I Want My Bed Back!

I woke up early this morning, my back ached but I was still tired. I had to sit up for a while to let my back sort itself out, so I had half an hour on the computer. I tried not to look too closely at the chaos in the bedroom, we still haven't got our clothes sorted out properly since our holiday. Mentally I pushed that particular job higher up my 'to do' list, but my top priority at that moment was more sleep and I snuggled back under the duvet to make the most of my unhurried Sunday morning.


After a lazy morning Emily and I went shopping to buy a present for my new nephew and of course something for his big brother too. Baby George was easy to buy for, we chose some very cute clothes, then we spent ages trying to find something just right for Oliver. We chose Playmobil sets because Emily always loved those when she was little. It was lovely to spend time with Emily because I haven't seen much of her since getting back from our holiday.


Before we went out I'd asked Robbie to sort out his clothing. He had agreed rather too willingly so I didn't expect much action. I was pleasantly surprised to find that he was up in the bedroom sorting out when we got back. He came trotting down the stairs in his pants to explain that he'd been busy reorganising his Tshirts. He then went on to explain a rather complicated arrangement about what he keeps where, and I have to admit that I 'tuned out' at that point.


I didn't actually go and look at the bedroom until this evening when we got home from delivering my mum's luggage to her house. I am not sure what I expecter but what I saw were piles of clothes like molehills all over the bed. It didn't seem as if there was less 'stuff' around the room, but I couldn't be sure. He insists that he worked hard at sorting his clothes out, but I have a sneaky suspicion that he was sidetracked by his laptop. Who knows, all I can be sure of is that I still need to devote a couple of days to tidy the bedroom. When it was bedtime I had to send the 'mole catcher' upstairs to find the bed before I could get into it!

Lost For Words

Photo by ZoofyTheJi

It is not really true that I am lost for words. I could write about Robbie's missing pants (again), he got so wound up about two missing pairs of black pants yesterday. One pair wasn't missing at all, they were folded in the pile of laundry that I had taken up to the bedroom the previous evening. Apparently I hadn't folded them correctly and on the way to the station he patiently explained how to fold his underwear and amazingly he survived - I must be mellowing in my old age!  The other pair of favourite pants were not far away either, he 'found' them this morning and stood there waving them at me triumphantly in the style of a bull fighter - it isn't the best sight first thing in the morning! 


I could write about the roof leaking when we had torrential rain last Saturday night. It dripped through the ceiling on to Robbie's side of the bed, it ruined some of his precious railway books and it spoiled the covers of some of his vinyl records. He was so angry about it. After rescuing his things and finding a container to catch the water he stormed off to sleep on the sofa and I was left wide awake worrying about how much it is going to cost to fix the roof. It will be a huge amount because it will require scaffolding. 

Photo by Laura Jones

What I really want to write about is how much I love Robbie and how useless I feel sometimes. I am not a soppy, sentimental sort of person but I do care deeply about him and I have been terribly worried by the level of pain that he has been experiencing in recent months. Pain is exhausting and constant pain can be really lowering because it affects everything you do and it changes the way you feel about yourself. Robbie is so strong and so determined to be 'normal' (in his own unique way) but it gets him down when his back hurts and his legs misbehave. I can't take his pain away but I can be strong and help him to accept the need for more effective long term pain management. I can make sure he takes his tablets and help him to cope with the rather unpleasant side effects. The tablets make him very tired, waking him up in the morning is like trying to raise the dead. Sometimes he gets very cross with me and he has been known to tell me to go away in no uncertain terms, but I don't take too much notice of that. One way or another we will get through this. It will take a long time and a lot of trial and error to find the correct medication and the correct dose to manage the pain without devastating side effects. I need to be strong, I will not let him give up.

The Way To His Heart

This week has been difficult for both of us; for me because all my attention has been taken up with a DLA renewal application for a family member, for Robbie because he is very busy at work and he is in so much pain from his back and legs that coping with everyday life is almost impossible. I was so worried about him on Thursday evening because he could hardly move, but Robbie being Robbie, he wasn't going to give in. It took a superhuman effort, but he headed off to work bright and early on Friday morning.

The weekend could so easily have been a disaster, Robbie was in pain and frustrated because it was stopping him from doing most of the things he wanted to do. We were in no hurry to get moving on Saturday, but Robbie decided that if he had to miss out on some of his usual weekend activities he wanted to ride on trains instead. So at midday we were at the station ready to catch the 12.17 to Birmingham, there was just one problem - it was cancelled! I'm not sure if was that or the tepid coffee that upset Robbie most, but I was treated to one of his rants. He soon calmed down and before long we we were heading to Birmingham on a blue train and Robbie got his favourite seat, so he was happy again.

I suggested that we should have a look at some of Robbie's favourite shops in Birmingham. It was very brave of me because I don't cope very well with crowds and I am not keen on Birmingham, but I wanted him to have a nice day. We went to the Ian Allan bookshop, a record shop and lots of shoe shops because Robbie had his eye on some new trainers. I saw the most amazing pair of Dr Marten boots in Cloggs - I want them so badly but they are too tight across my foot where the lace up bit starts. Robbie bought himself an Animal T shirt and I bought him what he refers to as 'railway porn' - a Quail map (a book of track maps).

There was a loud and very scary parade on New Street. I couldn't see much because of the crowds, but there was a dragon and some dancers and a whole gang of men in kilts making an excruciating noise with bagpipes. I had to go and hide in The Works until it was all over - I bought a couple of books in there too. Robbie wanted to have a coffee in Costa before we went home, it was a bad decision, it was crowded and far too noisy so neither of us enjoyed it, but I guess it prepared us for the journey home, some football fans decided to serenade us and they kept up their chanting all the way to Rugby. If that wasn't bad enough the moron in front decided that the whole train had to listen to his music, it made me feel quite violent. Surprisingly Robbie was quite chilled he was in his own little world, lost in the detail of his Quail map! It was worth making the effort, we had a really good time despite the wild men with bagpipes and the problems on the train.

Panic Stations

Robbie had a very busy day ahead of him, so he was up before the birds in order catch a very early train to work. He wanted to get well ahead with his work today because he has a deadline to meet and most of tomorrow will be taken up with his friends funeral. He left the house bright and early ready to face another week, all was going well until he was just yards away from the station when with a sinking feeling he realised that he had left his bags (including his laptop) at home. He has been suffering from very bad back and leg pain in recent months he has been trying to carry less to and from work in order to reduce the problem. Using a rucksack instead of a briefcase has helped a little bit, but it has put Robbie out of his routine and I think that is why he didn't pick up his laptop. At least it proved that I have my uses, I was able to make an emergency dash to the station to reunite him with his laptop!

Making Life Complicated

Robbie has forbidden me to write about his back - and you certainly don't want me to write about his front! So you will just have to guess why I absolutely insisted that he had to go to the doctors earlier this week.

We are lucky because the doctors at our surgery are excellent, but since Tony Blair messed around with appointment targets a few years ago it has made the whole process of getting an appointment much more complicated. The theory is that it should be possible to book an appointment several days in advance, but every time you try there are no appointments available, so yet again Robbie had to get an 'on the day' urgent appointment. They have a state of the art phone system now, when you ring it tells you where you are in the queue and you have to sit there waiting listening to advice in swine flu and other medical services awaiting your turn to speak to a human being. Robbie started at 29th in the queue so by the time he spoke to the receptionist he had almost lost the will to live. The appointment line opens half an hour before the surgery opens and we live close by so it is usually possible for him to get an early appointment and then I rush him across town to get the train so that he is not too late for work.

He should have gone for a follow up appointment long before Christmas, but he put it off because he had too much work. He makes me cross, this is really silly, if you have a car and don't maintain it properly it will very soon breakdown completely and the same is true of our bodies, if we don't take care of ourselves we can do lasting damage. So why do I have to drag him kicking and screaming to the doctors, and when he gets there why does he have to be so macho and make out that he can cope! I have never known him to be in so much pain before, it is making every aspect of his life more difficult and he really has to stop acting like superman and start dealing with it sensibly.

A Deaf Ear

My car came back yesterday it looks good but it feels strange driving it after the Nissan Note, I am really going to miss that hire car. I will be glad when the whole car saga is over and done with, it really annoys me to think that one act of total stupidity by a driver can cause so much inconvenience. He pulled out of a parking space without even looking because he was on the phone, I just hope it is causing him inconvenience too!

Robbie was in a terrible state yesterday, he could hardly walk. He admitted that he came to a complete standstill when he got to New Street because the pain in his back was so bad. It took him ages to get to work because he was so slow. I am worried about him getting stranded at work and being in so much pain that he couldn't get home, I don't know how I would manage to get him back.

For months (well years actually) I have been teased by Robbie and the children about being deaf. It turns out that they were right, I went to see the consultant yesterday and the tests have showed that I have nerve damage and I can't hear a range of frequencies in my right ear. There is nothing they can do and a hearing aid will not help, so it is just a case of getting used to it. I have to have an MRI scan just to rule out any other problems but assuming that is OK there is nothing else to do about it. When I told Robbie and Sam about it I didn't expect them to be devastated, but I was a bit hurt by their giggles, I don't know why a hearing problem should amuse them. Oh well, boys will be boys!

Not A Good Start

Robbie has gone back to work today after the Christmas/New year break. Unfortunately his back started to play up very badly yesterday afternoon and it got progressively worse. This morning he struggled to stand up and getting dressed and going to work was an act of pure willpower. I guess it took his mind of any other bits that may be hurting, but I worry about him when he is in this much pain because the pain makes him really short tempered and he is likely to be difficult to work with, but there is nothing I can do to make it better.

My car is coming back today, it has been away since 14th December. I just hope the moron who drove into me has had to put up with as much inconvenience! I have had a hire car while my car was away and I love it, it is a Nissan Note and it is lovely to drive, I will be sorry to see it go.

Lost For Words

It hasn't been the most wonderful weekend. Robbie has been struggling with a bad back and an uncooperative leg for a while and he found last week especially challenging. We planned to go shopping as soon as he got home on Friday, but I could tell as soon as he walked to the car that all was not well. He was not walking very well at all and as soon as he got into the car he complained about the pain in his leg. He then sat in the car and had a serious word with his foot telling it to behave itself - I was expecting the men in white coats to turn up at any minute! It is the sort of situation when whatever you say will prove to be the wrong thing. I could tell there was something on his mind and before long he told me that a casual remark by a colleague had really got to him. He hates to give in, and accept that he has a problem, but occasionally he has to take things a little more steadily. He still meets his deadlines, but sometimes he just needs to do it his way.

Shopping wasn't a joy Robbie insisted that we should still go but he was ready to fall out with his own shadow. He may not have had much control over his wayward leg, but he was going to make sure he controlled everything else. We nearly came to blows when we got to the checkout because it had to be done Robbie's way and he got really assertive about it. I left him to put the shopping in the car his way, but when I dared to put something in the fridge he declared war and ordered me out of the kitchen. When I went back a bit later to do some washing up he tried to take over and when I resisted he stood behind me telling me I was doing it all wrong!

It was no surprise when later in the evening we had an argument because he was being totally controlling and unreasonable. I look forward to the weekend all week but I don't know why because something or other always comes along to spoil it.

On a More Serious Note 24.02.07

Well, Friday was another one of those days when I couldn't do right for doing wrong. Walking on eggshells is an essential parenting skill, but as the children become older it becomes increasingly challenging.

Poor old Emily is still crushed by grief following the death of her friend Charles. I don't think I have ever felt so useless, anything I say or do just makes it worse. He was such a lovely young man; life can be so cruel sometimes.

Samuel went to school in tears on Friday morning because I have apparently embarrassed him. Nothing unusual there, I am apparently a constant embarrassment to my children! My particular sin this morning was to send a note to his teacher, Sam hates anything that draws attention to him. He can be engaging, funny and thought provoking, but the reality of living with autistic spectrum disorder is often scary for him and very difficult for those around him.

We went to school with Laura to discuss her A Level options on Thursday evening. She was given a formal offer for the subjects she wanted, Maths, Chemistry, Physics and Geography and I thought it was a very successful meeting. I felt that Robbie and I had dressed appropriately, behaved properly and not said or done anything that could have embarrassed her in any way. Laura disagreed!

We saw her class tutor who I rather like. The poor chap has the misfortune of looking at least 15 years older than his true age - not good when you are in your mid 20's. To make matters worse he looks incredibly like a jelly baby which makes it very difficult to have a serious conversation with him. Apart from telling him that Laura's art teacher was useless, I behaved perfectly. I could have said that her behaviour suggested that she was an alcoholic, but 'useless' seemed to sum up the situation succinctly.

We then went to see a senior teacher about Laura's sixth form options. I didn't comment on the fact that he was more camp than Graham Norton or that he had a larger ego than Jeremy Paxman. When he said that General Studies was a very useful subject, I didn't tell him that he was talking out of his rear end. I smiled sweetly and pointed out that it cannot be counted for University entry and Laura's general knowledge is extremely good, in fact it is a little too good for my liking at times!

Robbie is also giving cause for concern. He will shoot me for putting this on the blog, but he is really struggling with his back and he is desperately trying to pretend everything is OK. If he tries hard enough he may even convince himself!! He is going back to the doctors, even if I drag him there kicking and screaming!

We were gutted last night when the news of the rail crash involving a virgin train came up on his pager - yes, he found the pager! Robbie couldn't settle and kept up with the news until late into the night. I feel very sad for the people involved and their families, especially for the family of the lady who died. It is hard to imagine the horror of the crash when as a family we are still coming to terms with the enormity of the death of Emily's friend Charles. The news reports made me so cross when they said that an elderly woman had 'lost her life', people lose keys or money, they don't lose their lives, they die. Death is not a deliberate or careless act, it is one of the few certainties of life but it is impossibly hard to bear when it happens a 17 year old or as a result of a horrific crash. Richard Branson seems to have reacted quickly and appropriately. I know he has his critics, but he sounded shocked and sincere unlike the head of Network Rail - weasel words from a chap who looks like a ferret.

What Did You Say? 18.02.07

I woke up early this morning because my back was hurting, but I stayed in bed for a while reading and listening to Radio 4. There is a short program called a point of view, this week Clive James spoke about the way that we have to keep messing around with our language. Some of his talk was railway related, perhaps a bit overstated, but thought provoking and amusing. This is part of what he had to say

"Not long ago, at Paddington, I ran to catch a train that was called First. The long version of the name is First Great Western, which is already bad enough because it suggests the possible existence of a Second Great Western. But the First Great Western company insists on referring to itself and its trains as just First.
My problem, as I ran with a heavy bag in each hand from the barrier end of the platform, was to find the first second class carriage in a train all of whose carriages were marked First. I cursed First in the worst language at my command, but my outburst at First was nothing beside the imprecations I rained on One.
Yes, what used to be simply called Anglia Railways is now even more briefly, but far less simply, called One. This leaves the way clear for the railway station announcer to inform potential passengers that one One train will leave from platform two and the other One train will leave from platform three.
If the first One train leaves at twenty to one it's the twenty to one One train and if the other one leaves at ten to one it's ten to one on that it's the one One train one actually wanted but one couldn't understand the announcement.
What happens when you have to change from a First train to a One train I leave to you, but you might face a situation where you should catch the first First train if you want to change to the one One train that will get you to the mental hospital before you crack up.
Except, of course, that it's never now called a train, it's called a service, just as the passenger is now a customer. Linguistic philosophers have already written theses about how the vocabulary of marketing has invaded the realm of transport, which logically should have no need of marketing, because people know exactly what they want and demand nothing except for the means of transport to be safe, clean and on time.
But the language of marketing spreads inexorably because it gives those who use it a chance to be creative, which everybody has been taught is a desirable thing to be.
In fact, the last thing that a passenger who has already been outraged by being called a customer wants to hear when he is sitting, or probably standing, in a train running late, or probably not running at all, is a voice on the public address system calling the train a service, when providing a service is exactly what it is currently in the process of not doing.
Nor does the voice on the public address system show any sign, once it gets started, of wanting to shut up. The voice supplies the information that the buffet car is situated in the middle of the service, for the benefit of anyone who thought that it might be travelling along separately some way behind the service. The voice apologises for the delay caused to your journey, a way of softening the fact that the delay had been caused, not to your journey, but to you.
The voice continues to audition for a career in broadcasting by pointing out that the first One service to arrive at the next station will be the last One service to continue any further until the engineering works have been completed. Where did all this start? Well, it probably started when the name British Railways contracted to British Rail