Poison

For the first time in my MS drug taking history, I feel like I'm actually putting something extremely potent into my body.

I realise the box with the huge yellow 'cytotoxic' sticker should have been a bit of a clue, but somehow it doesn't seem to have properly registered until now.

Maybe it's because I've just completed my second treatment week of my second treatment year. And, in theory, that should be it. 

Maybe it's because I need to dig out my irradiated blood details because we're going away for a couple of nights and I need the card just in case.

Maybe it's because things look to be heading back to 'normal' and I can't hide my immune-supressed self in the house for work much longer.

Or maybe it's because I've actually felt quite rough taking the drugs this time round.

The thing with all MS treatments is that it's such a gamble anyway. There's a possibility they'll work, there's an equal chance they won't.

But all the time, we are putting chemicals into our bodies that, if we weren't unlikely enough to have this disease, we wouldn't dream of doing.

Sometimes I can see why people choose not to.

But what if these ones work, you think. What if they do better than the last ones, or the ones before that?

What if I win this time?

It's the thought pattern of a gambler.

And, quite often, that is what taking the treatments is like. A gigantic roll of the dice with your own body.

This time I chose to land on Cladribine.

Next time, who knows. 

But then maybe, just maybe, I won't need to roll again because Cladribine will do it's job. It's pretty important job of killing off those pesky T and B cells before they make their way to my brain and spinal cord.

And if it works, and good heavens, I really hope it does, then Cladribine, not gin, will become my poison of choice.

:: Poison by Alice Cooper

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

Wishing well

Bit weird to think of an MRI as a wishing well isn't it?

A clangy-bangy tube of claustrophobia, I understand - although my hospital has started putting small mirrors in the machine to help you see out - and sometimes, unnervingly, your own face. 

But wishing well? Perhaps not the first thing springs to mind.

Nevertheless, it's the comparison that keeps popping into my head as my next (and umpteenth) appointment with the machine is this afternoon.

Only instead of loose change, it'll be me delivered into the magnetised well to make my own wishes for oooh, a good hour or so.

And I will be wishing. Wishing that:

• that whatever is found impacts as little as possible on my family
• that the new lesions that I'm sure I have will help determine what drugs are next (while being immensely grateful those drugs are available to me)
• that all the research is getting us closer to a cure
• that everyone affected by this stupid disease has access to the support they need to live their lives as well as possible

Outside of the MRI we can put on a brave face and a happy smile. We can keep calm and carry on because there really is no other option.

But inside it, there's just us and some motionless time to think about why we've been put into that tube in the first place.

To consider how our lives might have been different if only we'd not woken one day to find we couldn't see out of one eye, or couldn't feel our feet or couldn't find the words we used to know.

How we've sacrificed some of the things we might have wanted, how we've reset and redrawn our parameters and how we may have lost friends, family, workplaces or opportunities.

I'm pretty sure MRIs have seen their fair share of confessions, of negotiations, of whispered prayers and of silent tears.

And I'm equally sure that they have seen quiet resolve, internal pep talks, gallows humour and stiff upper lips.

I know I have wished for just a bit more time, for just a few less symptoms, for the chance to make the best of what I have.

I've also asked for help to keep finding the strength to cope. 

I can't always see it but I know that strength is in there somewhere. And I really should learn to realise that I can be proud of that.
Maybe the enclosed tube with its teeny, tiny mirror is the best time to reflect on that.

So wish me well. This afternoon, I will be my listening to some very loud magnets while hoping to also hear the sound of my own pennies dropping.

:: Wishing well by Terence Trent D'Arby

Enjoy the silence

Things it might be wise not to say to a person with MS.*
Think of it as a handy cut-out-and-keep guide.

Haven't you seen the news? There’s a cure!
No, no there isn’t. There are disease-modifying therapies that we can inject, swallow or be infused with that MAY reduce the likelihood of relapses but they are not a cure because a) they don’t stop all relapses and b) they do not repair old damage. There is, however, positive new research and new breakthroughs which may lead to new treatments – but these take a long time to become available to patients as they have to get through in-depth medical trials and licencing approval.

How come your new drugs aren’t making you better?
Because sadly that’s not how they work. They don't repair previous damage, they don't stop all relapses, they are disease modifiers that MAY cut relapse rates but they bring with them a whole range of really quite significant side effects which can actually make us feel more poorly.

So why don’t you just try a different medication, one that doesn’t cause side effects?

Erm, because there aren’t any.

Maybe you should try cutting out *random foodstuff*?

Obviously good diet and exercise is important, I’m not denying this; it’s more the disdainful/evangelical/judgemental proclamations over my choices based on reading one headline - and the assumption that I can’t research and find this stuff out myself as, you know, the actual person with the actual disease.

Maybe you should try adding in *random foodstuff*?

See above

Should you be drinking?

Please leave now. And order me a double on your way out.

Are they only keeping you in your job because you’re disabled?

While I can’t deny this hasn’t crossed my mind I would just like you to have a little think about what effect that question might have on someone.

I knew someone who had MS and they died from it.

Now why would anyone want to hear about that?

Oh yes, I’m tired too

Gaaaaaaaaaaaaaaaaaaaaaaahh.

:: Song – Enjoy the silence by Depeche Mode

*All of these have been said to me.