Therefore let us not sleep, as do others; but let us watch and be sober - 1 Thessalonians 5:6 King James Version

Robbie wanted to go out on Friday evening, I wasn't keen because he'd had a very challenging week and I knew that he was very tired and struggling to cope with pain from his back and legs. However it was the anniversary of his friend's death and he needed to meet with other friends to remember better times. I begged him not to be too late home because I was tired too and I didn't want to be too late to bed.

We had spoken on the phone before he went out and I kept my mobile close to me hoping that he would remember his promise not to be too late. It remained silent all evening so I sent him a text to say that I was going to bed and he should ring me when he needed a lift. I sat in bed listening to the radio and doing some writing on my netbook, trying to stay awake. He finally rang to say that he needed picking up at midnight and I asked him to ring me again when he got to Rugby just to make sure that I hadn't dozed off. Time marched on and no call came, so I set off for the station, I thought Robbie had just forgotten ring. 

When I got to the station I began to worry that Robbie may have fallen asleep, so I rang him several times and sent texts for him to contact me, but there was no reply. A stream of people wandered wearily around to the car park indicating that Robbie's train was in, I looked and looked but there was no Robbie. After a brief flurry of activity the car park was still and silent again and I was still there waiting. Time passed very slowly but eventually a few more weary travellers came into view, another train had arrived, but after a brief moment of hope my heart sank, there was no sign of Robbie. By this time I was seriously worried, my mind raced, perhaps he'd had a bad fall, perhaps he had even fallen under a train ........... Finally the truth became clear, a rather confused text from Robbie revealed that he had fallen asleep on the train and ended up in Buckinghamshire. A phone call followed and a rather unhappy Robbie admitted that it would be a long wait for him to make his way back. I wasn't best pleased, but at least he was safe, so I couldn't be too angry. We finally got home at about 2am - not the best start to a weekend! 

Don't judge each day by the harvest you reap, but by the seeds you plant - Robert Louis Stevenson

I love Saturdays, there is nothing better than the luxury of time. Going to bed on a Friday evening knowing that you don't have to set the alarm clock. Then waking up on a Saturday morning knowing that you can lay there and listen to the radio if you want to, or you can take a long lazy bath without anyone telling you to hurry up. Perhaps most important of all from my point of view is having time to enjoy a cup of tea without the need to rush, in fact I can enjoy two cups of tea if the mood takes me!


It was such a relief to have a more or less dry day on Saturday, it gave us a chance to consider the garden. I use the word consider rather than a more active word because I rendered myself incapable of anything more active. Robbie whispered the magic words into my ear and I gave in to temptation. The words in question were 'full English' - Robbie's speciality. I couldn't resist, it was more brunch than breakfast by the time we got around to eating and by then I was hungry. I ate too much because it was too nice to leave and after that I felt so full that I thought I would never be able to move again. So we spent time planning our next moves in the rather than actually doing the deed.  

We decided that the back fence needed urgent attention. I wanted something to grow up the fence that would look more attractive than the fence and would deter anyone who may be tempted to climb the fence. So we went out to choose some plants to grow along the fence. Robbie spotted a very pretty fuchsia, which while beautiful was not what I had in mind at all. We settled on Pyracantha it has several things to recommend it, it will add some colour to the garden in winter and if anyone tries to climb over that they will probably end up on hospital, it has thorns as long as spears! We bought some more potting compost too. We need to replace the soil in the tubs in the front garden, they have been washed out and waterlogged for so long that we need a fresh start. I think I will leave that job for a little while until I am certain that it has stopped raining.

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.

Time For Action

Things tend to creep up on you without you taking much notice until one day it hits you like a thunderbolt that something is badly wrong and things can't go on the way they are. That is how it has been with Robbie's pain, it has always been there and it has always worried me, but Robbie hates it when anyone makes a fuss. so I have got used to noticing a lot but not making a big deal of it. None of us see ourselves as others see us but when Robbie looks in the mirror he sees Superman staring back! Thankfully it doesn't involve him wearing a skin tight outfit with with his 'smalls' over his tights - but he thinks that he has to cope with everything without complaining and without asking for help. This is especially true when it comes to coping with the pain and problems caused by spina bifida. He doesn't like to dwell on it, as far as he is concerned what can't be cured must be endured. The problem is that this approach only works while the pain is manageable, but it had become unmanageable and just coping with everyday life had become an ordeal.


Getting Robbie to see the doctor was easier said than done, but I wasn't ready to take no for an answer and he was in so much pain that he knew he couldn't go on like that. So on Friday morning Robbie and I went to the surgery to explain the situation to the doctor. His company allow casual dress on Fridays but as we walked across the car park to the surgery door I wondered why he had chosen that day to wear see through Converse with vivid blue, yellow and pink socks, jeans and a Star Wars t-shirt. The doctor was lovely, she listened and asked questions and she could see that he couldn't cope with the pain. She wanted to see the range of movement he had in his legs and I had to suppress a smile when she got him to lay on the table and had him waving his legs around like a dying fly. She could hardly miss his psychedelic feet and the look on her face was priceless. 


My hidden smile was replaced by a broad grin when the doctor said that she thought that it would be possible to manage the pain. She explained that the pain will not go away but there are several types of medication that can dampen the pain messages coming from the nerves to the brain. She has prescribed medication with a view to him taking it long term. It will take up to six weeks before he will experience the full benefit, and it will have some side effects, but it was such a relief to have a long term plan to deal with the pain. Robbie's sense of relief was even greater than mine, he even thanked me for making him go to see the doctor. There are no quick fixes and the pain will not go away but the medication will make a huge difference and hopefully Robbie will be able to enjoy life again.

Robbie On A Bad Day

Where do I start? Maybe I should just say that Robbie's mood yesterday evening was a little fragile, it was clear that he was tired - the sound of snoring was a bit of a hint! I went to bed at around 11pm and I thought he would follow shortly after - he didn't! I made sure that all my alarm clocks were set correctly because it always takes my body clock a few days to adjust to losing an hour. Then I settled down to sleep. The next thing I remember is being woken by someone treading on my ankle - Robbie had finally decided to come to bed. I probably told him to go away as I drifted back to sleep, but I was woken again shortly after by a loud bleep, then another, then a whole series of bleeps and a flashing blue light. In my confused and sleepy state I couldn't work out what was going on, was it morse code or some sort of secret message? I forced my eyes open to see Robbie kneeling naked on the bed attempting to change the time setting on his new Lego alarm clock. There was a brief but brutal exchange of insults and I advised Robbie to take clock to the bathroom to set it with the light on! It was just after 2am and I was determined to get some sleep so I turned my back on him and pulled the duvet over my head.


His Lego alarm clock announced  that it was 5am and time to get up - he slept on. After several further episodes of blue lights and bleeping and considerable input from me, Robbie plodded off to the bathroom. That dratted alarm clock continued to serenade me every 5 minutes until Robbie returned, I wanted to implant it in his head but I restrained myself and told him to take it away and drown it! His interest was then taken up with pants! Allegedly I had deliberately deprived him of his favourite underwear by failing to do a dark wash yesterday. I did a dark wash on Sunday evening, how many pairs of pants could he possibly have got through since then! I provided him with clean pants and socks but he wasn't keen to let go of the issue and he continued muttering about the underwear conspiracy until he found something else to moan about. Apparently I have deliberately failed to oil the hinges on our bedroom door just to annoy him! That man makes my hands itch sometimes!!


The thing is that none of those things were the real problem. The truth is that he is in so much pain from his back and his legs that he doesn't know how to put one foot in front of the other. He will not go to the doctor because he knows there is nothing they can do except give stronger pain killers. I feel so useless, I wish I could make the pain go away, I wish I could do something, anything to make it easier for him. There has to be some way to ease the pain and I am not going to give up until I find it!


Photo by Clix

Can't Make it Better

I am so worried about Robbie. His legs and back have been causing him so much pain recently and I don't know what to do to make it better. Last night he didn't know what to do with himself, he couldn't sit down, but he couldn't stand up or walk around comfortably either. He described it as a constant unbearable throbbing and it made him really bad tempered. The most frustrating thing is that all the doctors can do is offer stronger combinations of pain killers but it doesn't work. I want him to go back yet again to see a consultant, there must be a better way to manage the pain, but Robbie seems to have given up hope of getting it sorted out. He says that they do tests and more tests but they never make it any better. Last night he didn't come to bed at all because he was too uncomfortable and he just couldn't settle. He can't go on like that!

No Easy Answers

Robbie and I were rather anxious when we went to the hospital to see his consultant yesterday. We were surprised to find that we didn't have to wait very long until Robbie was called into the consulting room. The consultant explained that the MRI scan had been worthwhile because they were able to get some good pictures of Robbies spine and the pictures had been reviewed by a specialist at Oxford. As expected there was clear evidence of the damage caused by his spina bifida and they could see that his spinal cord was significantly longer than normal with less smaller branches coming from it. The good new was that there is nothing on the scan pictures to suggest that there is any tethering of the cord at the moment. There were words of caution too, Robbie should never have a lumbar puncture or any procedure on his lower back because it could cause serious damage. So the messsage was to keep walking, to accept the falling over and the pain as just part of him and to take great care of his lower back because if anything goes wrong with it they will not be able to put it right. It sounds a bit grim and it would have been nice if we could have found a way to stop the falls and to deal with the pain, but we didn't really expect that. I think we just have to be grateful that the news was as good as we could have hoped for. So now he just has to learn to bounce when he falls over and hopefully he will try not to fall in front of a car or a train!

Superman 05.02.07

Robbie's habit of wandering around the house in his pants causes a number of problems, there is the obvious horror factor of course, but there are less obvious difficulties too. It gives him the idea that he is Superman - we don't have many mirrors in our house!! He always thinks that he can take on the world, that's fine most of the time, but he is rubbish at taking care of his own health. He forces himself to keep going when his legs or his back hurt and then he ends up hardly able to move and all he can do is lie on the floor. There is no point nagging because it doesn't make a scrap of difference, but I do worry about him, he was so bad today that he couldn't manage to get to work. I hate it when this happens because far from being Superman he is more like an incapacitated troll! Unlike most of us he absolutely loves his work and he is impossible if he has to miss a day.