Always on my mind

I've had 16 years of MS and for quite a lot of that time I have just bimbled on alongside it - knowing it's there but not really paying it a lot of attention.

Obviously over that time there have been a number of occasions where it's made its presence known in no uncertain terms - during relapses, obviously, when making work and family decisions, clearly.

But for the most part it's just there. Like a big lumbering lump in the background.

However, in the past few weeks, it has really become front and centre almost all of the time.

I'm thinking about it a lot - probably because my pre-Christmas relapse just isn't clearing and I find that I'm struggling against my body most of the time.

My hands are really, really bad - upsetting for both practical and emotional reasons.
The MS hug just will not go.
My fatigue is quite obvious and I spend a lot of my days in a zombie-like state.

Previously, once relapses have started to clear and I get back to a reasonable level of normal, I wonder how I managed to get through that relapse.
This time I'm wondering how I'm doing it at the end of every day.

It's possibly because I've had two relapses hot on the heels of each other, it's possibly because I'm over the 15-year mark, it's probable because I've got to choose new meds and it's also quite possibly because I'm coming up to my 44th birthday.

But at the moment, MS is taking over my thoughts in a way that I really wish it wasn't.

I'm trying to distract myself, I'm trying to think sensibly and I'm even trying to find the funny side (see below pictures) but it's currently more of a struggle than it ever has been. And I'm hoping to find a way to deal with that.

A little Shrove Tuesday game: Pancake or MRI scan?

:: Always on my mind by Pet Shop Boys

I wish it could be Christmas everyday

My younger* brother is visiting this week for half term.

He works in theatre as a technical manager and therefore puts in horrendously long hours pretty much all-year round making sure lights and sounds are perfect for all kinds of shows.

He's only recently finished the panto run and has popped to see us this week as it gives him chance to spend time with our parents and my daughter - who loves it when her uncle comes to stay.

Because he only has Christmas Day off during panto, he misses out on all the usual festivities,  general jollification and, as he's a huge eater, the delights of the stuffing balls.

So to rectify this, we're re-running Christmas Day for him today, complete with crackers, token presents and those kind of family jokes that are hilarious to insiders and baffling to outsiders.

It's lovely to see him.
Merry Februmas everyone.

:: I wish it could be Christmas everyday by Wizzard

* Is younger, looks older. I like to remind him of this regularly.

Bad romance

Me: *humming to self, waiting for kettle to boil*

Letterbox clatters. Huge padded envelope appears on doormat.

Me: Oooooh, early Valentine. *trots out of kitchen excitedly to collect*

Doorbell rings.

Me: *opening door* Hello? *no one there* HELLO?

MS: *Leaping suddenly out of bush and running through door brandishing gigantic red plastic gun*

Me: Oh good grief. *sighs* Hello.

MS: *Pulling Charlie's Angels stance * Hiiiiiiiya.

Me: Hi. And to what do I owe the pleasure this time?

MS: Do I need a reason to swing by and see my favourite little damaged poppet?

Me: Well, no, not usually. To be honest you do just drop in without warning - quite often just when I'm in the middle of trying to piece everything back together from your last visit.

MS:  Aaaah, I like to leave a long lingering memory of myself. A bit like an exotic perfume, the taste of high quality dark chocolate, your favourite flowers...

Me: *under breath* A poop that just won't flush...

MS: *suspiciously* What was that?

Me: Oh, nothing, nothing. Erm, what's that?

MS: Oh! This is my new toy! It's a love gun!

Me: It's a what now?

MS: A love gun! A gun of love! You know, bringing kindness and happiness and joy just in time for Valentine's Day.

Me: Mmmm. Yes. I think you may have got the wrong end of the stick a bit there.

MS: What?

Me: Well, love gun, it's not exactly a gun, it's more of a....

MS: Yeeeeeeeeees?

Me: More of a different thing. Anyway, why are you here with any kind of shooty thing?

MS: Ah yes! Back on to me. I am here to present you with this! *picks up and holds out card* Well, go on, open it.

Me: Have you brought me a Valentine's card?

MS: Ooooh, so exciting! Open it and see! Open it! Open it!

Me: Yes, alright, give me a minute. My hands don't work as well as they used to thanks to your last visit.

MS: OPEN IIIIIITTTTTTTTTTT!!!!

Me: *sighs* Right, opening. It's a..........oh.

MS: I know right? Amazing?

Me: It's not a Valentine's card, it's a letter from my neurologist with my MRI results

MS: I know, I know! Exciting isn't it? It very poetically points out everything that's wrong with you after your last relapse! See all that detail of your defectiveness? See how your current meds aren't holding me at bay? See all that rapidly evolving severe stuff? Spectacular isn't it?

Me: Ah...

MS: Yes! Yes! And look at that bit - the bit that says you'll have to choose a new medication. I know how you simply love doing that, so what could be more suitable for Valentine's Day?

Me: Well...

MS: And that's not all. De de de de derrrrrrrrr *waves gun above head*

Me: I can resort to violence?

MS: NO!! Why would you want to be so mean to me?

Me: Reasons.

MS: No, I've bought you this so you can play a nice little game I like to call Treatment Roulette.

Me: Ah.

MS: Yes! This gun is fully loaded with your options. This one has a risk of cancer, this one can damage your eyesight and this one runs the risk of a fatal brain infection! And guess what, guess what - this really is the best bit - it might be that NONE of them EVEN WORK! Go on. Spin the barrel, pull the trigger.

Me: Hang on, don't I get a bit of time to think about this?

MS: Time? TIME? Do you really think you've got a lot of that left?

Me: Well, er...

MS: Well, of course, take your time if you want, but I'd advise you not to take too long. Never know when I might drop in again. *Pauses* Well, best be off, places to be, mischief to cause.

Me: Okay. Bye then.

MS: *waltzing out door* Byeeeeeeee. See you next time.

Me: *slamming door shut* Oh flush off.

:: Bad romance by Lady Gaga

Pink sunshine

I am still in recovery from my Christmas relapse so am feeling worn out and damaged and generally fretful about where my health, work and life are heading.

However!

Today we had sunshine!

And suddenly everything seems just that tiny bit brighter.

:: Pink sunshine by Fuzzbox