Thursday, 19 May 2011


It’s been an odd day. Or perhaps just a discombobulating start to the day. I like the word discombobulated. Try saying it out loud to get the full effect of its loveliness.

The confusion started at about 6am. I suppose waking that early is not hugely unusual for me. In fact I often wake much earlier. 2, 3 and 4am are familiar friends. Unless I have a job that day, getting up and brushing my teeth at 6am is unusual. Getting up, brushing my teeth and pottering around then going back to bed was odd.

Getting up, brushing my teeth, pottering around then going back to bed and falling deep asleep was plain weird. Especially when I heard my meds alarm at 8am, Extremely tired, I put it on snooze three times before obeying and taking my four morning drugs – in order of pill size just for the fun of it. Then I fell asleep again. This is not my normal behaviour.

I vaguely heard my iPhone ‘get going now’ alarm to set off for a mid-morning hospital appointment. I ignored it. When I suddenly woke 10 or 15 minutes later I had no time to shower, breakfast, drink water. I just got dressed and set off for the hospital. Phew! I was going to make it in time.

Then when I got to the hospital, the car park was full. Full with a queue to get in. After a few minutes I gave up on the queue and drove round to the main hospital car park. There was no problem parking there. I even found a blue badge parking bay. Just as well because it is a really long walk from this car park to the other building in the hospital where the neurology department is based. Lots of long corridors. Lifts up, lifts down. It’s not a straight forward route. And when I say 'walk' in my case I mean stumble, shuffle, stagger, weave.

No wonder I was discombobulated.

I hadn’t really thought about this appointment. I suppose I knew that, if I was in neurology, they would need blood and, sure enough, one of the first things my MS Specialist Nurse said was that I needed a blood test. I told her I would have to drink more water first.

It’s really hard to get blood out of me. My veins collapse and I need to be well hydrated and warm to stand any chance of success. I hadn’t drunk anything (apart from a little water to swallow my morning meds) and, because it was sunny, I was wearing a little sleeveless top and thin jacket.

My blood pressure was fine. The nurse took it at least three times. She told me the oddities about what was happening now the drug (Fingolimod) has been licensed before the trial has even completed. Then I talked with the doctor whilst being supplied with more water to hydate me to the max before the blood taking.

My discombobulation was not alleviated by the doctor asking several ‘when…’ questions. I don’t remember when things have happened. Fortunately, she had the bulging folder of notes which is ‘me’. Just me on this drug trial. I dread to think how many trees have gone into the other huge folders of medical notes held by the various hospitals and doctors I have seen over the last couple of years. A small forest’s worth I expect.

Anyway, discombobulation subsided as my MS nurse did her usual chatting to me whilst the phlebotomist took blood. Success. Blood taken, brain connected. And my MS nurse took me through a secret, staff only, route to get out of the hospital.

I was combobulated again.


  1. I like that word it's such fun to say! Then it's happening admitting it by saying it, helps me to see it's just me being me. Thank you

  2. Funny, I saw one of your blogs on haha funny how we all end up connecting in some way (us bloggers)

  3. I visited often my not being on wordpress I couldn't leave a comment or even say I liked a post. So this was the post that changed my mind to get an account here and now I glad I did.

  4. Now I'm discombobulated again, Mary :-) I'm delighted you like this post and that you've set up your account but it is possible to comment without any account, people don't even have to leave their name (real or otherwise).

    This is my test comment to check!

    Toots x
    PS hi Matt, it's great to connect here

  5. It's that old dog new trick
    kind of thing for me you see, slowly I learning how this all works, some blogs I can post and others I can't this is all new will let me post


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