Shingle bell rock

It's been a busy old time of late - hence the utter lack of blogs for December.

Not only has work hit a peak of frenzy, but general home life has too. 

There really has been no hope of resting, even though this is exactly what my MS team have been advising for a while.

They know they're right, I know they're right - and that rightness has now been proven in ANOTHER BOUT OF RUDDY SHINGLES.

Happy Christmas to me.

But I have now broken up from work and am going to try my very, very best to stop.

Not least because I don't want to face another disappointed phone call from my MS nurse.

Never mind Santa, it's her naughty list I really don't want to be on.

So festive greetings from me for a calm, restful, healthy and happy Christmas.

And a happy new year. Although goodness knows what it holds if the last two are anything to go by.

:: Jingle bell rock by Bobby Helms

Relax

Broken up from work for Christmas.

Grateful to have a job.

But very grateful to be able to put on jingly festive slippers and stop for a bit.

Merry Christmas to you in what has been the strangest of years. 

Very best wishes for a new year significantly better than this one.

:: Relax by Frankie Goes to Hollywood

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.

I believe in Father Christmas

Eeeek! It’s only a week away!

Despite the fact that I'm working up until Christmas Eve, I'm trying to embrace the festive joy and celebrate the magic of Father Christmas.

While, as adults, we know that the man in the red suit is actually someone’s relative with an itchy false beard, it’s still utterly lovely to get swept up in the palpable excitement of any nearby young person.

I do wonder how long we’ve got before our daughter stops believing – she’s in her last year of primary school so I fear the worldly-wise sophisticates of secondary school may well put an end to it next Christmas. 

She's also an extremely logical young lady who has started to question quite a lot of the practicalities of the whole billions-of-presents-delivered-in-one-night concept.*

That time will inevitably come, but for the moment, it’s still this year and she’s still a firm believer.

And in a frankly frightening, confusing and unfair world, a little bit of belief that people (in red suits or not) can be good and kind is not a bad thing.

Whatever you’re up to this Christmas, whoever you’re with and whatever you believe, have a happy, healthy and peaceful one.

:: I believe in Father Christmas by Greg Lake

*Frightening how many lies we tell children while drumming into them how important it is to always tell the truth. I’m not sure how much distrust and/or damage we cause, but I’m hoping that ageing and common sense will overcome any feelings of betrayal. Either that, or all those Christmas pud sixpences are going to have to pay for some substantial sessions on the couch as an adult.

Santa baby

Dear Father Christmas,

I do hope you’re well and gearing up for all those deliveries. Don't forget to wrap up warm and make sure your beard is properly protected.

You should have received my daughter's list by now. She's been very good this year and has done her homework without (much) nagging and cleaned her teeth beautifully.

Since we're chatting, Father C (can I call you that?), here's what I'd like for me – and every MSer – this festive season:

A cause, a cure and continual myelin repair, please. Plus genuinely feeling as well as we look. You could make a lot of people very, very happy.

But I appreciate you may not be able to deliver those in time for Christmas 2018. So, on a personal note, here's some alternative options for me this year:

1. Beautiful sky-scraper heels with hidden microchips in the bottom that automatically balance me. I'd quite like to sashay down the street again without wondering where the nearest flower bed is to cushion my fall.

2. A wearable hot water bottle/cool pack suit, which intuitively adjusts to my personal temperature needs, thereby preventing my hands/legs/everything packing up on me when the environment gets just one degree too warm or too cool.

3. This eyepatch. Styling out my eye damage.

4. A flashing badge with a changeable slogan to represent my experience on any given day. Options include: “TODAY I...said stupid stuff in a work meeting because my brain won’t function/cried in the kitchen to hide the worry from my daughter/slurred in public and had to explain the not-being-drunk thing for the 75^th time/inwardly crumbled at a thoughtless comment....BUT I AM STILL GOING.”

5. A machine which allows other people to experience all my symptoms: both the ‘Bam! Gotcha!’ out the blue ones and the constant, wearing, dragging ones – emotional and physical. I'd only switch it on for a short period (unless they’d really annoyed me), but it might help them to get an insight into what I'm trying to explain.

If you could possibly see your way clear to bringing just a single gift from the above suggestions (number one! bring number one!) I would be extremely grateful.

Yours in hope,

Mildly Scrambled xx

P.S. Carrot, milk and mince pies will be in the usual place. I don't mind the crumbs, but please don't let Dasher and Prancer chew the carpet again.

:: Santa Baby by Eartha Kitt

Pandora's box

Me: *Looking at Christmas to-do list, panicking *

MS: *crashing noisily through door wearing knitted turkey hat, arms full of wrapping paper, mouth full of chocolate*

Me: *sighing, putting down list* Oh hello.

MS: *opening arms (and mouth) wide, dropping paper (and chocolate) everywhere* Hiiiiiiiiyyyyaaa.

Me: Well this is an unexpected pleasure.

MS: I know, I know! I'm like an early Christmas gift.

 Me: Hmm, pretty sure I've not asked Santa for you this year.

MS: *pouting, wiping chocolate from chin* Yes, I had noticed. And don't think I'm not hurt by that sweetie.

Me: Well it's just that...

MS: *interrupting loudly* Twelve months of relative quietness. Fifty-two weeks of reasonable energy levels.

Me: Erm, well....

MS: *ignores, continues in louder voice* Three hundred and sixty five days of only minor blips.

Me: Yes, but....

MS: *now at eardrum splitting volume* Thirty-one million, five hundred and thirty-six thousand seconds of slightly uneasy calm. It's not enough for me dahling.

Me: Oh, er, sorry?

MS: Yes, that's right. Sorry is right. Why haven't you seen much of me? Could it be that I've offended?

Me: Well, not offended as such, more sort of....

MS: Could it be that I came on too strong? Too upfront with my attention?

Me: Well, yes, that could be it, I mean...

MS: But my dear, I only want to shower you with the gifts I can give. Gifts like numbness or sight loss or pain. Presents like worry or fatigue or confusion. Gems like falling over or reduced income or fear for the future.

Me: Yes. Not exactly gold, frankincense and myrrh is it?

MS: What is myrrh? I've always wondered.

Me: It's a gum from a thorny tree. Supposed to have medicinal qualities.

MS: Oh. Well, I wouldn't be bringing you anything helpful along those lines would I?

Me: Obviously not. So what is it you wanted?

MS: I told you, I've hardly seen you all year. I miss your little squidgy face.

Me: *nervously prodding face* And?

MS: And what?

Me: There must be something else. I can't believe you've let me get away with limited problems for a whole year when you're causing such horrors for other people.

MS: Well, there is one thing.

Me: Knew it. What?

MS: *scrabbling in pockets and taking out a tiny gold box* Well, it's this.

Me: *surprised* Oh! Is that a present? An actual present?

MS: Of course. It's to remind you of me at this special time of the year.

Me: Oh, crikey. Thanks. *thinks* It's very small. What is it?

MS: *gathering up wrapper paper heading to door* Oh, it's a box of guilt.

Me: It's a what?

MS: *leaving* You know, guilt. Bit of fear in there too. It's small now but it will get bigger and bigger the less you see of me. Happy Christmas.

Me: *Looking at gold box, panicking*

:: Pandora's box by OMD

Christmas wrapping

Crikey, that's another Christmas wrapped up and now we're enjoying the inbetweeny bit.

Time to spend important hours with family and friends.

Time to be thankful for what I have and to stop dwelling on what I don’t.

Time for me to wish you and yours a very peaceful and healthy new year.

:: Christmas wrapping by The Waitresses

I'm still standing

This week's blog has been written by my brilliant daughter. 

She's nine and is the most thoughtful and caring person I know – I learn something from her every day:

When I'm at home I forget that mummy has MS, I always do baking with her and we have made some amazing cakes.

This year has been good and bad - mummy had a eye patch for the start of the year but now she is on tablets to try and stop her having relapses.

She can play with me a lot more and she doesn't get as many headaches.

We can go the park and also decorate the Christmas tree together.

Last Friday, mummy was helping set up at the Christmas fair at my school and I was at guitar, when I came out of guitar she came and gave me a hug and a kiss.

The reason why I chose this song is because I have always known mummy when she has had MS. She has had a few relapses and I have been with her.

So it means that I am still standing even though she has had relapses.
I know we will be ok even though it is sad to see her ill.

:: I'm still standing by Elton John

I believe in Father Christmas

Eeeek! It’s only nearly here.

Feeling a bit festive now, helped by the fact that we’ve just been on a jolly lovely family outing – a steam train trip with Father Christmas.

And while, as adults, we know that the man in the red suit is actually someone’s relative with an itchy stick-on beard, it’s still utterly lovely to get swept up in the palpable excitement of any nearby young person.

I wonder how long we’ve got before our daughter stops believing – she’s a very logical young lady (unlike her mother) who has started to question quite a lot of the practicalities of the whole billions-of-presents-delivered-in-one-night concept.*

That time will inevitably come, but for the moment, it’s still this year and she’s still a firm believer.

And in a frankly frightening, confusing and unfair world, a little bit of belief that people – in red suits or not – can be good and kind is not a bad thing.

Whatever you’re up to this Christmas, whoever you’re with and whatever you believe, have a peaceful one and see you next year.

:: I believe in Father Christmas by Greg Lake

*Frightening how many lies we tell children while drumming into them how important it is to always tell the truth. I’m not sure how much distrust and/or damage we cause, but I’m hoping that ageing and common sense will overcome any feelings of betrayal. Either that, or the Christmas pud sixpences are going to have to pay for some substantial sessions on the couch as an adult.

Comforting sounds

In what I am trying very hard not to make a festive tradition, I spent Saturday in an MRI scanner.

Close to the Big Day as it may be, the 17^th of December was actually pretty good - three years ago I spent an hour-and-a-half on Christmas Eve in one. And while, in comparison to many other medical tests, I quite like an MRI, most people would agree that there are limits to what they will do to get out of the festive shopping.

But the hospital had tried their best – tinsel around the weighing scales and height chart for the pre-scan measurements – and while I turned up prepared with my own CD, I couldn’t resist the option of having the hospital’s choice of festive music piped into the protective headphones.*

First song on was East 17 Stay Another Day which for some reason made me chuckle a lot, until I remembered that the first rule of MRIs is NOT TO MOVE unless you want a stern, disembodied warning voice cutting through the plaintive warblings of Walthamstow’s finest.

It was only a short one this time - just 25 minutes on the gurney with a cage over my face so I didn’t have too long to stay still. Or ponder on the confusing and mildly inappropriate nature of ‘I saw mommy kissing Santa Claus.’

The aim was to get an up-to-date scan of my brain to see what damage is already there before I begin my Tecfidera (which, incidentally, I still don’t have as my MS nurse is still not well.)

The results will form a baseline reference guide to check whether the new drug is working by highlighting any patches of new activity which shouldn’t be there if the drug is doing its stuff. Obviously if I get a relapse which has clear physical impact, I will know about it, but this will also help track and gauge those sneaky instance of damage that indicate silent deterioration.

I’m fascinated by how the varying grey and white patches are interpreted on these scans. I’m also endlessly amazed by how magnets make pictures which make medical meanings.

I do ask my neuro to go through my scans to explain it all and I try to nod knowledgeably while he patiently does so, but as with a lot of things I can understand it for a while before it wafts off into the medisphere and I have to ask him to go through the whole thing again the next time I see him.

I suspect I am not alone in this so I don’t feel too bad. And I can always blame the big white and grey mush he sees on the screen before him.

The only thing I find mildly disappointing about the scan pictures is that my head is not actually sectioned liked the Numskulls with expanded areas for gin drinking, obscure song lyric retention and knowledge of useless trivia.

If I had an MRI scanner that’s what I’d programme it to do. And that would be worth 90 lying still minutes of anyone’s time.

:: Comforting sounds by Mew

*These, by the way, do not block out the repetitive clanking and banging of the magnets, they just dull it a bit. I do know people who drift off to sleep in the scanner – possibly understandable it’s warm, you have to stay still – but I’ve never managed it myself. Perhaps a skill to develop over the next few years as there will inevitably be more close encounters with the tube.

Jump

I’ve been off the Avonex for two weeks now in preparation for my shiny/scary new tablets.

I’ve never really minded the needles or the injecting. I didn’t have too many side effects bar an occasional headache and a few more balance issues than usual the day after.

As a medication, I was okay with it.

Unfortunately however, it was not okay with me and didn’t do the job I needed it to. So it’s farewell to the needle and hello to the tablets.

I had it all planned out nicely, I’d start Tecfidera the week before Christmas on the lower dose then up it the week after the big day festivities.

Yes, I realise that new meds over the most wonderful the of the year is possibly not the best present I could give myself when you factor in the potential side effects and lack of medical availability.

But the cunning thinking in this plan was that I have two weeks off work and would rather suss out the side effects at home than in the office.

So all was well. That is until I called my MS nurse today to check on tablet delivery – and found she’s been off sick for two weeks, will be for the foreseeable and therefore can’t sign my prescription. 

Now obviously, she is allowed to be ill, but argh, so much for best laid plans.

However, there is absolutely nothing I can do about it, so there is no point in getting (as my mother would say) het up about it.

This is a relatively new experience for me, this roll with the punches outlook.

Left to my own devices, I am a planner and worrier. I have plans and back-up plans and just-in-case plans. And a plan B for all of those plans.

But I’ve noticed that increasingly over time I have started to let those tightly gripped reigns go a bit – I don’t know if it’s age or parenting (where very few things go to plan unless you sign up to the Gina Ford school of thinking) or laziness or MS.

I’m very aware that stressing myself out over things I have little control over is neither helpful or productive.

So when it comes to the drugs, I’m just going to have to accept and move on – while enjoying a few more festive tipples than I’d though I might. Always a silver lining.

:: Jump by Van Halen

Footnote: we have one part time MS nurse and one neurologist in the densely populated area in which I live. They are trying to care for thousands of people and it explains why the wait for my annual neurologist’s appointment has now increased to 18months. I’m also aware that I’m lucky to have this level of access and treatment options. However, it is still not enough - but that is a longer post for another time. 

Metal Mickey

*Hums in irritating fashion* It’s beginning to look a lot like Christmas, everywhere you go.

Or it is if that everywhere is my daughter’s school and you’ve just been to the festive fair. If you did, you’d have seen hubby and me in our nylon nightmare reindeer jumpers looking slightly panicked while manning the bottle tombola.

We like doing the bottle tombola, it’s busy and fun and excellent for spotting (and trying hard not to judge) the people who make one too many return visits.

It’s also really interesting to see what gets donated under the guise of ‘bottle’ – this year we had everything from a large bottle of Famous Grouse to a small one of Peppa Pig bubble bath.

People had been very generous and we had an army of bottles, homemade chutneys, jams and bath stuff lined up in logical regimented rows ordered from lowest number to highest. 

I’d spent the day before with other parents sticking the winning numbers (ends in a 0 or 5 you know) to the winning bottles and folding up endless, endless amounts of losing tickets.

When it came to the pressure of the day, I could cope with the maths (50p a go, 3 for £1) and managed to match almost all the bottles to the correct tickets, but like a washing machine and socks, some went inexplicably astray.

Fortunately we have planned for this and stashed some spares under the table so no one went home disappointed (apart from possibly the person who had a clearly unwanted bottle of Worcester Sauce resplendent with a few month's worth of dust. But that’s the exciting lottery of a tombola.)

So we survived, and hopefully raised lots of cash for the school, but good grief I then genuinely couldn’t think for the entire rest of the day.

One of the most frustrating things I find about MS is its stealth-like ability to whip the cognitive rug from under your feet. Or speech. Or thought processes.

If I’ve overdone it (either physically, emotionally or brainpower-wise) my ability to think or speak coherently utterly deserts me. I feel like the lumbering metal figure of Tik-Tok, Dorothy’s wind-up guardian in the really quite disturbing land of Oz.

When Tik-Tok’s clockwork springs run down, he becomes frozen or mute or, for one memorable moment in The Road to Oz, continues to speak but utters absolute gibberish.

And this was a pretty accurate representation of me after the bottle bonanza – but without any of the joy of having actually drunk any of the alcoholic-based donations.

Tik-Tok is unable to wind himself and can stay mute, immobile and useless for hours, days, months or years on end. How familiar that sounds.

This time, fortunately, an afternoon and evening of rest helped rejuvenate my springs. But as the disease progresses my inner Tik-Tok continues to wind me up.

:: Metal Mickey by Suede