"Hüte dich, fürchte dich"

Many years ago, I used to work for the University of London, at a rambling old suite of buildings that had a very old and reliable-yet-temperamental boiler. Because the administration was of the old-school, we still had people like Porters and so on and we also had a Fitter and a Fitter's Mate, who were responsible for keeping 'the old girl' (as they called her) going. Through the winter, they were outside the boiler-room in the darkness at 0600h drinking their tea and smoking their cigarettes and preparing to get the 'old girl' going for the day. I'm not entirely convinced they were even paid to come in that early but did so out of loyalty to not just the staff and students but 'the old girl' herself - they took an enormous sense of pride in getting her going every day, including every few months, the Fitter's Mate used to vanish through the floorboards of the Hall and would spend hours crawling about messing with valves that had to basically be adjusted with the seasons. I went down there once myself for a nose and it was much as I imagine the steering flat of the Titanic must've looked!

My body has a Fitter's Mate too, who keeps me upright, moving and able to do my job and have a life no matter what the weather. He's my physiotherapist, J. Last night I saw him and he released a lot of muscle tension and pain around my left shoulder which is now at the stage at which it dislocates in my sleep and quite often several times during the day. It's frustrating and frustratingly painful. Thankfully, I have someone capable of just keeping me going, no matter what the weather or what life throws at me. Besides, it's oddly cathartic having someone to talk about absolute nonsense to every few weeks - everything from which flavour of Calpol tastes better through to baby sloths hugging kittens.

It's also quite cathartic writing this blabber every day. Why do I do it? Well, the original reason was that I wanted to start food-blogging - which is kind of now more important since I've decided to try the whole "eat stuff from a different country for a week" a few times a month...but now I'm enjoying just writing any old crap to be honest. Why not, after all?! 

"...bleibt oft mit seinem Schmerz allein..."

I thought I was exhausted the other day. I'm far more exhausted today. I'm fast reaching the end of my line in terms of being able to control pain/fatigue and it's made me realise how much I've declined since the last time I had to move house. Making the decision to move from Grey Gardens (a rather grand 1830s townhouse in a Georgian square with a church in the middle; 3 stories and attic; lounge, parlour; two guest rooms; guest bathroom; kitchen; master bedroom; master bathroom with shower and separate roll-top bath; roof terrace, yard and attic split into storage and a small meditation/thought room, as I've used it, with views out over Cornwall) to a smaller home wasn't an easy one. My first instinct when The Major told me he was selling up was to find somewhere equivalent to it in layout, scale, age and so-on. I then started looking at duplex apartments - I've never done the 'yuppie flat' thing and I kind of liked the idea. Found a perfect flat very close to work but it was furnished and the landlord would not budge on that and then I found a perfect one in terms of size and price but way out in Devonport and the trains just weren't convenient for work. This catalysed me to find somewhere ground-floor, with wheelchair access 'just in case' as I simply don't know what the future is going to hold in that regard. I want to stay on two three (stick in right hand) legs as long as I can - my intention always was to stay using a stick until I physically could no longer walk but I've read more and more about the prognosis of Ehlers-Danlos syndrome of late and found many patients move to using a chair when they get to the stage that their pain levels just get impossible to handle every single day - and whilst I can handle extreme pain, handling it day in, day out is not the easiest thing in the world. In fact, I've now gotten to the stage that the pain is so frequent, so severe and so unrelentingly just there that I'm now just so very, very tired all of the time - tired, niggley, grizzly - and just so slow - it takes me so long to think over even basic stuff now - I can blame the drugs for some of that though. Max-ing all my doses at the moment just to get through the day. So, in all, it's making me start to consider wheels happening at some point in the next 5 years or even closer - maybe must sooner for certain days, perhaps.

I was woken the night before last at 0400h by the worst asthma attack I've had in years - catalysed by some aspiration of stomach contents into my lungs during my sleep, I think. My body does this now and again but I can't seem to determine why or predict it, annoyingly. Probably another symptom of exhaustion.

I'm starting to formulate a plan as part of my 'going to cook properly' plan after I move... Starting to make sense to me gradually as a means to motivate myself... More soon...!

I'm quite seriously in love with Joseph by Joseph at the moment - I've only discovered them lately but finally found a range of ergonomic, disability-friendly kitchenware - this not only excites me enormously but may actually allow me to cook properly again. Prior to them making such things, it was just the "special" aisle in Boots's [Boots's who refused to dispense my medication into bottles with non-childproof caps on Saturday - really unaccommodating and was it not for another pharmacy being willing to put it all into new containers for me, I would not be able to take my medication].

Basic tasks like crushing garlic, straining pasta and mashing potatoes and so on are really hard for me to do on bad days but I think Joseph by Joseph is a solution...watch this space!

In other news, I have finally managed to get in contact with my cousin once removed after 6 months of trying to track her down!

"Nichts bleibt da, wo es war, von dem ganzen Inventar"

More cleaning. More moving of shit. And a lot of trying to get candle soot off of paintwork - not easy but white vinegar, ammonia, washing soda and dishwasher tablets mixed together seems to be helping a bit.

Sad day today - I came down this morning to find Jack and Frederick unusually anxious-looking and then discovered Daniel dead in his nest. Can't work out how he died but it was 2-3 days ago as he was starting to smell but he looked like he was just fast asleep, bless him. Toby is very restless now, searching for his mate. Poor lamb. Took Harry a good month to cope with Billy dying.

"Schlägt das Geschirr in Papier und passt auf in den Kisten ist das Glas!"

20th move in 20 years.

I'm exhausted - I've said that a lot lately but really I am. I've had to throw money at some of the bottlenecks and issues and I've finally decided to stop dicking about with an uncomfortable armchair that's grotty and about 30 years old (got it from  my old landlady for £10!) and going for a sofa which arrives next month - it doubles as a single-bed (futon) which will really help me with working from home as being able to lie flat really helps my spinal pain at times.

The biggest pain of the last few days has been the Department for Work and Pensions (DWP) who have just been a nightmare of "we're not allowed to do X" and "we work 0900-1700h and no, your working hours as one of our paying customers don't matter - you do what we say" totalitarian bureaucracy. Kicking back is hard to do when you use most of your energy handling pain and getting through the day but I feel I have to - not just for me but for all the others that are almost daily reporting equally botched ATOS "assessments" as mine - a few highlights of mine:

• Balance test showed I had poor balance - no balance test was done!
• I can "walk unaided" more than 200m - I can't walk at all unaided...!
• Being told I can't include something as "normal people get that too" - I'm not sure how being disabled isn't "normal" but hey ho.

It's all going into a lengthy formal complaint of course but due process first and we'll see how it goes. It's a very, very slow process and things seem to sit in bottlenecks a lot but right now I don't really have time to be angry at it all.

Tomorrow I have a really big day at work so I'm going to wash another skirting board and scrub my troubles away ;)

"Du glaubst an ihn, wenn er zweifelt an sich"

I'm exhausted. I know when this happens - my neck gives up first and it has. I could not wash my hair this morning as it was so bad. I lay in bed and read about Tom's budgie smugglers instead. And then I felt a bit sick to be honest. Lots of busy meetings today and a few major bits and pieces that had to be dealt with - and a truckload of emails to do this weekend, of course. But for now, I need to turn my mind away from work for a few days I think.

Oddly, my quest for my Great Grandfather is no more - I have found him. Here he is:

It didn't take long to find him, once I knew where to find him - and he was exactly as we thought him to be in terms of his life and the records with this photo. It's not a mugshot, incidentally, it's his Merchant Navy ID card photo from about 1920 - before the beard, evidently.

Had some very flattering comments from my final year students on their end of module feedback forms yesterday, which is always nice to have but I'm really pleased how this module panned out - the first one I've built from the ground up. Some quite cheeky bits of feedback too which made me laugh.

I got through the day to find I had chewing gum on my jeans from the bloody pub table so they're in the freezer now. I need about a month of sleep, it feels. But two weeks today, the Haus Am Meer will be in my hand - or at least the keys will be. Finally.

"Wir finden Stärke in Gefahr und Hoffnung in schwerer Zeit"

Side-effect of days of trains and buses and awful squishy hotel beds is that my back and left leg are worst they've been in ages. Ironically, I woke up to a letter (sent almost 2 weeks ago, 2nd class) from the DWP telling me I was rejected from my Personal Independence Payment claim - like so very many people - thanks to ATOS Healthcare's botched "assessment" of me really not reflecting reality. The report enclosed proudly claimed that as I could walk 200m unaided, I did not warrant support - anyone who's ever met me for more than 30s knows that this is utter nonsense. I somehow scored very highly on the "Care" component but almost nothing in "Mobility" when the bulk of my disability is a mobility impairment. I've been in the system since August 2013 for this - it's now 8 months later and I've been told "reconsideration" will take another 2 months and if I'm still rejected, appealing could take it over the 12 month mark - but I'm going to keep pushing because I want to be considered properly from a proper report backed up by medical evidence - none of my supporting referees (my physiotherapist, my GP, my rheumatologist, my pain consultant, my neurophysiologist, my GI specialist, my cardiologist, my maxillo-facial surgeon...and so on) were contacted - not one (I've phoned them all and checked) - the whole decision was made based on non-medical judgements done by someone who seemed extremely ill-informed regarding my condition and who wasn't writing down half of what I was telling them. Even things I said "you must put this down, it's important"  before saying were not included in the final report. Good thing I have an audio recording of the whole thing really... I was very open on Twitter minutes after the "assessment" in January that it was a farce, rushed, shallow and generally nonsensical and that it ignored the bulk of my mobility issues so that kind of correlates with the report they made to the DWP. Apparently I did show poor balance in a "balance assessment" - my balance wasn't assessed at any stage - I wasn't made to do more than stand up from a chair and hold my arms in front of me whilst seated, which the average 5 year old will tell you does not show balance.

In other news, I've decided that Pizza Hut and Dominos are now having a "The Aristocrats"-style war as to who can come up with the dirtiest pizza in the UK - we've had cheese-in-crust, mini-hotdogs in crust, giant hotdog through whole crust, mini-burgers in crust and now mini-bacon-topped-cheeseburgers in crust! I rarely have take-out pizza but as I got home so late last night with the trains being a mess still and had no bloody food in the house, I went with a pizza that I made last two days to make the price justifiable - £20 for one meal is just insane, otherwise. Was it nice? Vegetable supreme pizza with mini cheeseburgers - yes, filthy. It was just that - carbs, fat, MSG, little flavour. I needed it.

"Unser Zuhaus ist ein kleines Hotel Mit Blick auf das Mittelmeer"

Well, not the Mediterranean really - a carpark and the arse-end of an office block. Oh the glamour of my life... Normally, I sing the praises of the Jury's Inn chain but today hasn't been their normal standard. Last time I stayed in the Birmingham branch, my train was late and I ended up arriving after 2200h when food stops being served. I called to ask what time this happens as I wasn't sure and when I said I was running late, the girl on Reception organised a sandwich for me...and when I arrived, said toasted sandwich was still hot and freshly made and they would not charge me for it - how kind is that? Today the service has been fine and the food a good as usual (high-end "fish-finger sandwich" (actual battered fish in a ciabatta-knock-off with green shit in it - not a fish-finger - some manner of "goujon" I suspect), fries, onion rings, Eton mess (very interesting take on it - winter berries with spices in them - was delicious and a recipe I will try and make myself), lime and soda, if you're interested!) but the place is so noisy! I've struggled to get my work done to be honest. It's not noisy people, it's paper-thin walls and some kind of roaring that seems to happen every 30 minutes, which I thought was people next door watching a war movie but it's more like a plane going overhead yet from inside the building and no, not the aircon - it's very odd. Moving rooms is a pain in the arse so going to leave it for now. Trip Advisor tells me it's noise from the lifts - I'll mention it when I leave. I didn't notice it last time I was here but I was further down the corridor.

Today was a hectic and messy day - first of all, since Dawlish fell into the sea last month, I had to undertake the horror of Rail Replacement to Bristol Parkway - we left late because we for some reason had to wait for a train that was connecting to the bus yet of course if the bus is late, the following train won't wait for us - silly system. We ended up arriving early so I managed an earlier train and made my meeting good and early. Then I realised my phone cables were at home and no means to get the internet/music/etc and I needed to get into my email to download Figures for my seminar tomorrow - thankfully the Apple Shop in the Bullring shuts at 2000h so I made it to buy a new one. £15 for a metre of wire basically - Apple, you are very good at overpricing - somehow the 0.5m and 1.0m cables are both £15 but the useful 2.0m cable is £30 - strange pricing structure. I had the 1m one (got my moneys worth for £15!) and a charger, also £15. Mad. System in Apple Stores of no actual counter - just find a drone to process it for you but not all of them seem to be able to so you need some level of psychic powers to know who is able to charge and who isn't. Not very customer-focussed.

Calmed down after that and got to work. Seminar and more meetings then back home. Time to go brave the supersquishy hotel bed and then of course prepare to become a Breakfast Buffet Gannet in the morning!!!

Just read Tom's Blog - I fucking love it - it's such a brilliant picture of fieldwork and how you just have to get on with it no matter what gets thrown at you. I realise I miss him being in the lab - he and J are a double-act and having them separated just doesn't feel right - they play off of one another and bicker (like a married couple) and have little domestics and fall about laughing and so on but when separated it just doesn't seem quite the same. Hopefully Minion I and Minion II will be reunited someday soon!

"Ich habe lang genug mich selbst verleugnet, doch das ist jetzt vorbei! Ich war umgeben von Schatten doch jetzt bin ich frei! In das dunkle Haus kommt Licht - alles, alles ändert sich!"

What a beautiful day - after the storms of January and February and all of the associated destruction, it's almost a relief to finally see the sun once more. Two glorious blue days - not too hot but striking and enjoyable. A second relief has been getting shot of some more things I no longer have need of - this time some Ikea "Benno" CD towers that I simply had no more need of - collected promptly at 1030h by a nice chap who'd driven up all the way from St Austell - a good hours drive - to collect them and a TV unit he'd managed to also get on Gumtree at a bargain price. I wish I'd discovered Gumtree years ago - that and free-cycling, of course. As well as getting a few quid for them, which always comes in handy, it was nice to be shot of them for reasons of space as well as reasons of two of them having been given to me by someone I've no desire to be reminded of - I think I'm now rid of every trace - every gift, every photo - nothing remains and that can only be a good thing. I don't want to carry memories to the Haus Am Meer - I see very much the last few years as a time of retreat and hermitage really - I've only in the last 12 months really gotten back to where I was before I moved here - through the friendship of people like H, who've helped me explore Devon and so on.

My third cousin once removed, W, who I met through the internet and who knew my late Mother when they were children has spent the weekend in my hometown visiting churchyards and, upon my request, spent a good deal of time searching a cemetery for the grave shared by my Mother's Grandmother and my Mother's Aunt - both Bessie - both lead complicated lives - Bessie Sr was probably the one person on that side of the family that I'm most like and she was a Devon girl, it turns out - from Lapford and had lived in Devonport over 100 years ago before moving to Cardiff and then Bristol as a girl, where she eventually stayed. Bessie Jr is a bit of a mystery - no one is alive now who can remember her as she died in 1954 at the age of 29 from cirrhosis of the liver. No one knows what drove her to drink at such a young age or why she died where she did - hospitalised whilst staying with her older sister who ran a pub - not the kind of place you knowingly send an alcoholic, I guess. Still, we may not know much about her but we have found her grave - one of many in the family that needs my attention now as no one is around to look after them and, since Bessie Sr has many parallels with me, I want to do it.

If Bessie Jr was an enigma, her Father was even worse! We don't even know his real name or nationality but we know he looked like the sailor on the Senior Servivce Navy Cut packet - and was indeed a sailor - I love a good mystery though so I'm working on it - he "died at sea" but appears to have actually had a whole family in Canada!

Great Grandad? [Copyright © 2006 Aplinus67. CC-BY-SA 3.0]

Well, I've clinkers to riddle and pots to scythe so I must get on - that front step won't donkey-stone itself!

"Dinner um acht!"

I'm getting a bit reliant on Koishii for take-out food. I got introduced to it by R (cue several amusing "being mistaken for a couple by waitresses"-type-encounters!) and I've had dinner there a few times but started using it for take-out lately - a bentōhas become a Friday night staple for me at the moment. 

I may have slightly overdone it this Friday night with both a chicken katsu bentō and chicken katsu noodle soup - was completely stuffed by the end of it but very worth it. Good bit of comfort food and somehow I seem to think Japanese food is guilt-free - mainly because the amount of glutamate from all the soy makes it taste like a big slab of meat when it's really just a very thin (albeit salty) soup.

Just Eat makes ordering so bloody easy these days - whoever thought it up was a genius - pre-ordered and arranged to arrive just before Jonathan Creek started and I didn't even have to speak to a human on the phone at any stage - yay! Not too impressed with the new Jonathan Creek, incidentally - the mysteries used to start in the first 5 minutes and then you had the whole episode to try and work it out before the end. Now they start really late and last about 15 minutes and to be honest, they've all been a bit shit. I really hope they don't make another series of it - the last few Christmas Specials have been stellar but this crap on BBC at the moment isn't Jonathan Creek - it's a very, very pale imitation.

"Modernde Steine und schwarze Fassaden, so geisterhaft und unnahbar"

My bedroom has a lot of hearts but not a lot of love. Heart-shaped candle-holders a-plenty - some hanging, some standing - a wood heart on the overmantle that used to hang on the wall by the windows. My driftwood heart is still on the bare-brick wall - the other items are waiting to pack and somehow, all just plonked there very randomly looked lovely in the morning sun today, so I thought I would share it.

"Wiener und wisch, Tisch für Tisch, Schrank um Schrank, Das Holz muss glänzen!"

I make no secret of the fact that I abhor housework...actually...that's not true at all - I love nothing more than giving a room a good bottoming and find a perverse thrill in things like polishing the grate or beeswaxing the woodwork and so on but what I really hate is things like dusting, hoovering and so on and - horror of horrors - having to sort through things and chuck stuff. Not because I'm a hoarder - because I'm bone-idle!

I'm happy today because I've sold some old Ikea CD towers I don't really have need of any more (CDs live in cupboards these days since you never play them - you have them all ripped on the PC somewhere, right?) - thank you, Gumtree! I've sold a few things on it lately and I'm much preferring it as a means to get rid of un-needed shit than eBay or the local paper.

I've got removals sorted out - Kirtley's managed to get me a decent quote together and the staff seem pretty good so far - now I hate moving - this is my 20th move in 15 years and I used to self-move until the last 5 years but if they're as good as they've been thus far, I'm sure I'm in safe hands. They're packing some things as I just can't do so much any more - just moving a few boxes last week with L when he helped me take some old lab bits and books to work to get them out of the way really screwed me up for a few days - I have to accept that my body just can't handle that kind of thing any more. Thursday and Friday I was using two TENS machines at the same time - not something I do very often - and I had them on from morning until night - muscle relaxants, pain relief, TENS, compression wear, heating pads - you name it, I tried it. I'm a lot better now after a really good night's sleep but not great to be honest.

I'm sick - really, truly sick - of dealing with companies that can't follow requests. "Hello, I want to cancel X, Y and Z from 4 weeks today please, as per your regulations on notice periods" "Ok that's all sorted for you". Cut to a few days later when a letter comes "X and Y are being cancelled next week and Z is not cancelled". I have spent about 6h in the last week dealing with this and finally seem to be almost sorted but I've been lied to, I've been fobbed off and I even had one particularly rude individual today tell me he would not pass me on to his supervisor as he "did not think [my] complaint would go anywhere" - sorry, sunshine, it's not your call - needless to say I now have his name and ID and location and it'll all go into the very, very long letter of complaint once the whole sorry affair is over - at which point I'll name-and-shame on here - I don't like naming and shaming companies whilst a complaint is on-going as it does bias the case - you get their PR team begging you to remove it and so on, no matter how 100% true it all is!

So, after the hassle of that - which I don't need at present - I then managed to get a really good night's sleep last night and woke up feeling quite good - the pain in my ribs and pelvis was a lot better and then T texted to see if I was out in the sun yet - oh yes - a lovely sunny day - I'd not noticed it yet! So I headed out into the sun and we had coffee down at The Secco Lounge in Royal William Yard, which was nice. I've been there before a long time ago and to be honest, half the people I was with that night were really quite ill the next day but we could not relate it to one specific item as two people ate the same thing but only one was ill - for example. I was really bad myself and I still think it must've been the salad as of course not everyone eats that even though it comes on the side of every plate. They've painted it yellow inside now and it looks nice but they've tried to to the whole "eclectic mix of old mirrors on one wall" thing which is fashionable at the moment - but T pointed out they were all reproductions and too perfect - shame really as it would work well if they did it properly. We then went for a wander back through town before it got too cold.

I know it's not cooking but I'm having Marks's meal for 2 for £10 all to meself for me tea! I'm not starting the whole "cooking properly" resolution until after I'm settled in the Haus Am Meer, but that's a while off yet - for now, I want convenience and speed! Hunter's chicken and Cheddar mash!!! Om nom nom nom!

"Jeder Raum in diesem Haus atmet Melancholie"

It's funny how once you know you're moving house - or that a relationship has ended or that you're starting a new job - the old one somehow feels cold and not like home any more. That's the state I'm now in - about to move and kind of in limbo - neither here nor there and starting to reduce down to boxes and cases and so on.

One of my goals - a "new house resolution" if you like - is to eat better and waste less food - I seriously may as well just put £50 in the bin each month right now. So, the point of this blog is to try and force me to cook more by admitting how much I'm wasting and how much I'm saving and how much better/worse I'm eating. I've no idea if I'll keep it up - it might never really kick off to be honest - but I feel I should at least try.

My plan is that whatever I don't waste each month, I will add up and donate half of that value to charity at the end of the year.