Wheels on fire

So, where are we on the sensory relapse?

Hug - all gone. Thank fudge.

Wet clothes feeling - mostly gone. Huzzah.

Sandpaper hands - stubbornly remaining. Sigh.

But, as Meatloaf once wisely trilled, two out of three ain't bad, so probably a suitable time to celebrate.

And because I don't like making life easy for myself, I decided to mark the occasion with a bike ride.

Now this may not have seemed wise for a variety of reasons: crap balance, ropey grip, general tiredness, non-MS-related clumsyness.

But I felt the need to do something to recognise the almost-out-the-end of the relapse state, so a bike ride it was.

Off we trooped as a family to a nearby (and mostly flat) country park and saddled up.

My word, what a joy it was. I balanced, I whizzed through puddles, I didn't have to think about anything except peddling and smiling.

The absolute best part was trusting my legs to be able to get me up a (very) small hill and then freewheeling my way down the other side, laughing like a small child.

It was completely exhilarating and made me proud, post relapse, of what my body can do and how my mind has dealt with it.

:: Wheels on fire by Julie Driscoll, Brian Auger and The Trinity

Thank U

My boss is leaving work this Friday. This is very sad.

She will leave a massive gap of knowledge, expertise and passion in the organisation, but she will also be a huge loss to my personal working life.

She has been nothing but understanding and supportive to me – even when I managed to end up hospitalised with a massive relapse just 12 days after I’d started.

Yes, I’d voluntarily told her about my MS during interview, but I didn’t expect to have to slap her in the face with it quite this quickly.

Because from her point of view, it was a panicked early morning phone call from an unproven employee with whom she had little personal connection.

A phone call telling her (in a very slurred fashion) that I now couldn’t speak, walk or function anywhere near well enough to do the role that she had entrusted me to do.

Not the best of first impressions.

In the end, the relapse was so significant, I needed more than three months off sick and had to have an extremely managed return to work with equipment organised, transport signed-off and tasks shared. Although I returned to work, it actually took ten months before I felt fully on top of things again and all that time I knew I wasn’t working to the best of my ability.

And I’m aware there are legal requirements and company policies in place that should help with this sort of thing and I know HR teams manage the mechanics of illness all the time, but in the end, it was down to her to look after the day-to-day mess of me that she had been left with.

Without her willingness to back me I doubt I would have been able to continue working in this role. And I really want to work.

It should be patently obvious that trying to keep a job with any kind of chronic illness is not an easy thing to do. For anyone involved.

It takes understanding and support, communication and openness. It takes being scrupulously fair and it means gaining trust. It takes patience and belief and a lot of hard work. And it takes these things from the employee AND the employer.

Distressingly, it doesn’t always happen. Look at the papers, read online forums, ask someone - there are too many people who do not feel they can talk honestly to their employer or who have encountered prejudice and discrimination when they have.

Many people who have been treated unfairly or who do not feel able to continue working, are in that position not because of their health, but because of their workplace.

Many people with MS cannot work – and they should be supported.

Many people with MS want to work – and they should be supported.

I really don’t want to feel useless, either in my personal or my professional life.

So, I’d like to thank my boss for being thoughtful and considerate and kind. For fighting for me and for never once making me feel like I was her workplace burden.

:: Thank U by Alanis Morissette

Instinct

When I was a child I wanted Action Man scars.

No, honestly, I really, really did.

I thought they’d make me look cool and brave and stoic in the face of suffering. That they’d make me look interesting with a glamorous air of survival and mystery.

I can’t remember if I thought about actually wanting to have experienced the pain that would have been required to gain them, although I wonder if I might have accepted I couldn’t have one without the other.

As a teenager I remember seeing the now defunct MS Society poster with the ripped out spine and it making quite an impression in a way other health campaigning didn’t.

It might have been because it was around the time I was diagnosed with scoliosis of the spine – a closely named but completely different condition.

During my university years, I was pretty sure something unpleasant was looming for me in my health. It never overtook my life, but it was always a niggling sensation and I'm sure one that is common to tens of thousands of people.

By the end of my first proper job, when I’d really had enough and had started to question what it was I was doing, I came to dread the working day so much that I would wish for an accident or illness that wasn’t fatal, but was serious enough to excuse me for a while.

And then, one very special day, it all really did come true. I got my scars. But they were all internal. Laced with delicate devastation through my brain and spinal cord.

I have a sinking feeling that lurking in my psyche somewhere is a horrible desire to be the centre of medical attention. A sort of misfiring Munchausen which actually resulted in a genuine illness.

So in my darker moments I do wonder if I have brought this state of affairs on myself.

I know rationally this is ludicrous and it’s far more likely to be some as-yet-unresolved combination of genetics + geography + teenage trigger illness + crappy luck, but it does make me think.

But then I also wonder that if I can bring it on myself, can I get rid of it too? What really is the strength of connection between our bodies and our minds? It’s a fascinating subject and has been the topic of much speculation – some utterly bonkers, some giving false hope, some genuine research.

There’s an Institute of Noetic Sciences which explores the role of consciousness and healing and is carrying out research into how the inner wisdom of both patients and health care providers could be combined with scientific and technological advances for the promotion of health and well-being.

Whether or not there’s really anything in this, I think it raises an interesting question: do we always know somewhere deep down if something is amiss? And if we do, then somewhere buried equally as deep, is there the answer to fix it?

:: Instinct by Crowded House

Suspicious minds

We had an away day at work recently.

Sigh.

The very phrase strikes fear. No matter where I've worked, they are the kind of thing that I look forward to with rather less enthusiasm than I reserve for my smear test.

It’s the ‘fun’ activities, the sneaky feeling that everyone else in the room knows a lot more than I do about their jobs, and the having to make slightly awkward small talk with scary-big-boss while simultaneously trying to work out how the flipping hot water dispenser works.

(As an aside, I’m still convinced this ability to get the hot water from the kettle type thing with its inexplicably complicated push button type opening is some sort of ongoing test within our working lives which will one day separate the truly capable from the utterly, utterly hopeless and we will be pay graded on our hot water prowess. Or lack thereof.)

And, with the addition of MS, there is the constant extra struggle to concentrate and contribute without slurring, stumbling or giving the vacant thousand yard stare. Always a good one to bring out at 3pm when scary-big-boss asks you a fundamental question which could determine your entire working future at this organisation.

Anyway, as it happened, it wasn’t bad at all. The fun activities were actually fun and we had the benefit of a truly inspirational speaker, Dave Heeley – or Blind Dave as he is known. Find out about his incredible achievements.

I also had the extra surprise of being given an award for my work. I’ll quickly add that this is not a post to brag. This is a post examining my unexpected reaction to this very pleasant surprise.

This is to wonder why my immediate thought was: “They’ve only given it me because I’m disabled and they feel sorry for me.”

And it’s not just the award. In self-doubting moments, I also wonder if I only got my job because I was helping up some kind of inclusion representation on their employee database.

When did I start becoming so suspicious? Or self-doubting? Is this what 12+ years of MS has done? How much disability prejudice have I internalised without being aware of it?

It’s a dangerous route to go down because it means that I’m not separating the ME from the MS. And yes, I’m aware that – for larger or smaller, depending on the day – MS and I do have some kind of parasitic symbiotic relationship, but I don’t want it to become the relationship that completely defines me.

So I’m trying my best to kick down the nagging voice of doubt and instead accept the recognition on face value. Perhaps it’s not pity, perhaps it’s actually that I’m not really terrible at my job.

Even though I will never work out the secret hot water pay and grading challenge.

:: Suspicious minds by Elvis Presley

Waterfall

We spent our half term at Butlin’s.

Ooh, it’s technicolour mayhem, but we love it. For my daughter, it’s great, it feels safe and is full-on entertainment with a week of mummy and daddy agreeing to pretty much everything she wants to do.

For my husband it’s great as he gets to eat huge breakfasts every day and see Billy Bear on a regular basis. He’s a big fan of cuddly toys that speak – we have quite a few in the house. As I suspect our daughter starts to become too old to be the excuse for his cast of voice characters, Billy gives him an outlet.*

For me Butlin’s is great as we’ve been a few times so the whole process is massively familiar thereby lessening cog fog worries and if I’m well enough, I can swim at any time I want to.

I’m at my happiest in the water. Alright, I can’t feel the temperature until the water hits my chest, but this is a plus because even the cold local pool feels like Barbados from bra level down.

So we swam every day and did, indeed, have a splashing time.

I even had the energy to go on the slides including the slightly insane Space Bowl which shoots you down an enclosed green tube and into what can best be described as a gigantic goldfish bowl which you circle in an ungainly fashion before being ejected at frighteningly high speed into a plunge pool.

Fortunately, being short sighted, I had to take my glasses off to go on the ride and therefore avoided seeing the faces of the spectators when I pitched half-laughing, half-shrieking sideways into the blue. I was a lycra-clad chlorine triumph.

But it took me the whole four days of swimming pool going to pluck up the courage to go on the Space Bowl.

It wasn’t the inability to see things clearly (myopia + optic neuritis have made me used to that), nor was it the warning signs stating “this ride is not recommended for people with medical conditions.”

It was more the belief that I could still be the person that could do that kind of thing; that I didn’t have to be limited – for the time being at least – by my physical or emotional state.

It was also a nod to my own longed-for signs of recovery, a weird little waterfall feeling in my head.

The first time it happened I was petrified, my entire head felt like cold water was coursing endlessly through it and I was sure another relapse was happening.

I was told once that the feeling signifies nerve pathways coming back to life. I don’t know if this is true, but my head waterfall only tends to happen during recovery so I might continue to believe it.

So cheers to the Space Bowl for making me happy. And cheers to the waterfall, long may it run.

:: Waterfall by The Stone Roses

*Although he has started to refer to Billy Bear as Champagne Billy for reasons best known to himself. It’s entirely possible that in my husband’s head, Billy Bear has a trust fund and plays polo.