Yummy, yummy, yummy

It was MS nurse appointment day on Monday.

Once we’d got the nice news out the way – she is to become a grandma, I didn’t get lost on the drive over – we got into the Tecfidera review.

As previously mentioned, I have been suspicious of the lack of side effects to date. Thus far they have amounted to a couple of hot flushes and a bit of a runny nose.

When I first picked up the prescription, I was given a factsheet outlining all the potential gastro-intestinal side effects and all the over the counter medication I could have in stock to try and ward them off.

I have yet to experience them and I DO NOT WANT THEM (block capitals in case they’re reading this) but with 4 out of 10 people experiencing them, I am still anticipating. Especially as week three is the peak week (ooh, that rhymes.)

But alongside the medication was the note that Tecfidera needs to be taken with a decent sized meal with good fats as this has been shown to reduce some of the effects.

I may have taken this a bit too much to heart by scarfing down avocado smoothies and peanut butter like there’s no tomorrow.

But if my increased quantity of foodstuff is so far supporting my tum, then it isn’t helping my waistline.

I had the usual weight and blood pressure test before I saw my nurse and found that I’d put on a few pounds – now, I’m not saying this is purely down to the Tecfidera and may well be a hangover from a foodie and boozy Christmas, but it did make me consider that of the many crappy effects of the disease, weight gain is a massively irritating one.

To be fair, the odds are stacked against us– with a variety of medications directly or indirectly causing the pounds to pile on, the decreased mobility which limits the sphere of exercise or the bouts of fatigue which mean lifting an eyelid is as difficult as lifting a barbell.

But, really, if I’m on the Tec for a while (lymphocytes and liver dependant, obviously) then I can’t keep scoffing and for my waistline and my general health will have to start exercising.

With this in mind, I shall be swimming on Friday – how far and for how long I do not know, but it’s a start.

:: Yummy, yummy, yummy by Ohio Express

Interesting aside: we went to the cinema this Sunday then, thanks to Metro vouchers, to the golden-arched temple of unhealthiness for lunch afterwards. Over my munching I heard the dulcet tones of my neurologist who was presiding over a children’s birthday party. We chatted and I felt compelled to tell him that I don’t eat this stuff often. But then I reflected that if it was okay for him then by almost medical decree, it’s okay for me.

Army

I hit thirteen years with MS yesterday.

I know, exciting times.

So in honour of this inauspicious occasion (although an occasion nowhere near as inauspicious as the one happening across The Pond today) I have compiled a little list of things I’ve learned.

1. Eye patches are cool: well, they’re not are they, let’s face it. But they might end up being one of the aids (temporary or otherwise) that will make your life that bit easier. Same goes for all those other medical appliances that I try not to look at in the catalogues, but that one day, when I’ve dealt with my pride, might help me.

2. Advice is helpful, but it really is okay to trust your instincts: By all means seek advice, seek it from medical professionals, fellow MSers, online forum boards, friends and family. But you don’t have to agree with it. If something doesn’t feel right to you, or for where you are at that moment in time, listen to yourself.

3. Humour is a remarkably effective lifejacket: This is so, so important. It’s not that you have to embark on a stand-up tour as soon as you are diagnosed or turn every crappy incident into a gag-filled after-dinner anecdote, but do try and retain your ability to laugh. Multiple sclerosis takes enough off you, don’t let it take this precious weapon.

4. A bit of hope is stronger than a lot of fear: I’ve written quite a lot about hope in this blog and where I stand with it. I maintain that it’s helpful and I’m trying to keep it central as I continue with the Tecfidera.

5. I owe a massive debt of gratitude to my family and friends: obvious, but incredibly, incredibly important. I didn’t know, 13 years ago, quite what the hospital admission was going to mean. I didn’t know it was going to shape my working life, my family plans or continually force subtle shifts in my perspective and personality. But I do know that without my family, my friends, my husband and my daughter I would not have got this far. Thank you all for the phone calls, the desire to understand, the surprise presents in the post, the meals cooked and delivered without me having to ask, the childcare and the pep talks. Thank you for the night-time hugs, the daytime support, the rides to hospital, the cups of tea, the steadying arms, the physio teamwork, the care, the concern and the laughter.

This post is dedicated, with love, to everyone in my army.

:: Army by Ellie Goulding 

Wouldn't it be nice

I've just been to the dentist to have a filling replaced.

Yes, you see, this is why you read this blog, for these glamorous little insights into my life. I've also done a full load of washing and planned the meals for the week.

Anyway, I started the appointment by dutifully updating my dentist on my recent medication change.*

Now bearing in mind I have seen this dentist for a number of years, completed endless medical screening questionnaires provided by the surgery for their records, explained to him a number of times I have MS and taken him through why infections are so potentially dangerous, he still looked blankly at me and asked what I took medication for.

Deep breath.

“I have multiple sclerosis,” I said for quite possibly the 27^th time. Maybe I should make it into a little La La Land-esque show tune, he may remember if there was a charmingly nostalgic song and dance routine attached.

“But you look so (and I waited for it, fully expecting the w-word........) nice.”

Erm, nice? Did he say nice? Not, perhaps, well? I replayed the moment.

No, he definitely said nice.

This stumped me so I mumbled something incoherent about hidden illnesses and sat down in the chair. 

I felt ~ great word alert ~ discombobulated by this pronouncement. I'm pretty sure he didn't mean 'nice' as in attractive as I was wearing far less than the usual amount of makeup that I generally rely on to be classed as passable.

So what was it? Was it an unconscious choice of words that passed some sort of judgement on the kind of people who should get ill?

I wonder just how many people share this bias; that looking – or being - nice should somehow protect us from any unpleasantness in life.

That crappy things are only meant to happen to people who look a bit, well, unpleasant?

Or am I over-thinking it and did he actually mean to say the usual ‘well’ but got a bit flustered at dealing with a disabled person? 

I didn't have much time to ponder it as a few minutes later, patched up, I went downstairs and looked at the bill.

And I can assure you my internal language was anything but nice. AND there was no sticker.

:: Wouldn't it be nice by The Beach Boys 

*Tecfidera update: I'm suspicious. I upped to the full dose yesterday and bar a very minor flush and prickly skin incident, things appear to be oddly quiet. My Tec diary tells me to expect the peak side effects in week 3 though, so I'm trying not to get lulled into a false sense of security.

Mr Brightside

Perspective. Comparisons. Sliding scales.

They’re all interesting phrases when applied to the way you view things – wealth, achievements, career, family, life. Illness.

Like a number of chronic diseases, the perceived seriousness of MS sits on shifting sands depending on who you speak to.

Perhaps you’ve dealt with reactions from people at the oh-it’s-not-so-bad end of the scale. They’ve seen someone being amazing on the Paralympics with it. Or know a friend’s mum who has had it for 25 years and still doesn’t need a walking stick. Perhaps they know someone who works fulltime and goes to the gym every other day?

On the other hand, perhaps they’re at the other end of the scale and they’ve got a pretty bleak outlook for you. Maybe they’ve cared for someone with the primary progressive form? Watched someone deteriorate before their eyes? Seen someone in the end stages of MS?

It’s entirely possible you’ve dealt with these – and many opinions in between – from the medical community.

During the summer I saw a gp I don’t normally see. He asked how I was generally and we had a general chat about MS and recent research.

He concluded by saying it would be good for his newly-diagnosed patients to see me still working and with a family.

“Because really, for you, it’s just an inconvenience,” he finished. With a reassuring smile, believing he’d said the right thing.

And, if I take a deep breath to calm down and think about that proclamation, then to some degree he was right. I’m currently not hugely debilitated. I still work, drive and most of the time I appear to function like everyone else.

To a gp, who is bound to come across far more aggressive cases, he may well believe he could describe my MS as ‘an inconvenience’ and there’s a little bit of me that sort of accepts that.

But to me an inconvenience means a flat tyre or the radiators needing bleeding or running out of teabags.

It does not mean slipping down the workforce ladder because I know I couldn’t manage it or missing most of the things healthy people take for granted or making the painful decision to not extend our family.

None of these things would I describe as ‘an inconvenience.’

So while I do recognise that I am somewhere in the middle of the health-death track bar, I think we would all like recognition of our own personal scales and a bit more consideration of what might actually count as our inconvenience.

:: Mr Brightside by The Killers

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.

Help!

I get the train to work.

I like it. Generally it runs on time, I get a free newspaper and I can people watch (one of my favourite things.)

It also lets me wind down after a day in the office and I can think about dinner/read a book/switch off without causing a road accident.

This week it’s also let me do a little bit of thinking about employment, employers and some of the practical help I’ve needed to keep me in a job.

My working life has seen me in the private then the public and now the third sector – quite a variety, but the one common thread is that it has never been easy being at work and having MS.

Surprisingly however, some of the hardest battles I’ve had weren’t with my employers – who have generally been quite understanding and supportive, if a little bewildered by the vagaries of the condition – but with the people ostensibly put there to help.

Access to Work was a particular struggle. Great idea, rubbish execution.

Not the lovely man who came to sort me out with fancy office equipment and an impressive James Bond-esque villain’s chair. (Although still slightly disappointed by the lack of ejector seat, take note office suppliers.)

But the woman on the end of the phone being incredibly difficult about the process by which to claim transport to the office. The woman who quite clearly didn’t believe I was unwell even though I had a letter from my medical team, copies of my scans and occupational health reports. Plus I had wobbly tear voice on the phone so it must have been true.

Perhaps I just got a jaded fed-up worker, perhaps she’d seen a few scams (although the whole flippin thing is so complicated and exhausting I almost, almost, take my hat off to anyone who can scam the benefits system) perhaps I was unlucky enough to just speak to a bit of a jobsworth.

Perhaps she was secretly just trying to save me from the taxi drivers. This may have been it as the taxi/passenger conversations during the time I needed to use cabs were quite eye-opening.*

Or perhaps I should stop excusing her.

Perhaps people who deal with claimants with chronic variable illnesses could do with a bit more training and understanding about chronic variable illnesses.

That would seem to make sense.

:: Help! By The Beatles

*They ranged from the mundane – weather, potholes – to the wholly unexpected; marital guilt (theirs), how to fiddle taxi claim receipts and the fertility issues of two separate cabbies. I unwittingly became a trapped confidante in some sort of mobile secular confessional.