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

Toxic

Covid finally caught up with the Scrambled household recently.

While we've avoided it for almost two years, it has been seeming inevitable for a while - daughter's class has been affected by Delta (pre-Christmas) and Omicron (post) so the chances of avoiding it have been slim to non-existant.

And when the double line showed up on her test a couple of Sundays ago, it was only a matter of time before we all had matching LFTs.

And so it was. Fortunately, it was mild. Daughter bounced back within a couple of days. Husband and I had what felt like an extremely heavy cold.

My taste and smell went, but seems to be heading back, but my word the tiredness. So a few days off work then a week of dragging myself back through it and here we are.

Being CEV (blimey, the new language we have) I was able to access an infusion of the new antivirals. So into hospital it was for a couple of hours to receive them.

But not before frantic calls to my MS team to check I could actually have them - because, almost unbelievably, I'm in the middle of Cladribine treatment.

Yes - after waiting 16 months for my lymphocytes to struggle back to clearance level and finally getting the drugs - I was taking my last tablet of week one on the day Covid was confirmed in the house.

The timing is soap opera-worthy. As is the fact I took day one of the course EXACTLY 18 years to the day that I was taken into hospital for my first relapse.

But my MS nurse cleared things (in, I have to say, the quickest ever call back I've had) it so onto the infusion I went. Hard to know if it helped, but better to have than not.

So now it's just a case of making sure LFTs remain negative before I start my second week of the drugs that come with cheerfully yellow warning stickers.

Will they work? 

Unknown, but hoping.

:: Toxic by Britney Spears

Girl, you'll be a woman soon

Eighteen years with MS, eight things I've learned:

* Seek advice, but

* trust yourself.

* Learn what you can, but

* don't become your illness.

* Fight if needed, but

* it's ok to back down.

* The options get fewer, but

* the choice remains yours.

:: Girl, you'll be a woman soon by Urge Overkill

Get lucky

Brand new year, same old tests.

Yet another blood test tomorrow to see if my lymphocytes have managed to struggle their way any closer to the magic 0.8 which means Cladribine clearance.

Reasons this is unlikely: they haven't managed it in more than a year, I have effing shingles, I remain utterly knackered, it's cold and, judging by previous readings, they seem to have liked the warm better.

Reasons it may happen: had some time off work over Christmas and essentially slept for a large chunk of it, MS nurse suggested I take multivitamins, time is passing and they're meant to rise as the months go by.

I'm honestly not hopeful. And I am beginning to resign myself to the likelihood of not being able to take my next course - and instead embarking on the deeply stressful process of choosing something else.

That is, if I can take something else after the battering my immune system has taken over the past year or so.

GAH!! As if the MS wasn't bad enough, it's all the other logistical and emotional shit that accompanies it which makes it so utterly exhausting and relentless.

As I read the other day, having a chronic illness is like being handed a full-time job you never applied for and can't quit.

An occasional day off would be nice though. Or a pay rise.

Or a helpful blood test.

:: Get lucky by Daft Punk, ft Pharrell Williams and Nile Rogers

Shingle bell rock

It's been a busy old time of late - hence the utter lack of blogs for December.

Not only has work hit a peak of frenzy, but general home life has too. 

There really has been no hope of resting, even though this is exactly what my MS team have been advising for a while.

They know they're right, I know they're right - and that rightness has now been proven in ANOTHER BOUT OF RUDDY SHINGLES.

Happy Christmas to me.

But I have now broken up from work and am going to try my very, very best to stop.

Not least because I don't want to face another disappointed phone call from my MS nurse.

Never mind Santa, it's her naughty list I really don't want to be on.

So festive greetings from me for a calm, restful, healthy and happy Christmas.

And a happy new year. Although goodness knows what it holds if the last two are anything to go by.

:: Jingle bell rock by Bobby Helms

Counting sheep

Bloody hell, MS.

What, what, what is the point in enforcing fatigue if you also insist on insomnia.

Grumbles to self. At 2am. And 3am. And, obviously, 4.

:: Counting sheep by Airhead

Love rollercoaster

Oh good grief, it appears that I am living in a medical Groundhog Day.

Lymphocytes won't shift in the right direction, so more blood tests booked, more stress, thereby exacerbating MS symptoms and more hanging on the ruddy phone.

And to top it all off, I have Fucking Shingles* for the second time this year.

Presumably a gift from the Cladribine fairy. Despite the fact I can't actually take the Cladribine because my lymphocytes are stubbornly refusing to rise.

It's all so unutterably tedious and, also, faintly unbelievable when it comes to describing the interactions between MS on its own, MS drugs, Covid  booster jab and flu vaccination.

1) I have MS and all the shit that entails.

2) To try and prevent the shit, I have to take the Cladribine.

3) The Cladribine smashes my immune system, leaving me open to varying nasties.

4) Examples of which are Fucking Shingles* and also Covid and flu. 

5) We have vaccines against these last two. But to get any use from these vaccines, my lymphocytes have to be at a decent level.

6) Which they aren't because I have to take Cladribine.

7) Which is meant to help my MS and all the shit that entails.

They're so reliant on each other that to an outsider it just sounds like utter gobbledegook.

To be honest, I'm beginning to despair ever getting out of the low-lympocyte-loop.

It's like being on the world's crappiest funfair ride and I feel very tempted to bang on the payment booth and demand a refund.

:: Love rollercoaster by Red Hot Chili Peppers

* Medical term