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

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

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

That's what we can do

I haven't mentioned my work for a little while. I think it's because I've been too taken up with my recent/lingering relapse and all its varying sensory delights.

But as I am (hopefully) coming out the other end of this one - hug has gone, sensation is almost back to what passes for normal for me, I just need my hands to start fully cooperating again - it's time for a work update.

I am currently self-employed and am working on two different projects for two different organisations. They are both very interesting.

It's not been easy carrying on working during the relapse. If I were an employee I would most likely have taken some sick leave, but I work for myself so if I don't work I don't get paid.*

Not ideal for someone with a chronic illness obviously and something I'm going to have to really consider as and when these projects come to an end.

But today I am working. I am travelling down to London for a few days for one organisation, having been at my other one on Monday. The juggling aspect of this appeals to my brain and makes me feel like I'm doing my bit to keep it active and engaged.

But the effort is taken to keep on going during this relapse has been incredible and looking back now, I'm not quite sure how I've managed it.

I think it's because I'm a) ludicrously proud, b) ridiculously stubborn and c) it's my choice - something which is really, really important when living with a disease which can strip you of them.

Work is important to me and I'm lucky that I'm currently in a position with my health where I can still choose to do it. I am aware that this may not always be the case.

I know a number of people with MS who are not currently working and who warn me that I shouldn't I tie my self-esteem up with my job.

They are absolutely right, of course and there have been times over the past few weeks where I have really struggled with what I've chosen to do.

But I've gritted my teeth and - against all reason and good sense - carried on. Because it's my choice and I'm just not ready to choose to stop quite yet.

:: That's what we can do by Deacon Blue

*I could apply for Employment Support Allowance, but the thought of the forms just makes me want to cry.

Everything about you

So I appear to have reached that point in the relapse where I find the only sensible option is to take some time out to have a little bit of a grump.

This current state of sad face is caused by:

Seven weeks of not being able to breathe comfortably thanks to the hug. 

Seven weeks of relying on other people to do the driving.

Six weeks of being off balance.

Six weeks of pretending I'm ok to do the new work that I've started.

Four weeks of not being able to write, type, text or - and most importantly - apply eyeliner in any sort of an acceptable fashion.

Four weeks of feeling like I'm wearing damp clothing.

Four weeks of dragging myself through the day.

A few rare occasions of actually asking for help.

And (at some point of) every single day wondering if this will be the relapse that I never recover from.

So I'm allowing myself a small moment of pity and a few toys to be thrown out of the pram.

But I know this emotional downturn won't last for long. Speaking from far too much MS experience, I know it never usually does.

And I also know that whatever damage I am left with I will learn to live with.

So despite this week's choice of song, which is an excellent toy throwing anthem, I know that I don't have it in me either rationally or energywise to waste too much precious emotion on MS.

:: Everything about you by Ugly Kid Joe

Red right hand

Ruddy relapse continueth and for the past couple of weeks my hands have been quite badly affected.

This has happened before and I am hoping against hope that the pathways aren't too damaged to repair to a decent degree.

My hands are both somehow numb AND - when they brush against something (anything) - feel like they are covered in sand.

They are massively uncomfortable - but even more depressing is that the dexterity has gone and they no longer feel under my full control.

I struggle to write, type (thank goodness for autocorrect), cut things, undo things, grab things and hold onto things.

And I don't like it. I don't like it one bit.

Stuff that's hard to do with MS hands:

• type without fcuk-ups
• apply eyeliner successfully
• deal with laces, zips, buttons, hooks
• negotiate tampons without causing a Kill Bill-style bloodbath
• stroke my daughter's hair while she sleeps

Find exercises to help arms and hands from the MS Trust.


:: Red right hand by Nick Cave and the Bad Seeds

Warm wet circles

Ick. Ick. Icky. Ick.

So, the sensory relapse continues and in an exciting change (deterioration) from last week has decided to throw a new sensation into the mix.

Honestly, MS, too kind.

Anyway, this is a new - and unwelcome - one on me - I now feel as if I'm wearing damp clothes. ALL THE TIME.

Good Lord, it's unpleasant.

I know I'm not actually wearing damp clothes, despite the End of Days style deluges we've been getting.

I know this because my daughter keeps checking for me. What with that and the prodding duty she's on to see what feeling has returned (none, thus far) and the hugging to try and over-rule the MS hug (sometimes works), it's been a particularly weird mother-daughter bonding relapse.

What amazes me is the amount of peculiar sensations that our bodies can produce. Who knew we were capable of burning or buzzing or sensing the soggy?

Presumably we could all experience these oddities - it just takes a breezeblock to the central nervous system to release them.

I'm all for expanding my emotional horizons, but there are some feelings that I can live without.

:: Warm wet circles by Marillion

A little time

Well-meaning friend: Feeling any better?

Me: Thanks for asking but no, no I'm not. And it'll be a while before I am.

Well-meaning friend: Oh right, another week or so?

Me: Erm, unfortunately no, it'll be more like another few months.

Well-meaning friend: Oh right. It's just that it's been about a month already. You must feel slightly better.

Me: No. Sorry. (Why am I apologising?)

Well-meaning friend: So you still can't feel your fingers?

Me: No.

Well-meaning friend: Stomach?

Me: No.

Well-meaning friend: Legs?

Me: No.

Well-meaning friend: Oh. Wow. That's pretty unbelievable.

Me: No.

Well-meaning friend: But you don't look any different. I thought I might be able to see something.

Me: Nope. Just me.

Well-meaning friend: Wow. What can I do?

Me: Nothing really, but thanks very much for asking.

Well-meaning friend: Okay, if you're sure. Let me know though.

Me: I will, thanks very much.

Well-meaning friend: No probs. I'll text you in a couple of days, see if you're feeling any better.

Me:

:: A little time by The Beautiful South

The first cut is the deepest

It's Hallowe'en - what better way to celebrate the night of heebie-jeebies than by dwelling on my own unnerving condition?

I've spent some time today wondering at which point over the past near-15 years I have felt most scared by my MS.

• That very first hospital admission?
• Hearing the diagnosis?
• Telling my partner he could leave if he wanted to?*
• During the decisions we made about having children?
• Leaving work and feeling useless? Restarting and struggling again?
• Struggling with poor balance, pain and gradual cognitive destruction?
• Realising that my eyesight really wasn't going to improve?
• Wondering if this moment is as well as I'm ever going to be again?

I honestly don't know. And the sad likelihood is, unless some sort of miracle cure is discovered, the most frightening is probably yet to come.

Of course, I'm fully aware this is no way to live a life - trembling in the face of what-ifs - but sometimes these thoughts are completely unavoidable.

And maybe they deserve some consideration.

Being diagnosed with an incurable, progressive disease is frightening. There's no getting away from that.

Once we're diagnosed we realise that, to a greater or lesser extent, fear is a part of our lives now. Fear of the unknown, fear of the known, fear of the damage, fear of medication, fear of progression and fear for our future.

I think we need the chance to acknowledge this dread now and again; to talk about our what scares us and rail tearfully/angrily/gin-sodden against the unfairness and randomness of a disease that was absolutely not our fault.

Sometimes we need these times of overwhelming dark to be able to fully appreciate our light: to see how remarkably we're coping, how strong we became when it was our only option and how very proud we should be of the fact that we get up every single day and carry on.

Perhaps if MS could see what it was up against, it might play a few less tricks. 

:: The first cut is the deepest by Cat Stevens

* He didn't. We got married.

Timebomb

I don't think I'm having a relapse.

It's hard to know for sure because they have, to date, been impressively dramatic affairs. Full of ambulance trips! Intense pain! Or rapid deterioration!

Nothing like a turbo charged MS relapse to add a bit of spice to an otherwise perfectly pleasant day.

But at the moment, I'm just incredibly tired and my eyes feel a bit 'off.'

There's been no obvious optic neuritis pain, no stark loss of either colour or normal vision that I've experienced previously. But given that both eyes have already been damaged, it's hard to know whether this 'off-ness' is new or just exaggerated by exhaustion.

I've been sleeping from 8pm and struggling through anything even slightly taxing in the day. I've been in floods of  tears over a work email - it wasn't even a complicated one, I just couldn't get my brain in gear and in the end decide the only viable option was theatrical weeping.

It's all horribly unnerving. I hate many aspects of MS but the one that causes me the most concern is eyesight. I try not to dwell too much on this because it's not sensible to do so, but for me it's a real fear.

So I am really, really hoping that the tiredness I'm experiencing combined with the oddly gloomy-then-brighter light at this time of year is the cause and it will pass.

I've lived with this disease long enough to know that tiredness and general under-the-weatherness can resurrect old symptoms*, but that doesn't mean I'm completely rational about it.

I suspect it's because a lot of the time we can trundle along, accepting and absorbing the symptoms and subsequent damage into our lives until the different becomes the normal.

But it just takes one patch of uncertainty to remind us that our bodies and brains are the unwilling hosts to a merciless ticking timebomb.

:: Timebomb by Chumbawumba

*The MS Trust talks about the relapse-or-not-relapse in their Managing Relapses guide.

Somewhere only we know

I've been wondering how to approach this.

This subject our Victorian ancestors might, hilariously, have called horizontal refreshment but one which I like to think needs a bit more maturity and nuance. (Although obviously I am going to use that historical euphemism from now on.)

Yes, it's sex.
But not just sex - sex and disability.
It is, to put it mildly, a complicated mixture:

• the emotions: Am I still attractive? Will anyone still want to sleep with me? What if I do/don't want to do it but my partner does/doesn't?
• the practicalities: Can I still do it? How do I still do it? And even if we're agreed on the cans and hows, what if I am seriously too tired to do it?
• not to mention the stuff you don't initially think about: What if my hands give up halfway through? What if my brain refuses to think sexy thoughts? Not to mention, erm, swallowing difficulties.

Challenging, isn't it? But common. A quick Google indicates that around 50 to 80 per cent of women with MS will experience some degree of sexual symptoms during the course of the disease, along with up to 90 per cent of men.

And bearing in mind MS generally divebombs into peoples' lives in their 20s and 30s – potentially prime sexy time* - and could last for the rest of our lives, what can be done to help?

There's no easy answer, but there are a few handy tips: scheduling sex for when you're least tired (not hugely sexy, admittedly, but practical), trying different positions to avoid physical impacts (take THAT annoying spasms), sex toys (can help with decreased sensation), medication (viagra and synthetic hormones) and being prepared to keep talking and keep trying. The MS Society has some useful thoughts and suggestions.

From a personal point of view, the relapse I experienced after having my daughter successfully knocked out all – and I mean ALL – of the sensation from my waist down. Pretty rubbish.

Initially, however, my main focus was on somehow recovering while also caring for a three-month old who needed a mummy. Any other concerns were taking a bit of a back seat.

But as time went on and sensation didn't seem to be making much of an effort to reappear, hubby and I realised we needed a few frank conversations. And, I think, this is where sex talk (in the medical sense) was really important.

Being able to speak honestly, and with some humour, about what had happened to my body and how it affected us both was really helpful. If there's two of you in bed, then logically there are two sets of feelings to be taken into account. (If there's more than two, the same applies, but you might just need to organise a conference call.)

Talking is always good, it helps rebuild and reconnect after damage. Talking through your feelings about sex – the worries, the fears, the changing perspective - is not necessarily easy, but my view has always been that if you're willing to share your body with someone for extended periods of time, you should also be willing to share your mind.

In my case, while some parts of me took a substantial amount of time to recover, fortunately others didn't take quite as long.

And while the physical mending was a huge relief, it was actually the emotional communication that really helped us through that particularly intimate relapse.

How refreshing.

:: Somewhere only we know by Keane

*Although I'm sure a few older readers will disagree – and I hope they do, it means I will have something to look forward to.

Being boring

A lovely friend of mine is currently struggling with the achingly dull and deeply unnerving process of recovery.

She had her first relapse around this time last year and still feels she is dragging her way through the improvement swamp.

After the initial drama of the damage being done, the hospital admission, the steroids and the crisis management, it’s actually the recovery that proves itself to be the more testing journey.

A journey that manages to be both tedious and terrifying.

There might be noticeable leaps during the process, there might be tiny incremental steps, but at some point in every recovery comes the point at which you begin to wonder if this is it. Is this as much as I’m going to get back?

Sometimes it isn’t and your body will surprise you with a further glorious bust of repair.

But sometimes it is and that is when you have no choice but to start the process of mourning and gradual acceptance.

Every time it happens, it is like a mini death and every time it happens, you have to go through a grieving process.

And it all take SO LONG. My longest recovery (or, more accurately, where I improved enough, but not enough to be as I was before) took a year and a half.

A year and a half of hoping and waiting and watching and bargaining and being careful and declining invitations and being so bloody sensible.

With the end result of, well, what? Damaged vision, painful skin, impaired balance, cognitive mash.

As I said to my friend, the whole process reminds me of a line from the wonderful poet Philip Larkin.

In his poem Dockery and Son* he describes life as “first boredom, then fear” and it’s a line I think that could be stolen to describe the recovery process.

It takes a lot of patience and strength to wade through a recovery. It takes a lot to lie endlessly and uselessly in bed and wait, a lot to live in our own unhelpful thoughts and a lot to drag ourselves up and carry on. Living with the dreadful knowledge that sooner or later this will all happen again.

So we should remember to be proud of ourselves – even in the darkest times.

To be proud of how we make our own way through the boredom and the fear.

:: Being boring by Pet Shop Boys

*Read the full poem here. It’s wonderful.

I first fell in love with Larkin's lyrical discontent as an A-level student, but the full aching sense of loss, disappointment and regret in this poem was lost on an 18-year-old. It’s only on re-reading as an adult that it’s made me cry.

The boxer

I’m celebrating Valentine's Day with a faintly embarrassing outpouring of affection, and here it is: I love my body.

There, I’ve said it. I do.

Don’t misunderstand me: I don’t stand in front of the mirror every morning and evening talking outloud to it and affirming its loveliness, I am British for goodness sake.

I’m also not saying it’s picture perfect even in the kindest of subdued lighting. But on the whole, I think it’s great.

And the reason I think it’s great, the reason I don’t hate it despite all the limitations it has or has the potential to have, is this: my body is not letting me down. A disease is letting me down.

In my mind, they are two very, very different things.

I see my body as an increasingly knackered team member that is still managing to turn out for my side.

In the words of those irritating Prescott botherers Chumbawumba, it’s got knocked down, but it gets up again.

Because even if, as the widely held theory suggests, MS is an auto-immune disease and my body is attacking itself, then I still prefer to think it’s simply a bit bewildered rather than just plain mean.

It can’t help the random spasms, it can’t help the skewed temperature sensations, it can’t help the stabbing face pain and it can’t help the thoughts-in-a-spin-cycle.

It is not my body’s fault.

And while it fails and falters, it also tries its very, very hardest to help.

So far, it’s managed to heal claw its way back from a number of pretty hefty relapses. Alright, it may never have been a 100 per cent recovery and alright, it might hold part of the damage back and unleash it again when I’m too tired/too cold/have a virus/sat in a hot bath for too long.

But generally, it’s on my side and it’s fighting very hard to stay there.

However, I am fully aware that this state of affairs is subject to change and at some point, my body is likely to stop healing quite as well as it has done to date.

There’s only a certain amount of times myelin can repair to an acceptable level before the damage really starts to hit and more significant and permanent disability develops. 

So far I have been lucky, I have repaired to a reasonable degree. Even if each relapse has left a lingering mucky footprint on my balance, pain, sensation, cognition or vision.

I don't know how much longer this ability to mostly repair will last. And honestly, it's best not to dwell.

So while it’s sometimes been on the losing side in the skirmishes, while it can’t always make me completely better, I would officially like to thank my body for repeatedly lacing up its gloves and stepping into the ring.

:: The boxer by Simon and Garfunkel

Girl on fire

So I ended my last post with hope and it reminded me of a book I’ve just read.

(Note – I realise I am a 40-year-old woman responsible for a child and not an angst-ridden teenager, but I’m don’t care what you think right, I’m a bit of a fan of young adult fiction. And I’m going to slam the door and stomp off to my bedroom to read it. I didn’t ask to be born.)

In the publishing sensation that is The Hunger Games trilogy, young heroine Katniss lives in a dystopian future and enters an unthinkable fight-to-the-death live action programme framed as light entertainment.

Without giving too much away, she turns out to be quite a symbol of hope for the persecuted masses who start to see her as the figurehead for a long overdue rebellion.

But behind the scenes, the film adaptation shows the head gamesmaker and top politician, the twisted minds running The Hunger Games, having the following telling exchange:

Seneca Crane: “Hope?”

President Snow: “Hope. It is the only thing stronger than fear. A little hope is effective. A lot of hope is dangerous.”

And this, I think, is at the heart of my own fight for balance. Not the physical MS balance, that’s a bit of a losing battle, but the emotional MS balance.

Throughout this whole MS journey* I have always strived to keep hold of hope.

I think this is a positive thing and it has often served as a good pep talk for my ailing body: remember, there’s always hope, remember, there’s always hope.

But I’m also conscious that eventually – in each relapse – there will come a point when there is no room left for hope.

Relapses are a perfect example of how a little hope is effective; keeps me positive, keeps me believing, keeps me going - and a lot of hope is dangerous; what happens when reality bites and I need to face the fact I’ve lost that bit of me for good?

Good question, back to The Hunger Games.

The final sentence of that conversation is: “A spark is fine, as long as it's contained.”

Perhaps that’s an example too – keep a spark of hope, but contain it within realistic boundaries. Keep hoping until you have to stop. And then start hoping you will gain acceptance.

There’s quite a lot to read into these kids’ stories you know.

Out of interest, the tagline of The Hunger Games is: “May the odds be ever in your favour.” Let’s have a little hope that’s the case.

:: Girl on fire by Alicia Keys

*Yack, by the way, to the word journey. I can no longer say it without believing I’m on a celebrity reality show.

Hope of deliverance

Continuing my string of hospital visits - four in 10 days, it’s some kind of personal record – I’ve recently had an eye clinic appointment.

This one was to discuss the optic neuritis damage/recovery from my relapse in January.

I’ve hated this relapse. It’s not like I have ones I love, let’s be honest, but this one has been a truly depressing one.

Eyesight is a particularly terrifying one for me: I’m already quite short-sighted, I have posterior vitreous detachments in both eyes and there’s a family history of glaucoma. The cards do not feel stacked in my favour.

I have also failed to find an eyepatch which at once says cutting edge chic and devil-may-care. Although my lovely work colleague did buy me a red lacy boudoir-esque one which may yet come in useful if I’m ever invited to a certain kind of niche party.

The results of this one showed that in the past 10 months I’ve gone from not even being able to see the board on which the eyechart is mounted, to being able to read the third line from the bottom.

My colour vision doesn’t have quite such happy news though – I couldn’t make out any numbers on the colour blindness chart in January and it’s still a struggle to discern half of them. This I knew as I’m aware my left eye sees the world in watercolour not acrylic, but it’s still a bit sad to have it medically proven by the surprisingly old fashioned flip book.

But I’m going to remain doggedly positive as I still have the potential of two more months of recovery, having been told ON can take up to 12 months to recover, if not longer. I cling to the longer.

What astonishes me though (apart from the body’s ability to recover in the relapsing phase of MS) is the time discrepancy between the damage occurring and the subsequent recovery time.

First relapse: 30 minutes for left hand side to be knocked out, six months for recovery.

Biggest relapse: 40 minutes for speech and all motor control down right hand side to go, 16 months for recovery.

Optic neuritis: 60 minutes for vision to go, 10 months (and counting) for recovery.

I say recovery, it’s actually never been 100 per cent, but it’s been okay and to a level I can live with, but good heavens why must it take so long?

Be patient is a mantra you learn to live by when you have MS. Be patient and keep hope.

So that’s what I’m doing for my eye. I will wait and hope and wait and hope until the time shows that recovery will be incomplete. And then maybe I’ll just wait and hope a bit more.

:: Hope of deliverance by Paul McCartney