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

The fear

Yikes!

Yikes, yikes, yikes, yikes, yikes.

I've had my first bloods back after my first course of Cladribine. Lymphocytes are on the pretty blinkin low side.

I've just about avoided having to have any anti-viral drugs and have simply got to hope they start climbing again.

I knew they would put me at increased risk of infections but knowing how low the numbers are is pretty worrying.

So, to avoid spiralling into unhelpful panic despite what the results may say, I am trying to be both practical about what I can do to help now and positive about what this might mean for the future.

Because MS is all about the long game - and a hefty amount of hope.

:: The fear by Pulp

Quicksand

The past few weeks have been a bit of a challenge.

Work has been overwhelming, friends and family have needed support and the general gloomy weather and unnerving news cycle has seemed relentless.

Then running alongside all this is the knowledge that my body is starting to fail me in new and unsettling ways.

The constant MS hug is second nature now, but nonetheless exhausting for the familiarity.

My slower thinking and reduced ability to make decisions as the day progresses and fatigue hits is more noticeable this year compared to last.

My walking, balance and dexterity have been affected. My stamina is not what it was.

And the general lack of confidence in my abilities that I've always had, is translating into exhausting emotions.

I'm pretty much running on empty all the time, but with the knowledge that the tough days are more frequent than they used to be. 

And, worryingly, the fact is that this may still be the best that things can get.

While I'm not completely drowning yet, I am starting to sink. And although I've pulled myself up on quite a few occasions in the past, it's getting harder to know how to do it again.

:: Quicksand by Tom Chaplin

Express yourself

You can go along, can't you, quite happily bumbling on feeling generally pretty ok about things.

Even when those things include a progressive illness and some boxes of drugs that turn up with 'toxic' stickers plastered over them.

Yes, you think, this is ok, it's manageable. It's my life and people are generally aware of what it means for me.

I've recently had chats with one of those people about the impact MS has on me and the difficulties it throws up for many aspects of my life.

We've talked about my new meds and the implications of what they meant - that I'm progressing more rapidly than thought, that the big drugs come with the big side effects, that there's no guarantee they will work. 

That my life is a bit more complicated than it may appear on the surface.

And just when you think they may have understood, they make a throwaway comment which indicates they really haven't.

So, do you pull them up on it - or just let it go for fear of being seen as a whinger, over-reacting or someone who has thoroughly lost their hitherto reliable sense of humour?

A few years ago I might have brushed it under the carpet and carried on, not pointing out that actually that what they said was quite hurtful. Not just to me, but to others with disabilities.

This time I mentioned it.

The next morning I got an apology. 

It's really, really difficult to call people out on things. It's sometimes even more difficult when it's a friend. 

But if there's one thing we should all be aware of, it's that words matter and we shouldn't be afraid to speak up.

:: Express yourself by Madonna

Autumn almanac

 Oh, it's been a joyous week off work.

A week with husband and daughter. Slightly limited on options, but not on fun.

We've been chasing through leaves, snuggling with films, chomping on treats and laughing a lot.

It's most certainly been an appreciate-the-moment sort of week.

Autumn almanac by The Kinks

Statuesque

Oooh, it's been a couple of weeks hasn't it?

Sorry.

The reason for this is simply an incredibly busy work schedule.

I picked up a new part-time contract in the summer, which has gradually expanded to nearer full-time.

It's in the communications team of a large organisation - and one which has found itself even busier than usual due to the current horror show.

I'm there to do the 'business as usual' comms that are still going on round the edges of the crisis stuff.

And, surprisingly, there have been quite a few. It's been quite a test - although the work is familiar, the speed and volume is quite a pace on from when I last did this kind of work.

So, my MS brain struggles. I'm not with people to ask all the questions. Plus, technology.

Although it's been quite tough and I have had a fair few sleepless nights, I haven't made a total hash of it (yet) and should probably feel quite proud.

I've also done it through the stress of starting new meds, the increased worry of infection and, like the rest of us, being in the middle of AN EFFING GLOBAL PANDEMIC.

The super exciting comms things so far for me have been the launch of a new music festival and the celebration of an iconic local music venue.

It's been a delight - not least because although I am surrounded by chaos, I am also surrounded by music.

And there's nothing nicer than that.

So in honour of their confirmed appearance at the new festival, I'm paying tribute to one of the acts with this week's tune.

They were a Brit Pop fave and, after making it through the past fortnight, I do feel like I should stand a bit taller.

:: Statuesque by Sleeper

Wishin and hopin

 First week of Cladribine done. I didn't explode.

But I did feel very tired and quite wary of touching anything, especially as the pack of tablets came wrapped in yellow and black wasp-like warning stickers with TOXIC written in a most unfriendly-like manner on them.

So week one down, week two to go. That'll be later this month.

And then nothing I can do except take care of myself, avoid people with any kind of bugs and just return to the default MS position of simply hoping that they'll do some good.

:: Wishin and hopin by Dusty Springfield

Here I go again

In an unexpectedly speedy turn of events, today is new drug day.

Woohoo, obviously.

I'm switching from Tecfidera to Cladribine. I am quite scared.

Which explains this week's pie.

:: Here I go again by Whitesnake

Just like a pill

 I need to start new drugs.

Tecfidera, that friendly little green (blue? aquamarine?) pill which has been with me twice a day for more than three years now, is no more.

My latest MRI scans and two relapses in eight months show that I need something more effective.

So I'm supposed to be swapping over to Cladribine at some point soon. However, this depends entirely on:

* my lymphocytes returning to a normal level

* the two hospitals I'm under communicating with each other

* the coronavirus infection rate which could well dictate whether or not I can start

All three requirements are things that are completely out of my control. And I don't like it.

You'd think I'd be used to having no say over this aspect of my life - more than 16 years of unpredictability should have sunk in by now.

But it's hugely frustrating and what concerns me is the unknown length of time I will be without any meds versus the ever-present risk of a relapse.

It's a bit unnerving.

So, to deal, I am taking on extra work hours (distraction and alternative worry) and reading dystopian fiction (distraction and someone else's worry.)

Not perfect solutions, but in an imperfect situation they will have to do.

:: Just like a pill by Pink

Harper Valley PTA

Unbelievably, because the last time I looked she was toddling about demanding repeats of Peppa Pig, our daughter has started secondary school.

Quite the milestone at any time and quite the occasion at the moment.

She's entered her secondary school education at a time of bubbles, masks and social distancing in the corridors. 

Where they're keeping two metres from teachers, hand washing compulsively and not being able to share the exciting back to school stationery with friends.

But despite all this, she is having a wonderful time - new friends, new subjects, new opportunities. She's even enthused about the fairly lengthy walk (hasn't rained yet) and the homework (all very gentle at present).

I do hope this lasts. Both the enthusiasm for learning and the ability to stay at school for at least a decent chunk of time.

But with Covid-19 infection rates on the rise again and other local schools already sending some year groups home, we can only keep our fingers crossed.

This year has been tough on everyone and particularly tough on children. It would be nice if they could return to some sense of normality - even if that normality comes with added homework.

:: Harper Valley PTA by Jeannie C. Riley*

* NB as far as I'm aware, my daughter's school does not have a PTA like the one described in this week's song, but I do like the story.

Happy

My dad loves penguins, genuinely adores them. 

Over the years, many a birthday card, fluffy toy, pairs of socks and a few hats have come his way featuring the beloved bird.

So when he turned 70 last year, there was no question about what we'd be buying him.

Our local zoo offers the chance to get up close and personal with (coincidentally) 70 black and white waddlers of the Humboldt variety.

And, despite Covid, we managed to get the feeding experience in.

It was a genuine joy to see dad (the perfect penguin parent himself) among his favourite creatures.

Couldn't be happier.

:: Happy by Pharrell Williams

Good vibrations

Oh my word.

I have some time off work. I haven't had a week without work (not complaining) since Christmas and I am shattered.

I'm honestly massively, massively grateful to be in work - due to a) Covid and b) MS, but I am very, very tired and I need to rest.

Obviously am now panicking about relapsing but am trying very hard to THINK POSITIVE THOUGHTS and embrace calming vibrations.

So I will be staring at the happy balloons, drinking a cup of nice tea and trying to bat away any panicky sensations of doom which may be thinking of heading my way.

:: Good vibrations by the Beach Boys

Smells like teen spirit

My 11-year-old daughter is teaching herself to play Smells like teen spirit on the electric guitar.

She has therefore out-cooled anything I've ever done.*

I'm so proud.

:: Smells like Teen Spirit by Nirvana

* Or possibly will ever do.

Killing in the name

As lockdown has limited our opportunities to socialise more widely, we as a family have found out quite a lot about each other.

The vast majority of this has been extremely positive.

I have discovered (as I always suspected) that my husband is hugely respected and relied upon at work. I've stood listening to his Teams conversations is awe of his patience and knowledge.

I have confirmed that my daughter has a remarkably long fuse and is thoughtful, creative and pretty resilient.

What she has found out about me cannot be described as flattering, but does, nonetheless, amuse her hugely. And that is that "mummy likes angry music."

She's got a point. She's realised this on a couple of musical roadtrips. As we're not using our cars anywhere near as much as usual, we have taken her on a few pootles to nowhere in particular just to keep the engines ticking over.

There's usually a stack of CDs in our cars (yes, we are that hi-tech). Husband's tend to be pop, disco and generally quite calming. Mine are on the indie, punk, rock side of things.

Or, as my daughter would categorise, angry and shouty.

To be fair, she's got a point. There's quite a bit of hollering in my collection and some rather choice lyrics (although please note I have not played her this week's song).

Not sure why this is. Perhaps I have a huge reservoir of untapped rage that I only feel safe to express through someone else's musical explosions. It might all be simmering away in my subconscious.

Come to think of it, I do have recurring dreams in which I'm an assassin. These are great by the way, a particularly vivid one seeing me chase down Idi Amin with a machine gun in our local leisure centre.

Then there was the one where I was a samurai on horseback, slicing my way through an oncoming horde.
Maybe I need a touch more warm milk before bed.

But I view these car-based outbursts of musical anger as a healthy way to express my feelings, without causing actual physical damage to the nearest window/crockery/despot.

Aaaah, lockdown life, things you never knew you never knew. And maybe didn't want to ever discover.

:: Killing in the name by Rage against the machine

Into the great wide open

It was my daughter's last week at primary school this week.

It's been very emotional - not least because she's left in such peculiar times.

Covid has meant no goodbye disco, leavers show or summer fair.

It has also stopped the little rituals of writing on each others' shirts, group photos* and hugs in the playground.

She's absolutely loved her experience at primary and we've had a fair few tears.

As parents we're quite wobbly too and utterly bewildered by how quickly the time has gone and how much she has grown.

Neither of us are really ready for her to move out of the safety and familiarity of primary and into the vast unknown world of secondary.

But life is about change and movement. The chances of standing still are remote - and it's something we all need to learn how to deal with.

Logically as adults we know this, but it doesn't make it any easier (or any less tearful) when primary school comes to an end.

We've got the summer hols to enjoy now and to prepare for the next step and all the differences it will bring.

In a world that has become increasingly unrecognisable, an ability to change and adapt is going to be more important than ever.

:: Into the great wide open by Tom Petty and The Heartbreakers

*Although we did manage some class bubble shots outside the school gates. All in their Leavers 2020 hoodies. *Blubs unbecomingly*

A forest

It has to be said that I am - without doubt - one for getting bogged down in the detail.

Bit shaky on the bigger picture.  Not great at seeing the wood for the trees.

At the minute, I have a pretty big wood that I can't see in the form of making a decision about my next MS meds.

I know I need to start some new ones. Tecfidera is sadly not working - as evidenced by relapses, scans and depressing conversations with my neurologist.

I'm JC positive so that limits my options and after reading and comparing what was left I had, in February (pre-Covid hitting the UK) decided on Cladribine.

However, thanks to the virus, the chances of a hefty immune-suppressant being prescribed any time soon are pretty slim.

If I did want to pursue it (which my neurologist isn't recommending) I'd need to wait a few months - and then be at risk of shielding if we get a second Covid spike.

Humph.

So my current option is Gilenya and I have a few reservations about it - which are rapidly growing to tree-size concerns.

The problem is that I am reading as much as I can find, looking at every little potential problem and what-if. Rather than focusing on the bigger point, which is surely: that Tecfidera isn't working and here's something that might.

I don't know, maybe I should just stop reading stuff and say okay. A friend of mine with MS has done this and just accepted the meds suggested without reading the fine print.

I think that's quite brave and I almost wish I was that kind of a person. But I'm not, I surround myself with trees.

On that subject - and at least this is one set of foliage I can do something about - our back garden is just beyond overgrown.

So we're having gardeners in next week (hopefully, be kind weather) who offer one of their services as as "jungles cleared."

If only there were people I could call in to sort out my MS wood.

:: A forest by The Cure

Don't speak

Unexpectedly, I have picked up some new work while in lockdown.

This is great, obviously, but also quite scary. I'm trying to pick up new stuff via technology I've not used before with people I can't meet.

It means all those new-work questions that you can usually grab someone and ask in the kitchen, now have to be via email/Teams calls or chats.

And it's a VERY busy team so I have no way of knowing when I'm interrupting people as there are no in-person clues.

It's work similar to that I've done before, but not for a very long time and I'm both out of practice and out of confidence. Plus my memory is not what it once was.

As such, I have found myself getting quite stressed out (never a good plan for MS) and very tired.

Both of these states of affairs combined last week into a Teams meeting in which I had spectacular MS word vomit.

Words were there - but not necessarily in the right order.
Meanings were clear in my head - just not necessarily once they left my mouth.
Hands were flapping - trying desperately to form representations of what I was trying to articulate.

It wasn't a good impression. And there was absolutely no chance of styling it out in a Virginia Woolf-esque stream of consciousness.

Oh no.

Trying to take a breath and ask myself some key questions:

Could it be going worse? Well, yes.
Could it be going better? Unquestionably.
Could I do it via mime? Tempting.

:: Don't speak by No Doubt

Hanging on the telephone

Due to the ongoing gah of the coronavirus, many people have had their usual medical appointments cancelled, postponed or otherwise disrupted.

I'm no exception, which although not disastrous compared to some peoples' experiences, is a bit of a pain.

This is because:
a) my current drugs are not working and I need referring for others
and
b) my neurologist hasn't seen and assessed me for 18 months.

However, I have heard that my July appointment is (touch wood) happening and is likely to be over the phone.

This does mean that while I will be able to talk to my neurologist, it's not the same as having a physical examination - which is surely more helpful to everyone.

However, it can't be helped and it does mean I will avoid these jolly little tests:

:: Hanging on the telephone by Blondie

The times they are a changin'

One of the many, many things Coronavirus has wrought upon us is a soundbitey phrase which is being repeated ad infinitum by politicians, the press and, increasingly, the public.

The "new normal" is now being bandied around like some sort of breakthrough wisdom, spoken with a near reverence for the way we're all going to have to radically adjust and adapt.

And yes, we will, there is no doubt. But for members of the chronically ill community, the concept of new normals is anything but new. We experience them with unwelcome regularity.

If I may take my own 16 years as an example:

• new normal: loss of confidence. Struggling with cognitive function, logical thinking and the easy retrieval of names, places, words, connections and directions is horribly familiar to people with MS - as is the subsequent questioning of your own capabilities. 

• new normal: loss of opportunity. I still work, but it’s not at a high level. It's hard to see how working part-time between relapses and increasing disability will lead to any huge career responsibility. Bye-bye security, bye-bye potential, hello enforced working life rethink.

• new normal: loss of choice. Ok, to be fair, it's not completely lost, but it is constrained. And it relates to the smaller things like a trip out (what's the accessibility like, where are the toilets, the resting places, how are the queues, what's the noise level like, how about the lighting) to much larger life decisions.

• new normal: loss of vision. Three bouts of optic neuritis have left me with damaged sight. There are many, many frightening impacts of MS, for me vision issues are very near the top.

• new normal: loss of control. MS hands make for poor tools. Fortunately for my communication needs, there is voice activated text. But, as I discovered during one memorably sweary exchange, my phone asterisks out the naughty words.

My personal tally of new normals have gradually increased over the years as my MS has progressed. And with each there has to be a grieving process to allow us to adapt and survive change. 

Our society's new normals will require the same process - for some it will be manageable, for others it will be very, very tough. 

But if those of us who are chronically ill have anything to share, it is knowledge, advice and experience. Because we have become the reluctant experts in this sort of normality and for us, it's just not new.

:: The times they are a changin' by Bob Dylan

The way it is

We were meant to be in Menorca this week.

It was going to be the first time we'd taken our daughter abroad; but thanks to Covid-19, we are here and not there.

So, what to do?

a) be grateful we're well
b) accept the circumstances
c) check the weather...
d) ...and confirm the temperature here is EXACTLY THE SAME AS IT IS THERE
e) blow up the paddling pool
f) pull on the swimsuits
g) use our imaginations because
h) is for holiday

:: The way it is by Bruce Hornsby and The Range

Fall at your feet

It's all got a bit much this week and I'm therefore struggling with knock-on symptoms.
The only way to deal is with a bath, a cuppa and some lovely music.
Enjoy this week's tune from some superb songwriters.

:: Fall at your feet by Crowded House

Lazy

I am in the lucky position (especially at the moment) of being able to work from home.

I work in communications and a lot of it is as you'd expect - sitting at a keyboard typing, hunched at a makeshift desk planning or Skyping into meetings and trying to say something useful.

At the moment I'm in the middle of writing and uploading some online training for a national children's charity. I've been learning some new digital stuff from a very helpful chap at a company in Serbia.

So the work calls have been a little different - usual chit chat about work, bit of weather comparison and then a resume of whatever new Covid-19 announcements have been made in our relevant countries.

Fascinating to see how different places are dealing.

So it's all very positive and very busy - but good heavens I am exhausted. And doesn't my MS know it

Numb hands, permanent hug, terrible balance - they're not new symptoms, they're all very, very familiar. And I know they're rearing their heads to unpleasant levels simply because I'm so shattered.

Really, what I want to be doing now is just being hugely lazy for, ooooh, about a week. Yes, just a week to be utterly and completely and unashamedly slothful.

And then I'll be able to get back into it.  Promise.

:: Lazy by Suede

Green, green grass of home

Covid-19: take precautions, stay safe, avoid unnecessary journeys.

Cat: now would be the ideal time to eat a massive blade of grass, get it trapped round my palate, sneeze it up through my nose, force two non-contact vets trips and require the use of forceps.
Look at my lovely grass trophy.

:: Green, green grass of home by Tom Jones

Fire

In order to cheer myself up in the middle of this pandemic, I thought I'd do a wee bit of scrolling through Twitter to find some cat memes.

What I actually stumbled upon, due partly to the organisations and people I follow, was a discussion about something called 'smouldering MS.'

Now to me, smouldering conjures up images of heavy-lidded Hollywood goddess Lauren Bacall. It does not, for example, suggest chronic active MS lesions.

Or so I thought. But my Twitter foray lead me to an article about smouldering MS and my word it's a cheering read.

According to the piece on the MS Trust website, a team of researchers have developed a new MRI technique which makes it possible to capture a type of lesion with a dark rim, which grow slowly for many years.

These lesions can appear regardless of the type of MS or - crucially - whether people were, or had ever, taken a DMT. 

The study showed that "people who had four or more smouldering lesions were more likely to have developed cognitive and mobility problems at an earlier age, have lower brain volume and were more likely to have MS that had become progressive, when compared to people with no smouldering lesions."

Plus, "in a subset of people who had yearly MRI scans for 10 years or longer, rimless lesions shrank over time, but chronic active lesions remained the same size or expanded. Smouldering lesions showed MRI features typical of on-going tissue destruction."

The cheerful conclusion to the research indicates that smouldering lesions are common in MS, are associated with a more aggressive course of MS, cause tissue dame, and (this really is the kicker) occur even in people taking effective DMTs.

So, thanks Twitter, that's cheered me up no end. And also given me some questions for my neurologist whenever it is I can next see him.

Sigh.

:: Fire by The Crazy World of Arthur Brown

Step on

Lockdown + MS + work + homeschooling + needy cats = gaaaaaaaaaaaaaaaaah!

Think I need to remind myself I just need to take it one step at a time.

:: Step on by Happy Mondays

Let's get physical

I'm not one for exercise to be honest.

I know with MS that I really, really should. The benefits are well documented.

The MS Trust's website explains them clearly: "There have been many studies to look at the benefits of different kinds of exercise for people with MS. It can be hard to compare these studies, but they have in general shown exercise to be valuable for people with MS.

Moderate exercise has been shown to improve strength, mobility and bowel and bladder function for people with mild to moderate MS. Exercise is also helpful in helping maintain a healthy weight. This reduces your chances of acquiring co-morbidities, and can also reduce the impact of some MS symptoms, such as pain and fatigue.

Exercising is good for the mind and brain, not just the body. In general, exercise has been found to be neuroprotective, to improve symptoms of depression, improve cognitive processing speed, visuospatial memory, executive function and cognitive flexibility. These boosts can last for several days after exercising."

So, many excellent reasons there for pulling on my plimsolls and getting moving. But I just never really have - I've comforted myself that walking my daughter to school, doing the housework and having the occasional swim is enough. But I know it really isn't.

So it is with some surprise that I now find myself getting up every morning, stepping into my shorts and enjoying an online PE lesson courtesy of lockdown PE teacher Joe Wicks.

It started as a replacement sports session for my daughter while she's off school - but she gave up after a couple of weeks. I, however, haven't. Some of the exercises I can't do, and I adapt these for what my body can manage, but I'm really, really enjoying it.

Maybe all I needed was to be told what to do by an overly-enthusiastic curly-haired sports demon. Who knows? But it seems to be working - four weeks in and all but one session followed (we missed the first lesson, sorry Joe)

So thank you Joe, I hope it's doing me some good. And if (as the internet tells me) it takes 66 days to form a new habit, then we've still got a fair few weeks before exercise becomes a regular thing in my life.

But here's hoping Joe Wicks will help it become a fixture. Or, infact, a Wixture (I'll leave now.)

:: Let's get physical by Olivia Newton-John

Sovereign light cafe

It's the first week of the Easter holidays and we were due to be in Cornwall.

But due to the current situation, we are understandably not.

Instead, we are working (from home) and trying very hard to keep out daughter entertained and our spirits uplifted.

We've been thinking about how we might be able to bring a bit of Cornwall to us, and we've come up with the following ideas:

• spending time in our garden which, due to its overgrown nature and lack of care, is a little like the Lost Gardens of Heligan (before they were found)
• chalking a seaside scene on the patio
• enjoying the very welcome sunshine we are having this week
• grabbing as much family time together as possible
• attempting to make pasties - traditional and veggie
• filling the paddling pool (if the weather stays nice) to pretend it's the caravan site swimming pool

One of our favourite places to eat in Cornwall is a little spot in Looe called Daisy's Cafe which we have visited almost every year since our daughter was born.

She first paid a visit as a six-month-old, has since chomped her way through endless beans on toast lunches and coke floats.

So to recreate this experience, we've decided to pick our favourite meals from Daisy's menu and recreate them in our own cafe.

We haven't suddenly opened one. A couple of years ago we painted the tiny carport attached to our house (no where near big enough for a car) and made it into something approaching a cafe.

So here we sit, scoffing our Cornish favourites and making the best of where we currently are.
We're also hoping very much that Daisy's Cafe survives this horrible time; it's a very special place.

:: Sovereign light cafe by Keane
Nb this week's song is not based on Daisy's Cafe, but refers to a real cafe in Bexhill-on-Sea. If it's as lovely as the song then I'd definitely like to go.

Trash

My 11-year-old daughter has almost saint-like levels of patience, but even she is finding this coronavirus lockdown a bit of a chore.

In between my over-enthusiastic but patchy attempts at homeschooling, the lack of  real-life classmates and the limited exercise opportunities (apart from the marvellous PE with Joe), it's all a bit much.

So she's coping by getting the paints out and attacking all bits of nearby paper and card. It's rather lovely and is entertaining the cats, who love to sit and watch her do things they don't understand.

We've got a number of rainbows for windows, a small set of Snow White and the Seven Dwarves figures and a waiting line of old canvases she's painted over in preparation for more artistic endeavours.

One of her pictures has found it's way to our rubbish bin. Not because it is rubbish, but because she wanted to tape it to the top as a way to say thank you to the crew who collect our trash - just some of the people who are still out and about doing the jobs that help keep us going.

The list of people we need thank is extremely long - not just waste collectors, but health and social care staff, teachers, shop workers, cleaners, social workers, benefits staff, police, prison staff, carers, everyone who keeps our utilities running; the list goes on.

As we go further and further into lockdown, the more and more grateful we should be that other people are out there doing the work.

As a society, we have undoubtedly taken some of these services and people for granted. I hope that whenever all of this is over, we will stop doing that and start saying a few more thank yous. In picture form or otherwise.

:: Trash by Suede

What a wonderful world

We've all been tipped headfirst into a world we no longer understand.

It's frightening and confusing and for many of us, for many good and valid reasons, downright unfair.

My daughter, like lots of other children across the world, is of an age where she can understand why we need to be doing what we'e doing and the benefits the 'stay home, save lives' message have.

But she's also young enough to feel mighty hard done to - not least of all because she's in her last year of primary school and it's entirely possible she won't be returning.

However, she's nothing if not resourceful and has made her own version of a school timetable. So far we're finding that learning together is really quite a pleasant experience.

How long this lasts, I don't know. But the more pressing question at the moment is what exactly constitutes those 30 minutes of "weird stuff"?

:: What a wonderful world by Sam Cooke

Going underground

Coronavirus, obviously.

It's bewildering and frightening and almost unbelievable all at the same time.

We're at the very start of isolation measures and people who have never had to do this for extended periods of time are now going to have a very small insight into our lives, particularly our lives during a relapse.

So to reflect this - and to keep a bit of sanity - here's a piechart of things that may help during this time.

:: Going underground by The Jam

You & Me Song

It was my birthday at the weekend, my 15th with MS.

I don't normally tend to acknowledge my MS alongside celebrations for my advancing years, but this year I did think about it.

Things have changed since my last birthday - the result of two relapses within seven months - and the difference between my 43rd birthday and 44th were clear to me.

I went out for dinner with friends the night before my big day. This proved more of an issue than it would have previously - I needed help fastening jewellery, I couldn't wear the higher heels, I struggled with the cutlery and I was limited to only ONE celebratory gin.

Given the evening out before, there was no huge party on my big day itself. I knew I'd have to spend the day itself quietly. So I did.

The day after my birthday my husband and I booked a day off work and went on a day trip to Stratford-upon-Avon, one of our favourite places.
Stratford was as delightful as ever; the cafes, the shops, the RSC and the swans.

But it's clear that I'm struggling now to do the walking along the river like I used to, to consider booking a play without worrying I'll be unwell or even manage to be much of a conversationalist by the end of the trip. Poor hubby.

I realise that progression is inevitable in MS - just as I'm brutally aware that comparison is the thief of joy.

It's very, very difficult with a progressive disease to not think back to how things were - before diagnosis, five years ago, last birthday. But it's not useful, not healthy and certainly not helpful.

So while I'm not sure how my 45th birthday will be, I can only keep the words of the bard himself in mind: "With mirth and laughter let old wrinkles come."

:: You & Me Song by The Wannadies

Mirrorball

When I was at university I worked behind a bar during the holidays to earn some extra funds.

One stint I did was in a working men's club which had a 'male only' room - so as you may imagine it was quite full of eyebrow-raising comments and exaggerated machismo.

And while I never actually had anyone say to me that old cliched classic 'My wife doesn't understand me' there were certainly variations on the theme.

Of course the vast majority were just trying to get away with chatting up a young barmaid - and therefore it was likely to be the case that their wives understood them all too well.

But that doesn't take away from the fact that maybe everyone does want someone to understand.
And this is very often the case with MS and all it's confusing, frustrating, frightening and invisible symptoms.

It's nigh-on impossible to explain some of the symptoms we experience and even harder to describe the impact they can have on almost every aspect of our lives.

So I was really touched by this film made for Shift MS, a social network for MSers, which so accurately captures the day-to-day life of many of us with a diagnosis.

Everything in it is overwhelmingly familiar to me - the visual colour loss checking, the finger-to-thumb testing, the full-body weakness, the struggles with concentration and the "I'm fine" lie.

It's a really wonderful depiction of a really horrible disease and reflects what we deal with astonishingly well. Have a look.

:: Mirrorball by Elbow

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

Billy don't be a hero

As part of my volunteering role for our local MS group, I write the quarterly newsletter.

This involves gathering stories and information which will (hopefully) be of interest to readers and means I can chat to a large number of people about their experiences of MS.

The spring edition is currently underway and I've just spoken to a delightful lady about her pregnancy story. It was a happy one and her beaming five-month-old is featuring on the front page.

One thing she said to me during our chat was that she wished she'd asked for more help during her labour. She says she feels was trying to be a bit of a hero.

And I suspect that's how many of us with MS may feel - that we're okay, that we can manage, that we don't want to make a fuss.

And there's the scary thought that we have to keep going because we need to show that we can - whether at work, at home or in relationships.

But sometimes we really should be a bit of a hero, especially when it comes to asking for help.

I rarely, if ever, take this advice. However this current relapse, coming as it does hot on the heels of my last one, means I've not had a lot of choice.

I have battled (and it has been a battle) through work since the end of December and I'm continuing to drag my way through it now. I'm just about managing.

But then something came up for one of the organisations I work for - and I knew I would have to say something.

As a steering group for this particular project, our meetings are generally at the organisation's HQ in London. This is a three-hour meeting which actually means a 10-hour round trip for me with a number of trains, tubes and quite a lot of walking. Never mind then focusing on the meeting itself.

I just couldn't see how I was going to do it. So I plucked up my courage and said something.

And I'm so glad I did. And I'm hugely grateful to the organisation for accommodating a freelancer. The meeting has now been moved to a venue 25 minutes and one train journey away from me. I am beyond relieved.

Of course, it doesn't necessarily mean I will ace the meeting with genius insights or endless creativity, but it does increase the chance that I won't fall over or gibber on the table.

So no, we shouldn't try to be heroes. But sometimes we might need to tap into our inner wonder woman and be just heroic enough to ask for help.

:: Billy don't be a hero by Paper Lace

Wishing well

Bit weird to think of an MRI as a wishing well isn't it?

A clangy-bangy tube of claustrophobia, I understand - although my hospital has started putting small mirrors in the machine to help you see out - and sometimes, unnervingly, your own face. 

But wishing well? Perhaps not the first thing springs to mind.

Nevertheless, it's the comparison that keeps popping into my head as my next (and umpteenth) appointment with the machine is this afternoon.

Only instead of loose change, it'll be me delivered into the magnetised well to make my own wishes for oooh, a good hour or so.

And I will be wishing. Wishing that:

• that whatever is found impacts as little as possible on my family
• that the new lesions that I'm sure I have will help determine what drugs are next (while being immensely grateful those drugs are available to me)
• that all the research is getting us closer to a cure
• that everyone affected by this stupid disease has access to the support they need to live their lives as well as possible

Outside of the MRI we can put on a brave face and a happy smile. We can keep calm and carry on because there really is no other option.

But inside it, there's just us and some motionless time to think about why we've been put into that tube in the first place.

To consider how our lives might have been different if only we'd not woken one day to find we couldn't see out of one eye, or couldn't feel our feet or couldn't find the words we used to know.

How we've sacrificed some of the things we might have wanted, how we've reset and redrawn our parameters and how we may have lost friends, family, workplaces or opportunities.

I'm pretty sure MRIs have seen their fair share of confessions, of negotiations, of whispered prayers and of silent tears.

And I'm equally sure that they have seen quiet resolve, internal pep talks, gallows humour and stiff upper lips.

I know I have wished for just a bit more time, for just a few less symptoms, for the chance to make the best of what I have.

I've also asked for help to keep finding the strength to cope. 

I can't always see it but I know that strength is in there somewhere. And I really should learn to realise that I can be proud of that.
Maybe the enclosed tube with its teeny, tiny mirror is the best time to reflect on that.

So wish me well. This afternoon, I will be my listening to some very loud magnets while hoping to also hear the sound of my own pennies dropping.

:: Wishing well by Terence Trent D'Arby

Unhappy birthday

I hit 16 years with MS on Sunday.
An inauspicious occasion I'm sure you'll agree.

But to mark the passing of MS-filled 16 years I've gathered 6 things I've learned while living them.

(Strictly speaking I suppose it should be 16 things, but I'm relapsing so have cut myself some slack.)

Here goes:
- it gets harder
- you get stronger
- try not to dwell on the past
- learn to accept help
- embrace dark humour
- keep upping your eyepatch game

:: Unhappy birthday by The Smiths

History repeating

I relapsed again just before Christmas. It's been a merry festive season.

This relapse is an almost carbon copy of the one I had earlier this year. It's mainly sensory, so: MS ruddy hug, scrambled sensation from neck down, tingly hands, numb bum, tiredness. So far, so familiar.

But while my feet escaped in May, they haven't this time and instead I genuinely feel like I'm walking on broken glass.

This relapse also appears to have taken the damp clothes sensation of earlier this year and upped it to a sandpaper scraping legs sensation.

It's all completely rubbish, obvs, and makes wearing clothes hugely unpleasant. But as I need to leave the house for work/school run purposes and have no desire to affront the general public, horrible feeling clothes it is.

As a slight plus though - my legs might feel they are being attacked by sandpaper, but they also can't feel the cold. A bonus for those non-work days when I am wearing shorts in the winter. Have learned to ignore the stares.

However, this two relapses in six months tally does only mean one thing - and that is a review of my current meds. As my neurologist depressingly puts it 'the DMT is not holding things at bay'.

So it's a case of gearing myself up to face the new meds choice. I am both immensely grateful that I have some options and hugely bewildered by what those options are.

I never feel qualified to decide what is the best thing to do. I really, really need some help, support, guidance and a me from the future telling me the most effective option.

As a minor aside, I also need to stop eating all the leftover Christmas chocolates.

Things I hate about MS relapses. A grumpy pie chart:

:: History repeating by Propellerheads feat: Miss Shirley Bassey