moodswing indigo

I started writing this while having Tysabri infusion number 16.

As part of each treatment the MS Nurses have to ask a series of standard questions. Are you allergic to anything. Have you had any infections, cold/flu symptoms, that kind of thing.

One question always provides an opportunity for hilarity: how has your mood been?  

Oh I'm as up and down / miserable as ever. Chortle.

This is because the delightful PML brain infection (Progressive multifocal leukoencephalopathy, sprung from the JC virus) can cause personality change as one of it's first symptoms.

And due to Tysabri's efficiency in stamping on any foreign agents in the Central Nervous System (including the body's own immune system), once it takes hold PML can lead to severe neurological disabilities and - TA-DAAAH! - death. Marvellous.

The Nurse recently told me a story about another MS patient. He was known to be miserable, antagonistic and aggressive to his family and his care team. A proper arsehole.

After a few months on Tysabri he became noticeably more cheerful. He started being more pleasant to live with, stopped picking fights, laughed easily.

The nurses noticed this, became concerned and sent him for an MRI scan which showed the early stages of PML.

Luckily they caught it in time. I wonder how he is now?

the (work) conversation

When I was first diagnosed with MS I was working in a theatre. I tried to keep it on the DL but made sure that the colleagues I worked with every day knew what was going on.

The following year I had a couple of freelance roles. And in each organisation I made sure that I had The Conversation and at least one person knew about my condition.

After that I got my job at my most recent employer. I had The Conversation and told my boss (on the first day!) that I had MS. I was able to keep this fairly hush-hush until I had two relapses in the course of a couple of months. The large amount of time off meant that I couldn't really hide it any more.

So my employment history pretty much consists of a series of 'comings out'. And for the last few years - as my invisible disability has got more visible - I've been pretty much out.

As a member of the CULTURAL ELITE, the people I've worked with have stayed fairly constant - we all might've moved from organisation to organisation but the faces tend to stay the same.

So when I had the interview for my current short term contract, I was able to discuss my health openly, as I knew two of the people in the panel fairly well. Not to say what I couldn't do, but focusing instead on what I can do and do well.

My role offers a level of home working and on the whole it has been good so far. Even so, when I've gone into work, I've found waking up, washing, breakfasting, dressing and travelling to an office for the first time in two years utterly banjaxing.

I recently needed to have a variation of The Conversation with my line manager - the "I know this is part of the advertised role, and we skirted around it in the interview, but the thought of doing it is making me ill and I can't do it and I don't want to".

Y'know, the one where you feel like a complete liability and a dead weight.

I've said it before - and admittedly I've been burned by it before - but people working in arts and culture can be bloody lovely. When I told my line manager that I hated feeling like I was letting her down she said that she hated the fact I had to deal with these issues. Her understanding, and her comment that everybody really appreciated everything I was bringing to the project, was like a load off my mind.

Further proof that I was settling in came later that day. I'd left the office and said goodbye to two other freelancers working alongside me. I nipped to the loo and when I came out, one of them said "are you still here?!"

Then she darted off, saying "I'll race you to the lift!"

Cheeky sod.

Truly I have found my people. Again.

driving, mobility and the 20m rule

I've always loved driving, ever since I passed my test *gasps* over a quarter of a century ago.

When I passed (second attempt, like all the best drivers) I'd always look for a slightly longer route and go for meandering pointless drives for no real reason. Years ago, an ex-girlfriend completed some postgraduate study in York and pretty much every weekend I'd do the 180 mile round trip, returning back home in the Monday morning rush hour. And I liked it.

I've always been a safe driver and my MS hasn't affected my abilities. In actuality, the fact I was able to drive was used as a reason my Personal Independence Payment (PIP) application was turned down last year.

See? We're not joking when we say that this system actively penalises people for their independence.

Anyway. Full disclosure: over the last few years there HAVE been a handful of incidents when I've been driving long distances and my left leg has gotten tired. Which could mean that gear changes required careful planning.

Which is all well and good during normal driving. But recently I decided it was time to stop riding my luck.
I've always driven with manual gearboxes but a couple of months ago we got our hands on an automatic car. And it's brilliant.

It's taken so little time getting used to driving without changing gears that I can't imagine going back to a manual car. Aside from anything else I'm not tired when I get to where I'm going. Plus not having to think about gears allows me to concentrate on everything else which is going on.

I personally decided not to explore other adaptations but what is available is staggering.

Help for driving can include hand controls, steering aids, pedal modifications. Transfer plates and swivel seats which help people get into their car.

There are even roof boxes that can pick up and store a wheelchair, like some kind of benign Transformer.

Obviously these things come at a price. If I hadn't got the enhanced mobility part of my PIP award I would probably have had to give up driving - maybe not today but soon.

There are a lot of people with MS who aren't getting the PIP settlement they should be entitled to and the 20 metre rule is the main reason. It's such a cruelly inflexible rule - especially when MS is a condition which fluctuates on a day-by-day (if not hour-by-hour) basis. It demonstrates a complete inability (or unwillingness) to engage with the reality of the condition.

I've grumbled about the MS Society over the years but their ongoing campaign against the 20m rule is one of their best.

when is independence not independence?

When it's independence in Multiple Sclerosis!

Last week I was invited to attend a workshop in London on this very topic, the first time I've done anything like this.

The objective of the workshop was to:

• Look at what the concept of independence means to people with MS and their carers 
• Explore how MS health and care services can make achieving independence a core objective, to inform the development of policy and practice recommendations

whiteboard? post-it notes? it's a WORKSHOP!!

All in it was a pretty interesting day and I do enjoy chatting to other people who get what it's all about. Also in attendance was a MS Nurse from the Queen's Medical Centre (she taught me how to inject Rebif back in the day!) and someone from the MS Society.

However, it's grimly ironic to note that of the people with MS at a conference on independence, every one of them came with a carer or companion.

For my part, Mrs D was busy so my Dad came with me. Aside from his help with the cognitive and anxiety-raising issues associated with travelling to London, we took my wheelchair. This was mostly for use in getting around train stations - aside from this we were either getting taxis, and obviously I was rocking my sexy double sticks.

In order for me to be independent enough to attend this event, it took:

• A lift from my father-in-law to and from our local station
• My father attending the event with me and transporting me by wheelchair when necessary 
• First-class train travel both ways - for extra room, and less chance of hassles with dodgy loos or gits in your seat
• Pre-booked assistance with getting the wheelchair on the train - I walked to my seat both journeys but it was meant to help my Dad get the chair on board. AN ASIDE: the assistance was provided in each instance (we've all heard horror stories about assistance simply not turning up) but my Dad is quite impatient so we only used it on our outward journey. Every other time he just made it work.
• Taxis - I don't need the hassle of dealing with the Underground

And that's not counting the rest of my family and all the medical professionals who get me to where I can even consider travelling to the extent which I have this year.

Aside from remaining in employment, concerns about financial security and the wobbly nature of the welfare state, this was one of the main things we talked about at the event - the fact that each of us has a silent majority working behind the scenes to keep us going.

So much for independence! It's like the African proverb, "It takes a village to raise a child".

But in my case, it takes a small army to give me any kind of independence.

snake oil radar

In my ongoing health "journey" (ugh) I've tried some odd things. Reiki. Wackily restrictive diets. Prescribed medications which made me go psychotic.

But even I would draw the line at drinking my own urine.

I'm sure* that you will agree.

But the idea of urine therapy is something that popped up on my snake oil radar yesterday.
Don't worry - this isn't coming from any recognised or qualified source. It's just a crank on the internet called Kevin Hinkle, a self-proclaimed urine therapy advocate (is that what's on his passport**?).

In a long and rambling Instagram post (which I won't dignify by linking to here) he talks about its "known" ability to heal disease, including "cancer, arthritis, multiple sclerosis and hundreds more".

He even claims that it will whiten your teeth - common sense tells me that would be the LAST thing it would do. 

Don't worry, he includes some hard-hitting science. 

Because it is created by your own body, it helps to re-educate your immune system as what is foreign and what is domestic. It helps to teach your system and fine tune it to recognize pathogens and invaders. It's similar to reading a book for the second time or watching a movie for the second time.

So that's fine then.

Apologies for the snarkiness. There might be something in this, there might not***.

I've had a deeper look at his Insta profile (so you don't have to) and he spends a great deal of time rubbishing the 'deadly neurotoxin' fluoride, while talking about how the sun protects you from cancer (which can be created by the chemicals in - you guessed it - Sunscreen).

More importantly, this is yet another example of the fact that the Information Superhighway (as all the cool kids are calling it) is a wonderful and scary place.

Anyone can publish something online and reach a potentially massive audience - which is a GOOD thing.

HOWEVER

Anyone can publish something online and reach a potentially massive audience - which is a TERRIFYING thing.

* = fervently hope 
** = pissport
*** = probably isn't

i was looking for a job...

WARNING: contains motivational claptrap

the CULTURAL ELITE in a salon yesterday

Recently there has been a weirdly high number of suitable jobs for which I could apply.

It's strange. It has been a struggle and most of them have been of the "work up application, submit, get no response at all" variety.

But recently a position came up at a city-wide photography festival, a role that was my first ever freelance position (about 12 years ago now!)

So I thought I'd give it a go.

The job description was interesting, in that the vast majority of tasks were desk-based. But there were a couple of curve-balls involving taking journalists on walking tours round the festival.

With the best will in the world, this wasn't going to be something I could do.

I talked it over with the divine Mrs D and she persuaded me to go for it. Show them what I can do and negotiate the rest if and when the time comes.

I had an interview earlier this week and it was fine. Part way through, they asked if there was anything about the job description that I was concerned about. So I told them (even though, as I'd walked in with both sticks blazing, they would have guessed).

After a written task it was over. I felt it had gone ok but didn't hear anything that night.

As the following day progressed with no word at all, I started beating myself up. That job should've been a no brainer. What had I done wrong? Mrs D was more of the opinion that, if I didn't get the job, she'd want to know why. We know people shouldn't discriminate on the grounds of disability but, y'know, they do.

Long story short, they called at around 4.30pm to offer me the job.

It's part time for seven months and I can do a lot of the work (which is totally within my skillset) from home. Perfect.

So for the next seven months, I'll be a fully paid up member of the CULTURAL ELITE again. Did I ever really leave?

(As an aside, I looked for an image of the CULTURAL ELITE to illustrate this post. But on looking at the second image which came up on Google, I realised that I have worked with three of the people in the picture. And I know the photographer. I do not know ANYONE in the image above!)

If anyone reading this is always seeing jobs which they can 85-90% do, don't let the other 10-15% - which might be beyond your physical capabilities - put you off. Have faith, know your worth, and go for it.

(Told you!)

take a picture, what's inside

I don't want to sound dramatic, but my first MRI scan was in a kind-of Eastern Bloc-era iron lung in a pitch black room.

So my MS diagnosis came from a machine which was (in my mind) similar to this image of Agent Jeffries (David Bowie) from Twin Peaks: The Return.

I don't think my brother has ever forgiven me for using a mix CD he'd made for me as the soundtrack to this (genuinely traumatic) experience. I haven't played it since.

The scans I've had ever since have been perfectly lovely, however.

Rooms filled with light, with fresh air pumped into the MRI chambers and absolutely charming staff.

Like all things MS, I get that I'm insanely lucky with this postcode lottery. But again say I - GOD BLESS THE NHS.

It's probably a good job that the MRIs are easier to manage. Because after having one scan in 2005 and not having another one until ten years later, I'm know having them multiple times a year - particularly since starting Tysabri. This is to check for physical signs of Progressive multifocal leukoencephalopathy (PML).

Incidentally, my latest JC virus test came back positive but slightly less so than before. Even though I'll always be considered positive for the JC virus now, it's good to know that it can go up and down.

Not that I can do a damn thing to influence the direction of the count, mind.

I had my latest MRI scan earlier this week. It was pretty brief - around 15 minutes - as I only needed my head doing. I asked if they could play some music into the room to help pass the time - the metronomic soundtrack of 10 loud clangs followed by 14 less emphatic beats gets pretty wearying.

(Yes, I counted them. I said it was a lovely experience, I didn't say it wasn't tedious)

They popped on XFM which happened to be playing "Heart-Shaped Box" by Nirvana. I don't think I've heard that properly since I was researching my dissertation, which was all about the semiotics of alternative music in the mid-1990s.

It might sound like a Mickey Mouse dissertation but I got my degree from a proper University, I'll have you know.

Anyway, it was loud (quiet-loud) enough to cover the MRI. So that worked.

Even though this is inspired by her own experiences of an MRI (IRM in French), Charlotte Gainsbourg's song probably wouldn't have helped all that much.

But this live version is pretty great. And the video is way better than the 1990s MTV monstrosity which accompanied "Heart-Shaped Box".