We didn't start the fire

Right, the plunge has been taken.

The Tecfidera has been cracked open and begun.

I had intended to start the new stuff over Christmas which, although possibly meaning a miserable festive time while I encountered the cornucopia of potential side effects, would have meant I was away from work.

But, as with many things in life, this was not to be as my MS nurse was off sick (still is actually, which is concerning as I have an appointment soon) and I couldn’t get the prescription signed off.

In the end, galloping to the rescue was my neurologist’s marvellous secretary who pinned down her boss and got him to sign it off. Not an easy task I would imagine.

But thanks to her, I was able to start the first week lower dose pack yesterday.

And while this was the day after a night out for a friend’s 40^th birthday, my thinking ran thus: a) if I’m feeling ropey the day after a few pints, I might as well combine it with any GI side effects and b) you can’t put it off forever.

I was prepared with my fatty, yet reasonably healthy, breakfast foods (avocado and banana smoothies – honestly, MUCH better than it sounds) and two slices of peanut butter on toast and took it.

Four hours after taking it I had a pretty firey flush from ears to chest which lasted for around an hour. Husband and daughter were on hand with a cool flannel and the cats merely stared, somewhat unnerved, as I stripped off clothing.

An hour later and the fire was out and my skin was back to normal. Later on, I was so tired I slept through any side effects of the second dose. I knew I was right to take it on a hangover because the evening-after sleeping was never going to be an issue.*

Today has been okay, mild flush, slightly itchy skin, slightly sore tum – it’s the upping to the double dose next week that I’m not looking forward to.

So far, and who knows what will happen next week with the double whammy, the main thing to deal with has been the twice daily, quite literally in-your-face reminder of disease.

As a once-a-week injectable it’s just something that I did on a Thursday and pretty much forgot about.

But with this, it’s every day, twice a day, a big green tablet with a voice which might as well be screaming “You have MS! You have MS!”

Previously I’ve managed to gag that voice – what side effect its constant repetition will have, I don’t know.

:: We didn’t start the fire by Billy Joel

*Please note: pretty sure this is not a medically recommended way of doing things. Don’t listen to me.

Jump

I’ve been off the Avonex for two weeks now in preparation for my shiny/scary new tablets.

I’ve never really minded the needles or the injecting. I didn’t have too many side effects bar an occasional headache and a few more balance issues than usual the day after.

As a medication, I was okay with it.

Unfortunately however, it was not okay with me and didn’t do the job I needed it to. So it’s farewell to the needle and hello to the tablets.

I had it all planned out nicely, I’d start Tecfidera the week before Christmas on the lower dose then up it the week after the big day festivities.

Yes, I realise that new meds over the most wonderful the of the year is possibly not the best present I could give myself when you factor in the potential side effects and lack of medical availability.

But the cunning thinking in this plan was that I have two weeks off work and would rather suss out the side effects at home than in the office.

So all was well. That is until I called my MS nurse today to check on tablet delivery – and found she’s been off sick for two weeks, will be for the foreseeable and therefore can’t sign my prescription. 

Now obviously, she is allowed to be ill, but argh, so much for best laid plans.

However, there is absolutely nothing I can do about it, so there is no point in getting (as my mother would say) het up about it.

This is a relatively new experience for me, this roll with the punches outlook.

Left to my own devices, I am a planner and worrier. I have plans and back-up plans and just-in-case plans. And a plan B for all of those plans.

But I’ve noticed that increasingly over time I have started to let those tightly gripped reigns go a bit – I don’t know if it’s age or parenting (where very few things go to plan unless you sign up to the Gina Ford school of thinking) or laziness or MS.

I’m very aware that stressing myself out over things I have little control over is neither helpful or productive.

So when it comes to the drugs, I’m just going to have to accept and move on – while enjoying a few more festive tipples than I’d though I might. Always a silver lining.

:: Jump by Van Halen

Footnote: we have one part time MS nurse and one neurologist in the densely populated area in which I live. They are trying to care for thousands of people and it explains why the wait for my annual neurologist’s appointment has now increased to 18months. I’m also aware that I’m lucky to have this level of access and treatment options. However, it is still not enough - but that is a longer post for another time. 

You can't always get what you want

I saw my neurologist on Wednesday.

It was the day we woke up to the previously unthinkable news that an orange-faced, insanely-coiffured, intolerant misogynist had been voted into The White House.

And while I leave the political commentating on this almighty mess to people far better qualified than me, I felt it didn’t bode well for the meeting.

But we had the usual chit chat, review of the past few months and those tests that only happen in a neurologist’s office and are, I suspect, designed simply for their amusement.

Nowhere else would you get a person struggling with their balance to be told to close their eyes, put their feet together - and not fall over.

Or with eye damage to put your finger on their finger and touch your nose – without poking yourself in your good eye.

So after the serious medical exam/free comedy sideshow I brought out my list of questions and he went through them all very patiently and calmly.

No, he knows I don’t usually ask this but can’t give an idea of life expectancy and really I need the view of a financial adviser to decide whether to leave my pensions where they are or take them out and go mad on an overseas tour (although possibly not to see our American cousins.)

No, that odd waterfall feeling I have isn’t nerves regenerating but is more likely to be a migraine phenomena (phenomenon? phenomenal? pheremone?) – although part of me is still liking the original explanation so I may hang on to that one.

No, the thing we’re vaguely thinking of doing won’t necessarily be affected by my MS.

Yes, I need to change – and by change, he means upgrade - my medication.

I’ve really, really struggled with this decision. Firstly whether to change, although all the advice and evidence points to the fact I should. And secondly, whether it should be Tecfidera or Gilenya.

In the end – after a few months of research and/or looking for signs from the universe - I’ve gone for Tecfidera – on the basis that it’s almost as effective as Gilenya but doesn’t have quite as many side effects that quite honestly scare me half to death.

So now it’s off the Avonex for four weeks and, assuming my bloods are okay, onto the tablets.

I just need to work out a timetable of when to start – especially as we’re heading towards Christmas and although I’ll be off work for the first tablets and potential side effects, it does run the risk of impacting festivities.

Like the news we woke up to it isn’t necessarily the situation I want to be in, but quite clearly we can’t always get what we want.

:: You can’t always get what you want – The Rolling Stones