Route Knowledge?

Robbie has been extending his route knowledge recently, or at least that's his excuse. The combination of disturbed sleep (due to pain) and new medication caught up with him on his journey to work and he fell asleep on the train before reaching New Street. He awoke to find himself heading for Walsall - the train had reached New Street and departed again! Fortunately he catches a very early train in order to have a more comfortable journey so even after his 'little diversion' he was still at work in good time. Poor Robbie, he put on a brave face and joked about 'route knowledge' but he was quite upset about it. Sometimes trying to manage chronic pain can make even the simplest things very difficult.

When I wrote my previous blog entry about Robbie leaving his trousers at work, I thought that was the end of his 'trouser troubles' but the drama continued. Despite being exactly the same size as the trousers that he already has (that fit him perfectly) the new trousers didn't fit, so I had to deal with a very disappointed Robbie. We had the folded arms, the sulky look and the jutting bottom lip, but eventually he had to accept defeat and order a different size. The new ones arrived on Friday, but he has been so poorly that he hasn't tried them on yet - I think I will cry if these don't fit! 

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.

Ticks in Boxes

I didn't write much about the weekend mainly because I was on my own for most of Saturday, Robbie and Sam left early to spend the day with Robbie's dad and step mum in Norton Canes. It gave me a chance to catch up with some housework and to venture into the garden to tackle the hedge. Sunday morning was less busy and I was determined to relax and listen to The Archers Omnibus on the radio. You can always rely on Robbie for a Sunday morning quote and last Sunday was no exception. I hadn't seen much of him all week so it was nice to wake early on Sunday morning and know that we were in no rush to get up. We could have talked about anything under the sun, we could have just been quiet and enjoyed the luxury of time, but Robbie talked endlessly about the wonders of his dad's new cheese grater. Surely there is only so much anyone can find to say about a cheese grater - unless you are Robbie of course!

The Galaxy went back to have the break pads checked yesterday, they were fine but there is an intermittent fault on the sensor so I have to put up with the warning light and the very annoying alarm sound until it becomes a constant fault, then they should be able to identify which sensor is causing the trouble. I'm sure that car has a gremlin in it!

Sam went for his hay fever medication review at the doctors. It was such a pointless exercise, the nurse didn't ask anything about his symptoms she measured him, weighed him and asked if he smoked - no way will he smoke! How ridiculous, there would be some point to asking if it was part of a message to prevent young people from smoking, but it was just a tick in a box on the computer. That is the first time in his life that Sam has been weighed or measured at the doctors without screaming the place down. When he was younger he was extremely uncooperative when it came to developmental tests. He took particular exception to the wooden giraffe measuring stick on the wall, he wouldn't go near it and he screamed so much that people must have thought he was being tortured. Maybe he is like me, I object to being measured and monitored, and these days there is so much bureaucracy involved in health care that I don't feel like an individual anymore. It isn't the doctors fault, it is the system that is imposed by the government.

One Step Forward and Two Steps Back

I am beginning to think that the world is conspiring against me. Why do the little tasks turn out to be so complicated and time consuming? I had to take the Galaxy to be serviced last week, this week it passed it's MOT and I was pleased that it was ready to go on holiday. Two days after the MOT the safety warning light came on to tell me to check the break pads, so it is going back again on Monday! The expense is bad enough but the inconvenience of arranging lifts to get to an from the garage is even worse.


Meg also has an appointment on Monday, she is going to the vet to get her booster injection and the kennel cough treatment. They put the kennel cough stuff up her nose, but the vet ends up wearing most of it because it always makes Meg sneeze.


On Tuesday morning Sam is going to the doctors for a medication review. The Micra is having it's MOT on Thursday and I am going to the hairdressers on Friday. I still need to book a medication review for Laura, she has to see the GP rather than the nurse for her review, because she has Pityriasis Lichenoides Chronica, an unusual skin condition that requires a lot of medication and she also takes medication for migraine. Dave the cat will also need to go back to the vet very soon because his paws are getting sore again. With all that to fit into an already busy life I think I am in for a stressful week.

On Friday I went to the doctors to drop off our repeat prescription requests and to book the medication reviews for Laura and Sam. The girl on reception informed me that Sam was very late for his review and was therefore not a priority. They use the date of birth as a review date, Sam's birthday is in December - who needs hayfever medication in December? They wouldn't thank me for taking up their time on that during Christmas week! I couldn't get an after school appointment for Sam until mid July so he has to miss an hour of school on Tuesday morning just for the nurse to tick a few boxes. I couldn't get an appointment for Laura at all, she has to see the GP for her review rather than the nurse because she is on beta blockers for her migraine and she has loads of medication for her skin condition. I have to ring at exactly 8.30am on Monday when new appointments wil be released. Until a couple of years ago the system worked quite well, you rang on the day and you got an appointment. Then Tony Blair decided that we had to be able to book ahead, the government did their usual micro management thing and imposed loads of new rules so now it is worse than it has ever been!

Robbie rang me at lunchtime on Friday to ask if I would mind picking him up from the station at 3.50pm because he had booked a hair appointment and he wouldn't be able to get home on time otherwise. I agreed and I was just pulling into the station when Robbie phoned, I couldn't take the call but when I had parked I found that he had sent a text with a grovelling apology telling me that he had given me the wrong time and he would be there an hour later. There was no point going home, by the time I got there I would have to turn around and go back again. It was pointless to get cross so I just sat there and waited. It was one of those days where I had rushed around all day but I ended up further behind than when I first started!

One of Those Days 06.02.08

It was one of those days. Robbie's first text of the day got him into enough trouble to last a week. Last month he promised me that he would seriously modify his language but this mornings text conveyed his feelings about Network Rail in the most strident terms. A couple of phone calls followed Robbie was ranting so much that he was almost incoherent but eventually I understood that none of their voyagers had been able to leave the depot at Central Rivers due to a total power failure. Robbie was so cross, everything was a total shambles, the departure boards at New Street announced that train after train had been cancelled and there was absolutely nothing they could do about it until Network Rail got their act together. I didn't realise that so many trains went off to Central Rivers for the night, it conjures up images in my mind of Thomas and his friends all tucked up in their sheds on the Island of Sodor

My own morning was a bit challenging too. Dave the cat went back to see the vet and we have arranged for him to go in on Friday to have treatment on his bad foot. As well as his usual supply of steroids and antibiotics the vet prescribed a probiotic because his other tablets upset his tummy. The vet said it would be simple to administer the dose from the syringe type dispenser into the side of his mouth. It proved easier said than done. He clamped his mouth shut, swore menacingly and lashed out with his claws. I don't give up easily and I eventually got the required dose into the cat's mouth, that was when the fun really began. Dave sneezed or spat the medication back at me! It cost more than powdered gold and I ended up wearing it - such gratitude!