exactly where i'm at

A double-header 'Steve's Little-Helpers' post.

I've been taking Rebif since January 2010, with little-or-no (TOUCHING WOOD FRANTICALLY) side-effects. Weirdly, it's such a massive decision - your Disease Modifying Therapy of choice - but I can't remember loads about the decision-making process.

Rebif is one of many trade-names of Interferon beta-1a, co-marketed by the 'lovely' people at Merck Serono and Pfizer.*

But I know that the things that swung it will have included the RebiSmart gizmo - I am a man of a certain age and I do likes me some technology.

HOWEVER there's something clunky and "Heath-Robinson" about the Rebismart - the whirrs and beeps and clunks sound a bit STEAMPUNK, really.

shonky pic of the RebiSmart screen

It's quite sensitive so you have to insert and remove the needles quite carefully - insert it perfectly straight (or as close as possible), remove by pushing it away from you (see shonky image)

I've had a couple of issues with needles getting stuck (long-nose pliers to the rescue) and - hilariously - the batteries running out when I was in the middle of injecting - "Hmmm, why is it taking so long...?"

The main thing for me is the fact that I don't need to see the needle - if I'm going to be doing this three times a week for the foreseeable future, I could really with it being as UNTRAUMATIC as humanly possible.

And yes - there is an option to check how much charge your batteries have left...

There's even an option to track your injection sites but I've never used that, because I've been using the i-Inject iPhone/iPod app, pretty much since I started on Rebif.

The author on Monday evening

This is quite pricey for an app but it can do lots of helpful things - reminding you to do your injection, email info to your doctor, organising any oral meds, record reactions etc.

The main thing I use it for is to track injection sites, making sure that these are rotated regularly - like most people, I have my 'favourite' sites (front of thighs, my butt) which I could happily keep going for (until the itching reaction just gets too much to take) - this keeps me on track.

Also (unlike other apps I've tried), if you really don't fancy going into a site, you can just choose something else - I'll do anything to avoid injecting into my upper arm (especially my right arm).


* A CYNIC WRITES - last year, Merck Serono brought out a plush magazine and a free iPhone app called MySupport. In my more cynical moments I can find myself wondering - if there's this much money in the treatment of MS (neither plush full colour magazines printed on heavy-stock paper which are mailed out at no cost or iPhone Apps are particularly cheap to develop and distribute) - are we EVER likely to see a cure?

But that sort of thinking is really not helping anyone, is it?

sing about me, i'm dying of thirst

After making quite a good start at the old regular blogging lark in January, things have kind of gone off the boil.

To be honest I've not been feeling ALL THAT - mentally (rather than physically) on a bit of a downer.

Christmas (seems like ages ago now) was good but really tiring. Everybody wanted to see Evie (she is GORGEOUS) so there was a lot of to-ing and fro-ing for us. And then obviously Annabel's death was quite the curve-ball.

In the weeks leading up to the break I had my final sessions of Physio AND CBT. Honestly, it felt like I was being abandoned at some kind-of existential turn-pike.

But it didn't really hit me until much later.

So I can talk a good game as far as POSITIVITY and MINDFULNESS but every now again things can bite you on the ass.

And the old fears are still there. But I know what I have to do to beat them - pushing myself to go for walks (with or without Evie), exercise, testing my bladder retention (sorry, no easy way to say it). But it's hard when the other option (do nothing) is so FRICKING EASY.

In a couple of weeks I've got another appointment with the urologist - it's taken ages to come round. So this weekend I need to fill out a voiding chart - literally measuring everything that goes in and out.

No-one told me that adult life was going to be same damn GLAMOROUS.

So I've decided to post a series of things which GENUINELY help me in all kinds of little ways.

Wooden Tea Tray (seriously)

Like most people with MS I can have problems with my balance.

I remember a short one after my diagnosis going win Emma to a little coffee house. And as she went to buy the drinks, I had one of those newly-diagnosed-person's overly-dramatic thoughts: "I'm NEVER going to be able to buy her food and/or drinks EVER AGAIN!"

Obviously now, after nearly 10 years together, there's a definite element of "I wish" but I digress.

At home I'm the morning person (you can tell because of my sunny disposition, yeah?), whereas she can not be roused without a cup of tea (with biscuits, natch). So over the years there have been many spilled brews, ruined paintwork and much early-morning gnashing-of-teeth (i.e. turning the air blue).

Cups would slide around on plastic trays so I often resorted to holding two cups in one hand, keeping one free for the stair-rail.

Until that is I got my hands on this little wooden beauty. Nice big handles for gripping. Not-too-smooth wooden surface which actually grips the things you're carrying. Plus any minor spillages get soaked into the wood.

It's a little thing. But it helps us to get the day started right.

little victories

On Friday night we had something like six inches of snow - not masses in world terms, but as I mentioned before, we DO like to make a fuss about a little bit of weather in this country.

Where we live is on a side street so it doesn't get gritted. Which meant that on Saturday, our street, our drive and our car were all completely covered in snow.

50 minutes of fun and games with a snow shovel later, I'd got the drive and the pavement outside our house clear.

Yes, I know his isn't a massive deal to most people. But I was SO PLEASED with myself.

So pleased in fact, that I took a photo and sent it to my Dad and my wife.

If you read the comments and followed the links from my post the other day, you'll have seen that both Its a Shit Business and Stumbling in Flats seem to have started something of a mini-fuss about mindfulness and 'positive thinking'.

With this in mind, look upon my works ye mighty, and feel the raw power of what can be done when you don't take any shit* from MS. Or any other chronic condition.
(* if you're able, obviously)

Yes, I can have bad days. Sometimes I feel very sorry for myself.

But when I feel sorry for myself, does it do me any good? Does it miraculously make me feel better?

Does it make my family and loved ones feel good?

Is A BLOODY GOOD MOAN the magic bullet that scientists the world over are looking for?

I don't think so.

So lets pick our battles and celebrate the small victories. Because eventually these little victories can build up into something greater

Small acorns... mighty oaks... well, whaddya know? It's cliché-o'clock!

In all of this I'm not in any way belittling the very real problems that people have through their MS - I'm very lucky that my symptoms are fairly minor.

But there is a tendency (particularly through the dreaded #mssucks hashtag on Twitter) for people to blow up all their symptoms into another relapse or a stage in their (inevitable?) decline.

Like I said above, this doesn't do any of us any good. And it really doesn't help those that live with us.

(And if any of the above pisses you off, leave me a comment. And enjoy the fact that following the thaw yesterday, the only bit of snow left is the pile I created on my front yard when I cleared the drive - I needn't have bothered! But I'm still glad I did)

other blogs are available

The end of a good week, with my previous post getting picked up and reposted by the MS Trust and retweeted by a couple of other people. Nice - thanks a lot.

I had a board meeting the other night - one of the trustees where I work has also got MS and we had an interesting chat about my recent relapse and her almost complete remission.

She was saying that she pretty much has no ill-effects from her MS, and she puts this down to her mental attitude – which is, rather than thinking about all the things MS has taken away from her, she concentrates on all the things it has given her.

Not that this is all 'happy-clappy' or anything - but this all ties into my adventures in CBT and (for example) the idea of naming your MS. 

I fully intended to blog further about this, but this morning I ended up writing most of it in some (long and rambling) comments on this excellent post on Stumbling in Flats. So go an have a look at that.

And while you're off visiting other blogs, have a look at this amazing post, Why Mindfulness is a Critical Tool for Living with MS on Everyday Mindfulnes.

I'm a recent-but-pretty-much-complete convert to the worlds of CBT and Mindfulness but this can be an incredibly powerful tool for "attitude recalibration".

in your face

I'm not a massive fan of snow - that's not always been the case. For a start it becomes one of the many meteorological issues which we - as Brits - tend to get our knickers in a twist about.

But like most MSers, I don't really need anything else to make me feel unsteady on my feet.

However, a work colleague told me about Yaktrax - and if you can get over the ridiculous name, they're highly recommended.

Basically these are snow chains for your feet - I got my pair over massive walking shoes, Emma managed to get hers over her wellington boots.

The picture below shows me walking yesterday on packed ice (note the sexy grey NHS walking stick I spoke of before). Earlier on that day I'd also walked uphill pulling a combination sledge-and-toddler.

In both instances, it felt like I was walking on... y'know, like, a NORMAL walking surface. These things are so good, I didn't mind getting a few funny looks when I planted my feet in snow and tried to do the twist - and found that my feet weren't moving.

Brilliant.

And like the walking stick, it's just something simple which could mean feeling independent in all weathers as opposed to useless and cut-off from society.

Recommended for all but especially if you have mobility / steadiness concerns.

Edited (22/01/13) : I should say that I am not in ANYWAY on ANY sort of commission for my endorsement!

intermission

Question: Why is being in a hospital so FRICKING exhausting?

Last week was my annual check-up with the MS team at the QMC. Emma came with me because I can have the tendency to, not exactly sugar-coat things, but maybe play things down a wee bit.

Long-story-short:

The Neurologist
We asked him if there were any new treatments in the pipeline. He said:

"Not really"

Basically the pills everyone was talking about recently are, as we thought, mostly for people who have two relapses quickly on the bounce.

So you can keep those, thanks mate. *fingers crossed*

The MS Nurse
Our question for her was about the recovery from my last relapse. I know that Emma was a little bit worried about the length of my recovery and my continued weakness.

But as my relapse only (ha!) ended in May, I wondered if maybe this was normal.

Her answer?

"It might be"

Is this a level of clinical vagueness which is particular to MS?

I KNOW that MS is full of all kinds of wacky unknowns - that's one of the things we all love about it. But sometimes...

The Physio
She had a look at the walking-stick I use (which - get this! - was a hand-me-down from my NINETY-TWO year-old GRANDMA. Which is quite something for your ego to take, i can tell you).

Well. Turns out its an inch too small.

TOP TIP
If you stand normally with your stick at your side, it should ideally come up to the knuckly-hinge bit of your wrist.

So she went and got me one that's the correct size.

Yes it's ugly, NHS-grey and probably the SAME model as my Grandma's current one, but it bloody works.

So there.

should old acquaintance be forgot, and never brought to mind?

When I left University in 1995 - with an eminently (un)employable degree in Music and English - I obviously had to spend a certain amount of time being out of work.

Eventually this all got a bit depressing - so much so that I offered to do some voluntary work in the marketing department of a local theatre. I ended up working my way through the ranks, from part-time in the Box Office to full-time in the Marketing Department to an eventual Head of Department role.

This was all before the place closed down and made everybody redundant a couple of months before I was due to get married.

This is no sob story, however. Despite the fact that most of the people working there spent a great deal of time moaning and trying desperately to get work elsewhere (myself included), the people I worked with at this time are the people that we stay in touch with.

I also met the woman who would eventually become my wife there. And it was during this time that I was  diagnosed with MS. So this was the first place I had the experience of 'coming out'.

Emma and me have worked at different places since then - but we don't really stay in touch with anyone from any of them. Certainly not to the same level, anyway.

It's probably the closest I'll ever come to being down the trenches or something.

A couple of months ago, we went to the wedding of one of our old colleagues from the theatre. And I sat at a table with a bunch of people that I don't see from one year to the next but who I would gladly do anything for if they needed me.

One of my favourite people from this period was Annabel - she was the same age as me but she supervised the Box Office team. We worked a lot of shifts together and knew a lot of the same people from the local music scene. She was such good fun and we had a great time, even when working in a fairly crappy job (basically the same as any retail position with more anti-social shifts and dealing with the artistic temperament).

She was married to Simon with a daughter - I think me and my girlfriend of the time used to look up to them as a really sorted couple of cool grown-ups - they had a house and everything! So we had dinner parties and spent New Year's Eve's together, and we had at least one ill-advised attempt at a camping holiday (never again).

Anyway, Annabel changed jobs a couple of times, she and Simon had a couple more kids, life got complicated. We stayed in touch in that modern not-really-staying-in-touch-properly-sort-of-way (i.e. Facebook) and bumped into each other at events around town. Simon works with local voluntary services and often uses space in the building where I work now.

After my relapse last year he called in to see me, when he told me that Annabel had breast cancer. The treatment was kicking her arse so I wasn't able to see her but I was glad to have a chance to hang out with Simon when Emma and Evie were away in October.

After picking up from him on Twitter last week that things weren't going great, Simon called me a couple of days after Christmas with the news that Annabel had died.

Yes, this hasn't got a whole load to do with MS but if anything, this is a major wake-up call that we all need to start looking out for each other.

If you need to tell someone that you love them, do it now and do it often.

And (on an MS tip, and partly directed at myself) stop whining about what might happen with your condition and get on with living your life as best you can.

No-one (MSer or otherwise) knows what's going to happen so shut up and enjoy life because as far as I can tell the other options really SUCK.

RIP AVH x