with an excitable two-year-old.
It's only been 2 weeks since i last saw him, but he's learnt LOADS of new words. "Teacup" is my personal favourite. There's also please and thankyou ("pwease" and "thankooo"), which are quite useful! And after a phase of simply calling Simon "Man", he's now moved onto "Si" or "Si Si" and sometimes "Si-marr" which is cool.

 The weather was clearer today - it's been so foggy and dark for days, but today it's been lighter with the occasional little glimmer of sunshine.
We went out and i've been sorting out Simon's xmas shopping. I quite enjoy xmas shopping apart from the stress of it - and obvs it not being my xmas shopping meant there wasn't the stress element to it! And i've done the wrapping too - i like wrapping presents.

I've just made a lasagne. Lasagne is my speciality.
17 November 2011 @ 10:01 am

We saw The Help last night. It was pretty good; inspiring.
I really REALLY want to see We Need To Talk About Kevin. It's not been on here, or at Newark, Boston or Peterborough. I'm really disappointed. It's been nearly a month since it was released, so i'm not holding out much hope :(

My shoulder has finally healed enough for me to go out on my bike again! I've not gone far because my energy levels are crap. Only to town to do my xmas shopping, which all fitted easily into my beautiful new panniers! All my xmas shopping is now done, apart from Simon's parents, SJ & Paul, and Simon. Simon's parents are hard to get presents for because they have expensive taste! Usually i do them a painting, but their bungalow is FULL of them now. SJ & Paul would like some artwork for their new house, but i am stuck for ideas; they want something to go on a wall which is a particular shade of green (v difficult), and i don't know their taste! 

Seem to be coming down with a cold. Again. The fourth in two months.
I miss the days when a cold literally meant you felt a bit rotten for a few days, and maybe if it was truly horrendously awful you might have one day off school. Combine a cold with CFS/ME though and it means feeling really ill, it's a bad idea to go out by yourself because you're likely to faint, you're going to miss big lumps of time because you'll be asleep All The Damn Time, and you need to look at your diary and reschedule things because your ability to do 'high energy activities' (eg, a shift at work, grocery shopping, cooking a proper meal, Rainbows, housework) is massively reduced - you can probably only do one a day (if any at all), so you have to prioritise.
With all the pacing stuff i've learnt to keep my energy levels on a fairly even keel myself. So when something uncontrollable like a cold comes along it throws you because you're not in control anymore. Stress and depressed moods are also major triggers, but even they're more avoidable than a cold!!

In 3 months i've had 5 colds, the boils-from-hell, a stomach bug, and been on two lots of anti-biotics (which brought on thrush). Have got to conclude my immune system isn't too happy. Normally i'd think anaemia, but i don't look anaemic - i can usually tell because my lips go really pale. Maybe i should go get checked anyway. 

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