Wednesday 5 March 2014

as we go up, we go down

So my MS MOT was as exhausting as always. Who knew sitting in a hospital all day could be so tiring!

We got there in enough time to grab a coffee before we made our way to the waiting room to do some GRADE A WAITING.

For some reason they always have a TV tuned to a programme which features somebody you'll never meet buying (or selling) a house (or an antique) that you will never visit (or see). If you're really unlucky it's a mawkishly sensationalist programme about somebody you'll never meet having some kind of 999 Emergency.

The neurologist was obviously running behind because the nurse asked me if I wanted to see the physio straight away. I didn't have anything in particular that I needed to say to her but it beat the heck out of sitting in the waiting room.

We had a quick chat about my intermittent adventures with walking and swimming and the benefits thereof, before she had a quick look at the stick which she had given me last time. She thought it looked a bit worn and rickety so she toddled off to get me a new one. Very nice!

Then it all started to go a bit wrong.

The main thing I get from these sessions is a talk with one of the neurologists - to talk about treatments, future developments, and to check that the drugs I'm on are the right ones.

But the door we entered was marked Registrar. Now, this is probably a very high pressured position, requiring a dizzying amount of training, education and commitment. I'm not belittling it and I certainly couldn't do the job.

However, this particular guy took TWO mobile phone calls in the five minutes I was with him - at one point he sent a text message while I was answering one of his (borderline incoherent) questions.

Me and Mrs. D just goggled at each other. During the 2nd phone call, she walked out to find a nurse in order to make sure we could talk to someone else as soon as possible.

When he got off the phone (2nd call) I asked him to turn it off but there was no point as he was rapidly winding up our chat.

The NHS is a wonderful (if woefully under-resourced) thing. And the team was obviously under-staffed on that particular day.

But this is the ONLY chance I get to talk to a member of the team from one year to the next.

Obviously I can call the (fantastic) MS Nurse team anytime, but often then I'll be in the middle of a suspected relapse. Advances in research and / or the latest medical interventions are not at the top of my chit-chat list.

We eventually had a really good talk with the head neurologist. In summary:
  • Rebif is still one of the first-line treatments they prescribe and as I'm tolerating it well (and because it has been two years since my last relapse with no new symptoms of note), there's no real need to monkey about with my treatments. Most of the newer treatments are designed for people with much more advanced symptoms.
  • If my Disco Legs continue to plague me, I could stand to increase the Gabapentin dosage (I currently only take 300mg a night).
  • We had a good chat about Vitamin supplements (basic advice: FILL YR BOOTS WITH VITAMIN D)
  • Also my most recent blood tests (if there are no family members reading this, I'm a little bit anemic - if I'm related to you, EVERYTHING IS FINE)
So nothing new. But it was nice to hear it from the top.

If we'd have left after seeing the Registrar, we'd be thinking what was the point?

Monday 3 March 2014

life in miniature

Example Doll's House Walking Stick
My daughter's current obsessions are:
  • Mr Men books (particularly Messrs Grumble and Forgetful)
  • On-going Kermit obsession (YAY!)
  • Doll’s houses

Particularly my wife's old doll's house, which they are spending a lot of time fixing up (with Granny). The amount which you can spend on Doll's house bric-a-brac is frankly astonishing. But the best place to get new stuff is our local Sue Ryder shop – so that’s something good.

One of her last purchases was a family and some bits and bobs of furniture, which included a hat stand with umbrella and walking stick.

Evie spent a fair amount of time at the weekend trying to get the 'Daddy' of the family (surprisingly effeminate, actually) to hold the stick.

That was a bit of a lump-in-the-throat moment, but on reflection I think it's pretty cool. She's very matter-of-fact about getting my stick for me before we walk anywhere, and I think she has a healthy awareness of the NORMALCY of DIFFERENCE, if you follow me.

Her favourite TV show is the brilliant Something Special, which is a lovely show for kids with learning difficulties. They also sign a lot using Makaton on the show, something we find ourselves doing too!

(NB Justin is worryingly ubiquitous as far as kids TV is concerned but Something Special buys him a lot of grace)

She's also matter-of-fact about the fantastic presenter Cerrie Burnell – I still can't believe that some parents complained about her when she started presenting, rather than using her to educate their kids that not everyone is the same.

Gah – people.

I had my annual appraisal at work last week. We never discuss my health in anything but the most rambling and discursive manner – so when I got the notes back, I took offence to the section which said Steve "had a good year physically and although feels tired at times manages this well".

I know, he means well. But it really has nothing to do with my work over the last 12 months. I asked him if he gets tired.

He removed the offending line from my notes.

As an aside, Evie also accepts that Daddy's legs sometimes "get tired". But she’s not yet three years old.


HOUSE news – ours will be on the market by the end of this week. There has been much STUFF happening with the neighbours but I'm aware that I don’t want to endlessly bang on about it all the time. I might try to do a compendium of recent activity. Or I might wait until we move. Who knows?

Tomorrow is my annual MS MOT with the neuro team and MS Nurses at the Queen's Medical Centre – should be fun (and/or physically / mentally draining).