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

(Let me be your) Teddy Bear

We're back at Butlin's!

Hurrah for:

• the familiarity that prevents the cog fog
• the catering that helps the fatigue
• the AMAZING new swimming pool that eases pain and stiffness
• the family time 
• Billy Bear

:: (Let me be your) Teddy Bear by Elvis Presley

Untouchable

I've been in a lot of pain recently, which has been rubbish.
Painkillers aren't helping, physio isn't helping, rest doesn't seem to be helping either.

While it sounds horribly pretentious - and I perhaps need a word with myself - my bouts of pain always makes me think of the poem Musee des Beaux Arts by W.H. Auden.

He writes that suffering is an intensely individual and personal experience. As outsiders we can only sympathise vaguely before simply carrying on. And that's if we even notice at all.

In a strange way I find this comforting.

Musee des Beaux Arts 
 
About suffering they were never wrong,
The old Masters: how well they understood
Its human position: how it takes place
While someone else is eating or opening a window or just walking dully along;
How, when the aged are reverently, passionately waiting
For the miraculous birth, there always must be
Children who did not specially want it to happen, skating
On a pond at the edge of the wood:
They never forgot
That even the dreadful martyrdom must run its course
Anyhow in a corner, some untidy spot
Where the dogs go on with their doggy life and the torturer's horse
Scratches its innocent behind on a tree.

In Brueghel's Icarus, for instance: how everything turns away
Quite leisurely from the disaster; the ploughman may
Have heard the splash, the forsaken cry,
But for him it was not an important failure; the sun shone
As it had to on the white legs disappearing into the green
Water, and the expensive delicate ship that must have seen
Something amazing, a boy falling out of the sky,
Had somewhere to get to and sailed calmly on.

                               Landscape with the Fall of Icarus by Pieter Brueghel

:: Untouchable by Rialto

Painkiller

In a way which is very, very different to the Fifty Shades sort, I have recently experienced pleasurable pain.

Yes.

No restraints, compulsive lip biting or red rooms required for this one, just a pair of humble high heels.

And the reason for the joy is that – my feet hurt!

The soles of my feet hurt!!

The soles of my feet which have not been able to feel anything for almost 10 years, they hurt!!!

I’d noticed in the summer that the feeling had started to come back to my feet but the sensation got a really good workout recently at my friend’s wedding where there was lots of emotion, lots of prosecco and a helluva lot of dancing.

And by the end of the night, as the band played themselves out, I was finally able to join the cohorts of ladies rubbing the soles of their feet and cursing their fancy shoes.

I haven’t been able to do that for nearly a decade.

It was a curiously pleasant pain because it confirmed the return of sensation, something I had feared was long gone.

It’s a pain I welcome, rather than one of the many sorts of MS pain which I really don’t.

Interestingly, up until the 1980s, MS was thought to be a painless disease. It was presumably thought of as this by medical types who didn’t have the disease and therefore didn’t actually know how ruddy painful it can be.

Types of MS pain I have experienced, in a countdown of hideousness:

5) L’Hermitte’s Sign – a sensation similar to that of an electric shock running down the spine when the head is bent forward. Makes washing hair over the bath an impossibility.

4) MS hug – it’s really not friendly

3) Optic neuritis – stabbing pain whenever I move my eye a fraction followed by sight loss you say? Not today, thanks.

2) Trigeminal neuralgia – nicknamed the suicide disease. Horrible.

1) I don’t actually know the proper term for this one, but it was worse than labour. And I can say that as I’ve done both. It started in the night as a severe burning pain across my stomach. This then led to screaming agony, paramedics and gas and air (pointless) as the sensations spread across my entire body and there was no way to be that wasn’t pain. My neurologist suspected that all the nerves in my body had gone into spasm all at once. For more than five hours. Heralded a relapse, obviously, but I took the view that the resultant destruction of sensation from my chest down was worth it to get rid of the pain that started it.

So the recent normal, high-heeled, dancing pain has been something of a pleasure. Which is just as well as I have another wedding in a couple of week’s time.

Bring on the dancefloor.

:: Painkiller by Turin Brakes