Helter Skelter

Today has been the first day I have genuinely stopped and taken some time out since my last post.

This is mainly because the current pace and volume of work has been completely relentless.

What started as a three-day a week role has gradually inched and inched until last week it became six days, averaging 10 hours a day.

A lot of the time I hear my MS Nurse's voice in my head chiding me for over-doing things.

I also hear my manager telling me to stop putting other people first.

But how to do this when there's so much to get on top of?

And how to get it all done when everything takes so much bloody longer because you have to fight your own body every day.

At the moment, it feels like my working life is being spent in a genuine helter skelter of haste, confusion and disorder. 

And while I have so far managed to cling on while hurling at top speed, I'm not sure how much longer I can stay on the ride.

:: Helter Skelter by The Beatles

Movin on up

Woohoo, latest bloods: lymphocytes have shifted from a paltry 0.37 to a very marginally less paltry 0.39.

No where near the normal and healthy range, but it's the small things you've got to celebrate with MS.

:: Movin on up by Primal Scream

Do I wanna know?

A lot of MS is about what happens in your head.

For literal reasons - it's a disease that wreaks havoc on the brain.

And for more metaphorical ones - it's a disease that wreaks havoc on your mindset.

When the rot first set in, all those 18+ years ago, one of the first questions I had was what was going to happen to me?

Would I lose my eyesight? Would I need a wheelchair? Would I be able to have children? How bad would it get?

All understandable reactions to being told you have a progressive, incurable disease when you're in your mid-twenties. 

As time as progressed, the questions become less frequent and have shifted in focus, but are nevertheless, still there.

And occasionally, among the mayhem of everyday work and family life, I do stop to wonder again.

Wonder how much time I have left for reasonable health, how much working ability remains and how much we should do something now and not gamble on a later which may be fraught with far more difficulties.

These are sensible things to consider and it's possible that I really should take a step back and plan a bit more, rather than just being aware of them as vague concerns.

But to do so would risk upsetting the mental status quo I have (relatively) successfully achieved for quite a long time now.

If the choice was given to me to know just how and when things will get worse - would I want to know?

I'll be honest - the answer varies. 

There's something to be said for living in the moment and not spending too much time picking at scabs. It's quite freeing and probably better for my well-being.

But I am, at heart, a planner and certainly resonate with the sentiment of forewarned is forearmed. Even taking into account the self-knowledge of an extreme worrier.

So, on balance, yes, probably, I would want to know. But I very much see why others wouldn't.

However, until such time as medical crystal balls appear, we're all in the dark.

Looking for the occasional lightbulb moment and feeling our way through the best we can.

:: Do I wanna know? by Arctic Monkeys

Delicate

We're in Cornwall - on a holiday originally booked and paid for in 2019.

Postponed twice, for obvious worldwide germ-fuelled reasons, but now finally here.

And it's lovely.

This trip has come with extra appreciation this year of how easily things can change. 

How fine the balance is between a yes and a no, between a can and a can't, between one day and another.

The pandemic has had such an impact on all our lives, that to be teetering out the other side seems almost surreal.

But in the place we've returned to, there are obvious differences and evidence of the toll the past two years have taken.

Some empty shops, a few higher prices, a lot more stories and the poster reminders of masks and high rates.

One place that appears to have weathered the storm is our favourite holiday activity shop where we've been painting pots.

It's lovely to sit as a family and daub paint, in varying degrees of success, on a variety of ceramics.

There are rows of plates, mugs and bowls to choose from, along with piggy banks, fairies and dragons.

So we pick our preferred items, either by usefulness or silliness or potential beauty, pick up our paintbrushes and concentrate.

We sit in the stillness and appreciate the moment for what it is. That in this moment we are content and things seem okay and we should really, really be grateful for that.

Because if the last two years have taught us anything, it's that little can be taken for granted.

And we're all at risk of a bull in a china shop.

:: Delicate by Sananda Maitreya ft Des'ree

The boy in the bubble

Jeepers.

Just had my bloods back after my second week, second year of Cladribine.

Appears the toxic tablets are doing what they're meant to do - and possibly doing it too effectively.

My lymphocyte count is on the floor and I'm awaiting advice on the best way to stay as healthy as possible.

It's that spot between a rock and a hard place - when the drugs that are meant to help are in themselves something of a threat.

Plus things are a little different this time round. In autumn/winter 2020 when I completed my first year and had a drop, we were at varying stages of Covid lockdown.

No one was venturing out for long (unless required by circumstances), schools were closing again and masks were everywhere.

This time, all bets (and masks) are off and I'm nervy. Not just for Covid-related reasons, but for all the other nasties in circulation.

Low lymphs mean I will be very prone to infections - with potential threats being both external and internal.

I've already had three bouts of shingles, I have a daughter in a classroom of rising coronavirus cases (had it once, but could get it again) and we don't live in a sterile environment.

Bar wrapping myself in a bubble of cling film and avoiding everyone and everything, I'm not sure of the best way forward.

And this is the situation for many, many people who are at way more risk.

We're watching life go by from inside our bubbles and marvelling at the thought of being able to take good health for granted.

At not having to weigh up the pros and cons of seeing family and friends, the constant checking of cleaning and food preparation, the guilty negotiations with work colleagues and the endless ruddy admin of medical monitoring.

But dwelling on these thoughts for too long becomes stressful and distressing - and that's certainly not going to send my lymphocytes back in the right direction.

So I'm simply going to have to await advice from my MS team and try to enjoy my leisure time in the most enclosed way I can.

:: The boy in the bubble by Paul Simon

Good fortune

I'm suspicious.

And also superstitious.

Things have been quiet health-wise for a bit.

Well, I say quiet, there's been Covid and three bouts of shingles and general pain and exhaustion.

But there hasn't been massive MS hits.

Why? Why is this? Is it Cladribine, is it a naturally quiet period, is it that I'm ending distinct relapses and just slowly tipping into secondary progression?

It's unnerving.

You'd think it would be a good thing, wouldn't you? An appreciate the moment and be grateful thing.

And I am trying - trying really hard to appreciate and I am desperately grateful. But I can't shake the suspicion.

And I can't shake the superstition that writing about being reasonably ok will cause a massive backlash.

Not logical, not healthy and not really a sustainable way of looking at things.

I'm sure there's a psychological term for this and it's bound to be tied up with anxiety on some level, because many things are.

The only thing to help, it would seem, is remembering that I'm having my bloods taken next week to see just how much damage Cladribine has done to my immune system.

Fully anticipating negative news.

And oddly, that feels so reassuringly familiar it's almost positive.

:: Good fortune by PJ Harvey

Poison

For the first time in my MS drug taking history, I feel like I'm actually putting something extremely potent into my body.

I realise the box with the huge yellow 'cytotoxic' sticker should have been a bit of a clue, but somehow it doesn't seem to have properly registered until now.

Maybe it's because I've just completed my second treatment week of my second treatment year. And, in theory, that should be it. 

Maybe it's because I need to dig out my irradiated blood details because we're going away for a couple of nights and I need the card just in case.

Maybe it's because things look to be heading back to 'normal' and I can't hide my immune-supressed self in the house for work much longer.

Or maybe it's because I've actually felt quite rough taking the drugs this time round.

The thing with all MS treatments is that it's such a gamble anyway. There's a possibility they'll work, there's an equal chance they won't.

But all the time, we are putting chemicals into our bodies that, if we weren't unlikely enough to have this disease, we wouldn't dream of doing.

Sometimes I can see why people choose not to.

But what if these ones work, you think. What if they do better than the last ones, or the ones before that?

What if I win this time?

It's the thought pattern of a gambler.

And, quite often, that is what taking the treatments is like. A gigantic roll of the dice with your own body.

This time I chose to land on Cladribine.

Next time, who knows. 

But then maybe, just maybe, I won't need to roll again because Cladribine will do it's job. It's pretty important job of killing off those pesky T and B cells before they make their way to my brain and spinal cord.

And if it works, and good heavens, I really hope it does, then Cladribine, not gin, will become my poison of choice.

:: Poison by Alice Cooper

Toxic

Covid finally caught up with the Scrambled household recently.

While we've avoided it for almost two years, it has been seeming inevitable for a while - daughter's class has been affected by Delta (pre-Christmas) and Omicron (post) so the chances of avoiding it have been slim to non-existant.

And when the double line showed up on her test a couple of Sundays ago, it was only a matter of time before we all had matching LFTs.

And so it was. Fortunately, it was mild. Daughter bounced back within a couple of days. Husband and I had what felt like an extremely heavy cold.

My taste and smell went, but seems to be heading back, but my word the tiredness. So a few days off work then a week of dragging myself back through it and here we are.

Being CEV (blimey, the new language we have) I was able to access an infusion of the new antivirals. So into hospital it was for a couple of hours to receive them.

But not before frantic calls to my MS team to check I could actually have them - because, almost unbelievably, I'm in the middle of Cladribine treatment.

Yes - after waiting 16 months for my lymphocytes to struggle back to clearance level and finally getting the drugs - I was taking my last tablet of week one on the day Covid was confirmed in the house.

The timing is soap opera-worthy. As is the fact I took day one of the course EXACTLY 18 years to the day that I was taken into hospital for my first relapse.

But my MS nurse cleared things (in, I have to say, the quickest ever call back I've had) it so onto the infusion I went. Hard to know if it helped, but better to have than not.

So now it's just a case of making sure LFTs remain negative before I start my second week of the drugs that come with cheerfully yellow warning stickers.

Will they work? 

Unknown, but hoping.

:: Toxic by Britney Spears

Girl, you'll be a woman soon

Eighteen years with MS, eight things I've learned:

* Seek advice, but

* trust yourself.

* Learn what you can, but

* don't become your illness.

* Fight if needed, but

* it's ok to back down.

* The options get fewer, but

* the choice remains yours.

:: Girl, you'll be a woman soon by Urge Overkill

Get lucky

Brand new year, same old tests.

Yet another blood test tomorrow to see if my lymphocytes have managed to struggle their way any closer to the magic 0.8 which means Cladribine clearance.

Reasons this is unlikely: they haven't managed it in more than a year, I have effing shingles, I remain utterly knackered, it's cold and, judging by previous readings, they seem to have liked the warm better.

Reasons it may happen: had some time off work over Christmas and essentially slept for a large chunk of it, MS nurse suggested I take multivitamins, time is passing and they're meant to rise as the months go by.

I'm honestly not hopeful. And I am beginning to resign myself to the likelihood of not being able to take my next course - and instead embarking on the deeply stressful process of choosing something else.

That is, if I can take something else after the battering my immune system has taken over the past year or so.

GAH!! As if the MS wasn't bad enough, it's all the other logistical and emotional shit that accompanies it which makes it so utterly exhausting and relentless.

As I read the other day, having a chronic illness is like being handed a full-time job you never applied for and can't quit.

An occasional day off would be nice though. Or a pay rise.

Or a helpful blood test.

:: Get lucky by Daft Punk, ft Pharrell Williams and Nile Rogers

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

Counting sheep

Bloody hell, MS.

What, what, what is the point in enforcing fatigue if you also insist on insomnia.

Grumbles to self. At 2am. And 3am. And, obviously, 4.

:: Counting sheep by Airhead

Love rollercoaster

Oh good grief, it appears that I am living in a medical Groundhog Day.

Lymphocytes won't shift in the right direction, so more blood tests booked, more stress, thereby exacerbating MS symptoms and more hanging on the ruddy phone.

And to top it all off, I have Fucking Shingles* for the second time this year.

Presumably a gift from the Cladribine fairy. Despite the fact I can't actually take the Cladribine because my lymphocytes are stubbornly refusing to rise.

It's all so unutterably tedious and, also, faintly unbelievable when it comes to describing the interactions between MS on its own, MS drugs, Covid  booster jab and flu vaccination.

1) I have MS and all the shit that entails.

2) To try and prevent the shit, I have to take the Cladribine.

3) The Cladribine smashes my immune system, leaving me open to varying nasties.

4) Examples of which are Fucking Shingles* and also Covid and flu. 

5) We have vaccines against these last two. But to get any use from these vaccines, my lymphocytes have to be at a decent level.

6) Which they aren't because I have to take Cladribine.

7) Which is meant to help my MS and all the shit that entails.

They're so reliant on each other that to an outsider it just sounds like utter gobbledegook.

To be honest, I'm beginning to despair ever getting out of the low-lympocyte-loop.

It's like being on the world's crappiest funfair ride and I feel very tempted to bang on the payment booth and demand a refund.

:: Love rollercoaster by Red Hot Chili Peppers

* Medical term

Supermassive black hole

It's MRI time on Friday.

Or at least I hope it is, last time I wrote about an upcoming appointment it got cancelled, so I may do better to be quieter.

Anyway, it's due at least.

As medical investigations go, I don't mind an MRI. It's not painful and if I'm lucky I'll get to listen to my choice of songs.

I have an MRI CD which, thanks to repeated forays into the tube, has enabled me to choose a song list of tunes that can compete with the metallic bangs and crunches.

Some even complement it. Or so I like to think while I'm lying there, supine and VERY VERY, still.

(Just thought, will I have to wear a mask this time? That'll be a new one to accommodate under the face cage. Better check my letter.)

Sometimes I'm quite optimistic going into an MRI. This time I am not. I have clearly deteriorated over the past two years and I feel quite knocked by a suspected sensory relapse from a couple of weeks ago.

So I'm:

1/ anticipating new lesions

2/ wondering what this will mean for my next round of Cladribine (which I currently can't take anyway as my lymphocytes are rudely refusing to elevate); and 

3/ contemplating the horror of the scan showing black hole(s), which in MS signify irreversible damage.

Although I like to try and be chirpy about these things, I also need to be realistic.

To be honest, I think the best I can hope for from the experience this time round is a bit of a lie down.

:: Supermassive black hole by Muse

You spin me round (like a record)

Anyone gripped by the cliffhanger of my last post (neuro appt shenanigans) will be thrilled to know it had a positive outcome.

Well, positive-ish.

The face-to-face meeting got rescheduled and I saw my neuro for 30 minutes last week.

Thirty minutes in two-and-a-half years. Worth the wait.

After the usual comedy tests (noticeably worse results than last time) I discussed my permanent MS Hug which is now driving me insane.

So I got prescribed some new drugs to try and manage the pain of the hug. Hospital pharmacy didn't have them in stock, so an order was placed.

All good. Except I then developed the worst flare of the hug I've had in some time. Really painful, really exhausting, so much so that I can't sit upright and have had to bow out of work for the past seven days.

This situation is shit - suspect new lesion (lesions?) which may indicate Cladribine isn't working, it's incredibly painful and I'm having to deal with the self-employment panic of a) no pay and b) will they see this as the thin end of the wedge and just decide to get rid.

And the drugs prescribed? Did a bit of Googling at home so I knew how they'd work. During the course of which, I discovered they affect white blood cells.

Confirmed this with MS nurse so I can't bloody take them.

And this, despite the fact neuro and I had had a pretty lengthy discussion about battered lymphocytes and the importance of upping them to enable me to take Cladribine again. Currently they're not recovered enough to allow me to take the second year course.

All in all, not an overly positive experience. But! I have got an appointment through for an MRI. Which has also necessitated planning around my next raft of screening tests involving endless phone calls and near-begging to get a blood appt.

Good job I was forced into taking time off work to be able to deal with all the above, while strapping hot water bottles to my torso and back and lying on the floor.

Sometimes MS feels completely like spinning plates with one hand tied behind your back. In the dark.

:: You spin me round (like a record) by Dead or Alive

Doctor! Doctor!

It's been a while, and there's a reason - the utter mayhem of work which has led to a recent run of doing 13 out of 14 days.

This has, somewhat inevitably, led to neuropathic pain, spasms and crushing fatigue.

I have had to finish work halfway through today because I just can't do any more.

Ugh.

As it happens, I'm due to see my neurologist tomorrow. It'll be the first face-to-face appointment in more than two years.

I have, as usual, a host of questions. Not least about whether I need to be considering the words 'secondary' and 'progressive.'

But time isn't kind in MS and it might be that I don't want to hear the answers anyway.

*Update: appointment was cancelled, via text, night before I was due to go. Clearly the memo was missed on avoiding stress with MS. Back on the waiting list.*

:: Doctor! Doctor! by the Thompson Twins

Blowin' in the wind

I'm back in hospital tomorrow, having my next round of tests to see I can take my second course of Cladribine.

Almost unbelievable that a year has passed since that first appointment.

But time does indeed fly.

My lymphocytes need to have recovered enough to allow me to do this, to at least 0.8, I think, but I will get the details tomorrow as prescribing parameters may have changed over the past 12 months.

My last bloods in June put me at 0.73, so, assuming the 0.8 is still correct, we shall see if my poor body has managed to do what it needs to do to get over the line.

But even then, it's only the first hurdle in the wonderful world of MS drugs.

Can I take them is not the question. Really, the question is will they work?

And the answer to that is currently wafting on the breeze.

:: Blowin' in the wind by Bob Dylan

Army of me

Do you sometimes look back on a period of time and wonder how you had the hours in the day and the energy to get through all the things in it?

If so, you'll understand the slightly shell shocked feeling of having got to the other side.

Even more so if you have a body that insists on fighting you every step of the way.

It's been two weeks of non-stop work, requiring long hours, lengthy meetings, last-minute requests and constant demands.

And in the middle of it all, my friend's funeral. Which was a very touching event.

It has, in short, been exhausting. And one of those times my husband thinks I have an army of myself stashed away to be able to command to deal with all the tasks.

I don't. But I'm pretty sure we all wish we did on occasion - foot soldiers to pick up the slack and captains to make the decisions.

However, all the work got done (some of it in an eye patch due to insane temperatures flaring my existing eye damage) and I'm now on leave for two weeks.

Company, stand at ease.

:: Army of me by Bjork

Footnote for this week's artist - I once won a nightclub competition at university for looking like Bjork. Anyone reading who may know me in real life can judge whether that was a fair assessment, or if the dark of the club and the drunkenness of the crowd may have played into the decision. Either way, I won a pretty dreadful bottle of fizz and then spent quite a few months of being referred to as Bjork around campus. There are far worse comparisons to be had.

Sailing on the seven seas

Well, what a lovely week of weather.

Sadly, we've spent it inside working, but last night we were let loose and went out!

But not just anywhere - we went out to a FLOATING GIN PALACE!!

(Alright, our friends had hired a canal boat and were adventuring along the waterways near to where we live, but they had said booze on board, therefore the description stands.)

And it was lovely - not only to see friends in actual person - but also to be out in the glorious weather taking things very easy at a top speed of less-than-walking-pace.

And because we drove around an hour to meet them, because the weather was beautiful and because we were on the water, it felt almost like a mini holiday.

And now it's the weekend and the sun is still blazing so the paddling pool will be out.

Yes, we have bits of work to do, and yes, there's always a huge list of house jobs, but the floating gin palace vibe has set me up for the weekend and I intend to try and channel that spirit (pun intended) for the next couple of days.

:: Sailing on the seven seas by OMD

Titanium

It's Disability Pride Month this month.

I'll be honest, I wasn't aware disabled people had a month in which to be proud, and I've been one for 17 years.

Either this shows a staggering lack of awareness on my part, or a larger one in society.

I'll leave that thought hanging.

But I also discovered we disabled people have our own pride flag, and I rather like it.

It's a little bit superhero, it's a little bit 80s retro, it's very slightly Bridget Riley. And all those are good things.

The meaning behind the design, by Ann Magill, is broken down into these parts:

Black background - a colour of mourning, to represent those who have suffered from Abelist violence, also a colour of rebellion and protest.

Zigzag/lightening bolt - how disabled people must navigate barriers and the creativity in doing so.

The five colours - the variety of needs and disabilities (mental, intellectual & developmental, invisible & undiagnosed, physical and sensory.)

The parallel stripes - solidarity and difference within the disability community.

So, now I know. And I shall fly the flag (metaphorically, I suspect, not literally.)

And I shall also take a moment to recognise that we should have a month of our own. A month to recognise and celebrate what we live with - every single day.

Because disability is with us for life. And that is nothing to be ashamed of. 

The ways in which we continue to live our lives - despite the hell our bodies throw at us and the varying and vastly misunderstood restrictions we face - is absolutely something to be proud of. 

:: Titanium by David Guetta ft Sia