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