Yes

It’s been almost 12 months since I stopped Avonex and I’ve noticed something missing.

Not the handful of painkillers that I was taking to help with the shots, not the reliable day-after headache, not the increased dizziness - nothing physical.

It was that feeling of being just a bit, well, down.

Admittedly, I will whine where necessary - but it wasn’t that sort of a feeling, it wasn’t a whine with a reason, it was a slow moving insidious creep of a downer.

To begin with, a few weeks off Avonex, I wasn’t sure if I was imagining it. Had I’d simply had a pleasant few days and was just generally feeling brighter, or was something more meds-based happening?

Being brought up on Adrian Mole, I do still keep a bit of a diary and I trawled through it last night to look for evidence.

And yes, there they are, a number of references to feeling down or a bit depressed, and they are mentioned with increasing regularity during the time I was injecting.
But now? A year off the Avonex? Not so much.

I asked my MS nurse about it and she confirmed that despite initial patient trials not flagging any issues, in ‘real life’ use the beta interferons can be a cause of low mood, with Avonex being a particular offender.

People close to me have experienced depression and anxiety and we have spoken about it quite extensively, so why, even though I’d recognised it in my diary, did I not pay enough attention to my consistently low mood?

It also wasn’t a topic that came up in any of my health reviews – but I wonder if it had, would I have just dismissed it as a bad week or would I have made the connection and mentioned it?

I’d been on Avonex for 18 months and it’s only now I’m not that I notice the difference – I’m not so tired, I’m more engaged, I’m not so, well, down.

Obviously the interferons work well for a lot of people and I’m certainly not advocating anyone coming off them, but it is worth being aware of how you feel and noticing any changes. 

And it's not just the drugs - MS can impact our minds just as much as our bodies. We need to listen to ourselves and talk about our difficulties.

For everyone, mental health is just as important as the physical sort.

It was World Mental Health Day yesterday and the following links may be helpful:

• The MS Society has a really useful booklet about mood, depression and emotions as well as online information about MS and mental health.
• The MS Trust has some practical steps to help manage emotional wellbeing.
• Support is also available at Mind.

:: Yes by McAlmont and Butler 

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

Ac-cent-tchu-ate the positive

I had an interesting chat with my MS nurse earlier this year.

I’ve had a few of these, but in this particular one we were discussing upgrading my medication.

Background: It took me 10 years to agree to drugs (although when I was first diagnosed, we were still in the watch-and-wait era) but I finally had such a doozie of a motor relapse just after I started my new job that I agreed to Avonex. Twenty months later and another relapse shows Avonex is not working, so it’s onto either Gilenya or Tecfidera. I have yet to decide which side effects I fancy.

This latest relapse took the bulk of my colour and normal vision in my left eye and, because it’s my eyes, remains my scariest relapse yet. I initially panicked then cried a bit and then bought an eyepatch, carried on working and braced myself to wait and hope for recovery – if ultimately only partial.

I thought I’d done quite well with accepting my situation, until my nurse suggested to me that I might be in denial.

Oh.

Initially I agreed – she’s the expert and would know better than me.

But then I did a bit of proper thinking about that particular relapse, and to be honest, a bit more about MS in general than I usually do. And these are my thoughts – bit jumbled but let’s try:

It’s possible there are bits of me that might still be in denial, even after all this time, but I’m not sure that’s the full picture.

Some of my response is simply wanting to appreciate the moments when I’m ‘well’ - or at least the well I’m at now rather than the well I was pre-MS almost 13 years ago.

Some of it is that I’ve just considered myself to be quite lucky with my relapses and recoveries – recovery has never been 100 per cent, but it’s been enough - so I just try my very best to remain as optimistic as possible while also being very mindful to not take those recoveries for granted.

I think when there has been the degree of recovery I’ve experienced – or maybe it would be better described as the ‘degree of recovery that I am very grateful for’ (perhaps not the same thing as an impressive medical recovery) then I don’t like to dwell too much on what might or might not happen.

And I know that bits of me will never recover but I’ve just got so used to the parts that don’t work that I’m mainly just happy with those that do.

So if this is denial, then I guess I’ll take it.

If it’s acceptance, I’ll take it.

If it’s the power of positive thinking, I’ll take it.

Although that very phrase makes my entire body want to cringe.

:: Ac-cent-tchu-ate the positive by Bing Crosby