remember what the dormouse said

This post has been forming in my head for over a week but that pesky REAL LIFE kept getting in the way. Hence writing this at 5 to midnight on a Thursday.

[*shakes fist at reality - again*]

Anyway as I mentioned last time, we poddled off to have a talk from the Queens Medical Centre MS Nurses last week. There were only three other people with MS there, but it was a bit weird for me to be the most obviously disabled person in the room - walking with a stick, that kind of thing.

We had a talk about the various foods which have been shown to mitigate various side-effects. And I quote from the handout:

[to offset Gastrointestinal side effects such as diarrhoea, abdominal pain and nausea]

Eat fat and protein rich foods before capsule e.g. eggs, bacon, sausages, nuts, peanut butter, cheeses (Baby Bel), avocado, full fat yoghurt.

Then we made our way downstairs to get some baseline bloods taken before going to the Pharmacy to pick up 5 weeks worth of Tecfidera - one week at half-strength (120mg capsules) and four weeks at full strength (240mg).

We were told to wait until we'd heard from the MS Nurses before taking our first dose - the bloods were also taken to see if our white blood cell count was so low as to make starting a course of Tecfidera dangerous (thankfully my wife was there to hear this in person - I was all set to go home, stuff my face with bacon and eggs, then neck a capsule - selective hearing strikes again).

When the MS nurse called the next day, she said that my white cell count was back in the 'normal' zone (I'm not even going to try to sound like I know what I'm on about, ok?), which was a relief as my blood tests in June (when I was on Rebif) were fairly unhealthy.

So the following morning I checked and rechecked (and then double-rechecked) that I was taking a 120mg capsule and 10 minutes later it was down the hatch.

The most common initial side effect is said to be some flushing - other than feeling a bit warm after that first capsule, the only other thing was a slight feeling of nausea one night.

I've been trying to watch what I eat - but I must admit I've never really got on with Peanut Butter. But after a childhood as an immensely fussy eater (I didn't eat CHEESE until I went to university, and even then it was only because I'd reached the bottom of the food parcel my parents had sent me away with), I don't like to let things beat me.

On the first day I tried spreading it on a slice of toast (revolting). Then I noticed that Peanut Butter doesn't actually contain any butter (I know, what was I thinking) - so I tried it on a slice of toast with butter (disgusting).

So I lathered the rest of the slice with Jam - now you're talking.

SERVING SUGGESTION

BREAKFAST of CHAMPIONS

Yes, I know that my PB and J is considerably more J than PB.

And it's not something I can eat every day - I just take a capsule halfway through my breakfast (whatever it is) and the same again during my evening meal. I've also joined a closed Facebook group for UK Tecfidera patients which is great - really active and supportive. Although I'm trying hard not to get too excited when people talk about positive side-effects and improvements to their walking and energy levels (but still...).

This week has been a good time to change meds, as this was the week my daughter started school - you think it's scary? We think it's TERRIFYING. But there has been a lot of other stuff to think about.

Tomorrow I start on two capsules a day at the full dosage - I've told my boss that if I come into work a darker shade of beetroot, he's allowed one jokey comment. But no more.

wheel's on fire

We've just had a week away in Italy - this is the first time we've been abroad in six years and the first time we've flown with Young Miss Domino. Any worries we might have had about her were unfounded - I looked over at her when we were taking off and she gave me a thumbs-up while grinning from ear to ear. Furthermore she ate pretty much everything which was put in front of her and charmed any Italian waiter she came across.

We went on holiday with my in-laws which certainly took a lot of the pressure off. Where we were staying was a flat lakeside resort but our hotel was a good mile away from the centre of town.

On the first day I managed this fairly easily (lots of places to sit down along the way), caught a boat to another resort, walked round there, caught another boat then walked back to our hotel. After a couple of lazy poolside days, I tried the walk again in the evening.

This was the low point of the holiday - there's a phrase which we tend to use whenever I walk anywhere: "I've / Steve's been doing some good walking". Well, on this night I was NOT walking good.

I got super-frustrated, proper pissed off and everyone was upset to see me struggling. Me and Mrs.D had a chat and decided to look into hiring a wheelchair for the rest of the holiday - we'd talked about this before we left and though I can be fairly stoical about the fact that a chair is only a tool to help you live your life, it was still a pretty major psychological step for me. But the only alternative was me missing out on half of the holiday for the sake of three poxy Euros a day.

The hotel staff were amazing especially the guy on reception who sorted it all out for us (he could speak FIVE languages, and speak them well - unbelievable and shaming).

I can't deny it was a weird feeling being in the chair (it also made me feel a little bit sick) but at least Ms.D said my chair was "cool".

It was pretty shocking how little other people noticed the chair, and I did get a bit (not so) passive-aggressive with pedestrians.

The pavements in this area of Italy were pretty good but every know and again there would be a pothole or raised cobble - I imagine that this is not news to people who use wheelchairs regularly and / or full time but by the end of the week I (and my father-in-law, my regular driver) had pretty much got the lay of the land - which drop-kerbs were going to hurt me or the chair, which tree roots to approach at a certain angle.

And once we'd got to our selected destination I was free to walk about as much as I wanted to or was able.

It IS a tool, and one which I'll have less qualms about using in the future.

---

Tomorrow we go to the Queens Medical Centre to talk to the MS nurse team about Tecfidera. If all goes to plan I'll leave there with my first stash of tablets.

The two weeks off Rebif have (touches wood furiously) passed without much incident. And if I do find myself thinking about the good old days, I can just look at the massive injection-site sore on my belly (no pictures) from the last time I injected there - over FOUR WEEKS ago, and it hasn't stopped itching yet.

Which has obviously given me the following earworm - you're very welcome!



Roll on tomorrow! *

* genuinely unconscious punning here - sorry

Rebif: a breakup letter - "it's not me, it's you"

Dear Rebif,

I thought this would be a hard letter to write. We've been together for 5 years now and we've had some good times.

You were exciting when we first hooked up - I remember the thrill of those first injections, how much I looked forward to seeing you again.

I loved the clunky Eastern Bloc stylings of the RebiSmart auto-injector, while at the same time using apps to track my injection sites made me feel like I was living in the future. It was the best of both worlds, and on top of all that I was taking charge of my life and the progression of my disease.

And I can't deny you've been good to me - thanks for helping me remain relapse-free since 2012.

But things just haven't been working between us lately - you can't deny it.

I would never sneak around behind your back. But I'm ready for the next stage of my life to begin. I have been getting closer to Tecfidera and I'm hoping things will work out between us. I had hoped you would be happy for us, after all we've been through.

But the last couple of months - even though the writing on the wall is plain for all to see - you've been kicking and screaming like a petulant child.

The injection-site sores, the bleeding, the endless flu-like symptoms, the weakness, the swollen saucer-like lumps under my skin, the bruises.  Surely you can see that it has to stop.

Later this week I'll have my last injection. I'll be taking two weeks off - to get my head together and flush you out of my system. That sounds harsh but it's the way it has to be.

Hopefully I'll then begin my Tecfidera treatment. But there's a chance it might not be possible - it will depend on the results of my blood tests - we'll have to see what happens, I guess.

Thanks for being there over the last five years. I really do appreciate the relapse-free years which you gave me.

But after the last couple of months, I'm officially over you.

Two more shots to go.

Much love,

Steve
x

PLEASE NOTE:
These are my personal experiences of living on Rebif / beta interferon. It worked for a long time and has kept me healthy. I'm incredibly lucky that it was even an option for me, let alone one which I've broadly tolerated. The change in medication has only come about through consultation with MS Nurses and Specialist Neurologists - again, I know how lucky I am.

And changing my medication might not even alter the natural progression of my MS down the line. But it's got to be worth a shot of if makes day to-day life a little easier.

See you on the other side!

lucky bugger

Just a quick post to say that the other week I was visited at work by an Occupational Therapist - actually the same OT who visited me a while back.

We had a good chat about what had been going on and she set about looking about my work environment - previously she had suggested I get a swanky new chair and funky monitor holder, so she was pleased to see these in action.

Then she had a look at the layout of the office. Barring a couple of drawers and a filing cabinet, this is what the room looked like - I know, these illustrations are frankly amazing - and I'm not even a professional draughtsman!

layout one

She watched me walking through the door and getting to my desk. And said with beautiful simplicity, "Why don't you move your desk over?"

It's always annoying when someone points out something so blindingly obvious. But it's amazing the difference it has made. Check it out (honestly, no training or anything - you could almost be there...):

layout two

Another way in which I'm incredibly lucky is that, on the afternoon before he went on holiday, my boss helped to get the room straightened out - crawling around on the floor, trailing cable, making sure it worked.

I know there was probably a bit of pre-holiday demob happiness at work but still - he didn't need to.

As I've said before: COME AND WORK IN THE ARTS - the pay is shit, the perks are few but you'll [mostly] end up working with nice people.

up and down like a bride's nightie

The magnificent John Shuttleworth (Sheffield's premier songsmith) yet again sums up my life. Warning: this song contains a slightly blue lyric.



So I finally got a letter from the neurologist who had eventually seen my MRI. At the top of the letter was the following titbit:

In a truly mind-boggling display of my inability to see the bright side, I read this as I don’t have Secondary Progressive MS YET.

After being told to actually read the bloody letter properly, I realised that this was the same as me saying that I don’t have cancer or ebola yet – e.g. while this is true at this point in time, it is no more useful than me saying that I haven’t been run over by a car YET or I haven't lost a limb in a bizarre gardening accident YET.

So I eventually accepted that this was the good news that I hadn’t allowed myself to expect.

(although the reference to a "very pleasant gentleman" made me double check that this letter wasn't intended for someone else)

I think my problem is that I know the way that MS tends to play out – 10 years after an initial diagnosis of relapsing remitting MS the majority of people (as high as 80%) will be re-diagnosed with Secondary Progressive MS. Subconsciously I was trying to prepare myself for the worst. And yes, I know that this is probably the way that this beast is going to play out but it's not particularly 'mindful'. Or healthy.

So earlier this week I toddled off to the MS Nurses to talk about my switch to Tecfidera... which was a less upbeat meeting than the one we had before.

The Nurse wasn't quite as sold by my need to change medication, quoting much more conservative relapse-rate stats, as well as pointing out the two (so far) instances of Progressive multifocal leukoencephalopathy (PML) in people taking Tecfidera - one fatal.

An aside: PML would be the correct acronym for 'Piss Myself Laughing' - and yet PMSL seems to be the favoured choice amongst 'young people' in their illiterate texting. What a world we live in...

Seriously - these are the things which wind me up! I am an OLD MAN.

According to the nurse, in these cases the doctors hadn't known to check the white blood cell count of patients before starting the therapy.

I'd gone into this meeting expecting to be sent away with a prescription so this was a bit of a kick in the teeth. But I went off to have my bloods taken there and then, prompting the following waiting-room hilarity...

I'm a teenage phlebotomy #ramones_based_hospital_fun pic.twitter.com/bKLbWTqM5w

— Steve Woodward (@stevedomino) August 3, 2015

Another Aside: There's an Italian-themed coffee shop by the entrance of the hospital. I repeat - this is in a HOSPITAL. This coffee shop is called Fonta Nelle... FONTA NELLE... Fontanelle? Just me?

So I was really pleased to get a call from the MS Nurse team yesterday - although my white blood cell count is on the low side, this might be a side-effect of Rebif. Aside from that, there's no reason for me not to switch meds.Yay.

I'll take a two-week break from Rebif (handily coinciding with a holiday we're taking) then toddle off to the QMC for more blood tests, another chance to get any further questions answered, and then I'll hopefully walk out with my first load of pills.

I know that this could be the start of a whole OTHER world of issues but I am so over injecting. The side effects from the pills can't be as bad - can they??

frustration

image from http://www.samstoybox.com/

I guess that I was expecting a bit too much from my annual MS MOT, which happened earlier this week. I've been trying to gently process my thoughts ever since.

In light of our conversation with the MS Nurse the other week, my MRI scan last month, my physio appointments, plus a visit from an occupational therapist.... I was hoping for some clear answers, a roadmap of next steps, maybe a change in medication.

But obviously we're talking about MS here - clear answers and a roadmap? Don't be silly.

First up - the Neurologist we saw was absolutely brilliant and answered our questions clearly and with great patience.

Unfortunately, he didn't have any results from my MRI, which was frustrating but can't be helped.

But without any hard evidence, he can only base his opinion on a few physical tests in his office and what we tell him has been going on. And this is where the problems begin.

My wife and I left his office with two completely opposing ideas about what we heard!

HER TAKE:
It sounds like Steve might be heading into a transitional phase between Relapsing & Remitting MS and Secondary Progressive MS - but without any evidence (which will come from the MRI) we can't know either way - everyone's MS journey is completely individual so let's hold off from making any changes to medication until we know a bit more about what's going on. It's not a done deal by any stretch of the imagination.

MY TAKE:
It sounds like Steve is heading into the transitional phase from Relapsing & Remitting MS and Secondary Progressive MS - so there's no point in making any changes to medication. It's probably a done deal but the MRI will tell us more about how F**KED you really are.

And there, distilled, is the essence of our marriage. I think we can all agree that she's a lucky lady.

So now we wait a bit more. The Neuropathic Pain I mentioned last time might ironically be the brightest spot on the horizon, at least indicating that my MS is active. What a crazy condition this is.

But more GENUINELY positive is my Physiotherapy.

It's bloody exhausting but the weekly noticeable improvements to my walking speed and stamina are really giving me the boot up my (lazy) arse which I apparently need.

pinch, punch, first of the month

This may turn into one of those posts which I start with no clear idea of the outcome. But rambling discursiveness is what you come here for, right?

As part of my drive to get STUFF SORTED OUT, I recently had an MRI scan. This is my first since the one which led to my diagnosis 10 years ago. That experience has loomed large in my head ever since - probably (definitely?) in an exaggerated format...

FOR EXAMPLE: When I think about that, the MRI is like something from 1960s Russia - a darkened room with a window onto a control room with two faceless white lab-coated technicians in it. The MRI itself is a dark, airless metal tube.

I know full well that my memory is employing an amount of artistic license...

This time, the room was filled with natural daylight - the machine itself pumped a good amount of fresh air into my face. The (bloody lovely) technicians offered me a choice of radio stations so I plumped for the Radcliffe and Maconie show on BBC 6 Music - their trademarked brand of whiffle and banter was the perfect soundtrack to what was actually a pleasant experience.

I think it helped that also waiting for an MRI was a no-more-than-three-year-old child - he didn't really know what was going on but the look of fear on his mother's face convinced me to MAN THE F**K UP. I've thought about him often since this happened.

So now I wait for my annual MS MOT which takes place next week where we'll discuss what happens next as far as Disease Modifying Therapies are concerned.

I'll be honest, I'm feeling a LOT of THE FEAR.

Are the problems with my walking (which has really degenerated a terrifying amount)...:

• Related to my age?
• Because I've not been doing any regular walking to speak of? (a correlation to the "Use It Or Lose It" argument which I've used in the past)

Or is it rather...

• Because I've transitioned into a re-diagnosis of Secondary Progressive Multiple Sclerosis?

I've started another course of Physio which has shown me that I really have no core strength at all, which would imply that I can turn it around if I want to. And after my session earlier this week, my Physio commented that I was walking better, as did my boss when I returned to work. So this all gives me some hope (and no little motivation to stay focused).

But... but... but... see my third point above.

A new symptom (Neuropathic Pain - in my case a feeling like there's burning hot ash somewhere under the skin on my back) is also cause for concern, coupled with the fact that I haven't had a relapse for 3-or-so years.

And here I was thinking this was a good thing.

Speaking of good news (which we kind-of weren't), yesterday was the first time that I was permitted to wear shorts at work. I'm always more comfortable with my legs out but as a member of the Senior Management Team (and fully paid up member of the CULTURAL ELITE), such activities are frowned upon.

But, y'know, heat intolerance and suchlike.