drugstore cowboy

So I've now become the kind of person who needs a pill organiser. After a few too many times when I've forgotten to take my Tecfidera (even though it comes in packets arranged by day of the week with AM-PM time-slots) and the very thought of forgetting to take Fampyra (because I'm paying for those), my wife bought me this snazzy little number.

I know I could take doses out of order but I like being able to see that I've taken my dose (or definitely missed it). The mental gymnastics required to think, "OK this capsule is from Tuesday PM which translates to Sunday AM", is simply too much to bear. PLUS Fampyra is packaged up two-by-two as doses need to be taken 12hours apart.

There are a lot of variations - join with me on a trip through my day!

Pre-breakfast:
- Fampyra dose one
- Mebeverine dose one (faecal urgency)
- Solifenacin (bladder urgency)

Post-breakfast:- Tecfidera dose one
- Vitamin D3 5000 iu x 2
- Flaxseed oil capsules 1000mg x 2*

Pre-lunch:- Mebeverine dose two

Pre-evening meal:
- Mebeverine dose three
- Fampyra dose two

Post-evening meal:
- Tecfidera dose two
- Baclofen 5g (nighttime leg spasms)
- Gabapentin 300g x 2 (neuropathic pain)
- Flaxseed oil capsules 1000mg x 2*

(* The Flaxseed Oil capsules are recommended as part of the OMS lifestyle diet. They are also proper horse-sized so they don't fit into my organiser)

I was sorting out my organiser when my brother paid me a visit recently. He was pretty horrified (I think his actual quote was something along the lines of, "How does one person take all those drugs and not die?"), although he was quite impressed with the tin Mrs. D bought to keep my stock in.

I laughed off his concerns at the time but viewed as a list on here, it does seem a bit much.

How many tablets /supplements are you taking?  And which if any do you think you could cut out?

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?

final countdown

You find me on my last working day of the year. As you can tell, there are many pressing issues which need to be dealt with, so I'll keep this brief.

For instance, as soon as I've finished writing this, my desk will be getting a damn good cleaning.

Before I get started, I just wanted to say thank you to anyone who has read this blog this year, especially if you left comments. It is so cool to know that I'm not just talking to myself!

So what's been going on?

I've realised that posts have been so sporadic on here that I haven't shared the final findings of my adventures in Urology. A couple of months back I was signed off so it's now all down to me – but before then, I switched from Oxybutynin to Solifenacin Succinate (which is apparently pronounced "Sol-if-en-ass-in suck-sin-ate", which really appealed to my childish sense of humour).

According to my nurse SS is a more sophisticated drug than Oxybutynin – it's designed to only affect the bladder, as opposed to REMOVING ALL MOISTURE FROM YOUR ENTIRE BODY.

I seem to be getting on with it really well so if anyone is going down the urologist/bladder retraining route, ASK FOR IT BY NAME TODAY. And now you know how to say it too. You're very welcome.

Recently we all had a dose of the old Norovirus – which was just SMASHING.  I had this before and wrote about it but it was exactly the same deal as previously – so, forewarned, it was easier for me to deal with this time.

Same as before, I found that my MS symptoms were ramped up to Relapse level – which is terrifying when you don't know what's happening.

In one particularly glamorous moment, I knew that I was about to be sick – but as my legs were being completely uncooperative, the only way for me to get there was to:

• Shuffle off bed
• Stand/wobble
• Calculate distance to bowl as being in the same ball park as my own height
• Fall over
• Place head in the bowl
• Vomit

Quite a sight for my wife to walk in on, I think you'll agree.

This particularly nasty little virus has gone through (as it were) me, Mrs D, my daughter, my parents, my brother, my sister-in-law and mother-in-law.

This was all over a week ago – my appetite is only just returning to normal, and I've lost a frankly shocking amount of weight. As this is something I've talked about before, I'm genuinely looking forward to getting properly stuck in over the Christmas break.

God help anyone who gets in the way of that last sausage roll.

--

In other news, my latest post on MultipleSclerosis.net is A ChristMS Carol – the language is cleaner, the message is more optimistic, but it's still me, I promise!

However you mark this time of year, I wish you all the merriest of Christmases and a Happy New Year.

back to the lake

(not really but this was the most relevant song title on myPod for the name of this blog - by the mighty Guided By Voices, obviously)

So a couple of weeks back we went away for a family holiday and we went to the Cotswolds - readers with long memories will recall that the Cotswolds was the place where I started to feel the beginnings of RELAPSE2012.

I must admit that I felt some trepidation but this time we were going with some support - Mrs Domino's parents and wider family. And it was great.

The weather was pretty, erm, British, but it didn't keep us indoors and despite that we spent a lovely week in a lovely part of the UK, walking about and looking at lots of lovely things. It was lovely.

We were close to Broadway, a place I mentioned before - if anything, there are EVEN MORE disabled parking spaces than I remember, and there are at least TWO Gold-medal-winning public toilets there (I must have missed the awards ceremony), plus dropped-kerbs a-plenty.

It was as great as I remember, plus I'm slightly more mobile than I was when I was last there. I even managed to walk up Broadway Tower this time.

Anyway, it was a great break and good to have others around to take the pressure of me and Mrs D. Travelling down was good this time too (there were MANY toilet stops last year...). ONWARDS AND UPWARDS, eh?

The return to work has been tiring, not helped by having a breakfast meeting on the second day. I've spoken before about my hatred of meetings but this is a whole new FRESH HELL. It was quite pleasing to see that every one of my colleagues who was in attendance was every bit as knackered as me for the rest of the day.

As such, I've not been managing to walk into work as regularly as I would've liked but I really need to stop beating myself up about it. Funnily enough, it's a lot easier to do it when the weather is good (and similarly easier to just jump in the car when it's p*ssing it down).

Who would've thunk it?

I've started taking Vitamin D - is it making any difference? Who knows! But I'll keep doing it in the hope that it helps.

Fellow blogger and regular commenter Swisslet wrote a really interesting thing the other day about MS and weight-loss. This is something that has happened to me recently - as I commented to that post, I was a bit pudgy growing up but have recently gone down a trouser size for the first time in ages. I'm also the lightest I've been since school, all whilst eating like a fiend.

A quick Google to see if this was another, less-documented side-effect of MS threw up...well, not much, other than this thread on an MS Society discussion forum - and this comment in particular:

My husband was losing weight and had no appetite so our physio suggested we see our GP and ask for blood tests to be done. The result was he has an underactive thyroid, which usually causes weight gain, but in some cases causes weight loss. Then our GP told us it is quite common for people with MS to have trouble with the thyroid which is another immune system problem, which of course no one tells you about.

Interesting, no?

the magic number

Just a quick post while I try to eat my lunch – apologies for any spelling mistakes! (more than usual anyway).

So today I called my GP for the results of my Vitamin D test (which I had over a month ago).

She started off by saying that neither her or a colleague could find any information about Vitamin D and its effect/impact on MS.

To which I said that it’s spoken about on the MS Society and MS Trust websites for a start.

So eventually she said that the average result for healthy people is between 50 and 100 (sorry for the vague numbers, she probably told me the unit of measurement but I was quietly fuming by this point).

Anyway my score is 38 – a little over a third of what it should be (i guess) but not low enough to be deemed 'insufficient' (which is 25 and under).

She said that she wouldn’t have a problem prescribing some supplements but that I could go and talk to a chemist to get a steer.

Thanks for that (another slow hand clap,please).

So my question to you is:

• Do you take Vitamin D supplements?
• If so, what dosage do you take?
• How did you come to that decision? Finger-in-the-air guess or consultation with a GP / MS Nurse?
• Should I just go and live in Italy instead?

I know that I’ve had some comments about this before (which seem to back up the European Food Safety Authority view that 4000 can be taken safely) but all help / guidance gratefully received.

the horrible truth

Feel (and hear) my pain...
In my defence, I had to submit three news stories in advance to discuss. When I arrived at the station, I was kept waiting in reception until 11.14 (I was due on at 11.15) - when I was dragged up to the studio and plonked into a chair behind a microphone.

Quick hello to the presenter (I've been on with her before) and we were off.

The three stories I decided to talk about were something to do with the local theatre, then something about the new Culture Secretary (as I said before, Derby's Cultural Elite), before we talked about the thing I really wanted to get onto - MS Awareness Week.

Obviously, she decided to flip the order and go straight for the jugular, which is why - IF YOU CAN BEAR IT - you'll actually be able to hear me flapping. In the break in our chat she did say that she would've told me what she was going to do if I'd been brought into the studio earlier.

Man, do I really use the word "STUFF" that much? And me a fricking English Graduate.

If you listen carefully, you can actually hear me physically groping for words. I think I even managed to avoid describing what MS actually is - informative. And I seemed to get really stuck on the word AWARENESS.

Anyway, it makes me want to die of embarrassment and I forgot to mention so many things but people tell me I did OK.

By the time I talked about the other stories it was much more chatty - like I'd warmed up. Which is what I would have ideally done if I'd left the MS story to last.

MsCrankyPants - if you're reading this, I'm guessing that you'll also have a Vanessa Williams power-ballad in your head right now - "Just when I thought my chance had passed, you go and save MS to last"

Like I said, Cultural ELITE.

In other news, I called my local GP surgery to find out the results of my Vitamin D test - they said there was a note that I needed to either see my doctor or make an appointment to have a phone conversation with her. So I'm calling her Wednesday lunchtime - should be interesting.

eat y'self fitter?

Thanks to the mighty Jackie Zimmerman for tagging me on Facebook for this video. All praise unto her, etc. etc.

Since I was diagnosed way back when I've been conscious of the need to eat well in order to stay healthy generally. I've been a bit cynical about all the "Eat Yourself Healthy" books I saw in my first trawls around the Internet upon diagnosis but this is interesting nonetheless.

Check it out.


As Mrs Domino is a vegetarian, nothing in this video is a massive shock - when I do eat meat, it's always organic, we eat a lot of vegetables and are pretty healthy lifestyle-wise. Not sure about eating plates of offal, but the rest is pretty-much par for the course.

Anyway - this post is also an excuse if any were needed to share this song by The Fall - any readers outside of the UK who have been taken in by Downton Abbey, Four Weddings and a Funeral, Upstairs Downstairs and the rest, THIS is what the majority of resdients in England both look and sound like.

It is my job to pass on Truths. You're Welcome!

well, well, i am bad

(not really)

But 'Leonard' by Sharon Van Etten was soundtracking writing this post - in much the same way that she soundtracked my relapse last year - memories...!

Anyway, that title is preferable to "the waiting is the hardest part" which sprang immediately to mind - and I can't hear Tom Petty anymore without having flashbacks to the 4 hour (FOUR HOUR!!!) documentary that i watched a few months back.

I'm a sucker for a music documentary but seriously - "exhaustive" doesn't even come close.

So on Saturday i went to my local walk-in centre to get some blood taken which will get sent to get my Vitamin D levels - this was on one of the sunniest days we've had in ages, the irony of which was not lost on me as i waited for about an hour while my wife and child played at a nearby park.

Anyhoo, we'll see what the tests say.

I find myself in a weird position of hoping that the levels are low so that I can actually do something positive about them - y'know, like I want to be ill enough to take a massive supplement.

--

I've been somewhat distracted while writing this post by the news that Margaret Thatcher has died, aged 87.

She was the Conservative Prime Minister for 11 years, and throughout her term continuously demonised the weak, the poor, the ill and the disabled. She also tried her damnedest to dismantle the Welfare State in this country, with policies that were vile, pernicious and downright evil.

It's ironic that she has died on the same day that sweeping changes have been made to the way that Disability Benefits are paid.

She would have been 'proud' of what the current government is trying to do.

And I hope it's warm enough for her where she's (undoubtedly) going.

quickie

So Gabapentin is great for my leg spasms - and it also means I sleep like a log (and snore like a warthog - sorry Mrs D!).

It beats spending another night at the Disco(Leg)thèque anyway.

I feel a bit woozy in the morning but I like to think that adds to my charming muddle-headed slacker persona at work. Let's see how it works out on days when I actually have to do some real work!

This morning I went to the doctors so I've got a scrip for getting my Vitamin D levels checked out - there has been a lot of talk in various MS-related circles about this recently. - so will be checking this out soon.

A friend of mine who has Chronic Fatigue Syndrome had this done recently and found that her levels were something like 15% of what they should have been - she says that the supplement she's been taking since then has improved her tiredness, muscle and joint pain. So it's got to be worth a go.