Thursday 28 February 2013

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?

Friday 22 February 2013

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.