Category Archives: Daily Life

Nothing About Us, Without Us?

The news came through a few weeks ago that the medicine I chose to tame my multiple sclerosis (MS) had been restricted by the European Medicine Agency.

Obviously, having had three courses of Lemtrada, I was concerned.

I read further.

22,000 of us have had the treatment. 39 strokes have been reported, often within hours of treatment. There are many other statistics I can’t make head nor tale of, as they are written up in medical lingo. In my experience, I had a horrendous flood of weakness after the first administration, then nothing. Just the usual tedium of being hooked up to a bag on a stick for several hours.

I was contacted by various people, worried that I hadn’t heard the news and I would drop dead fairly soon.

I didn’t die, but discovered that the overall risk of stroke after (Lemtrada) may not be statistically greater than stroke in the untreated multiple sclerosis population.’ When I decided to take Lemtrada, I knew the risk of Grave’s disease – which I had – leaving endocrinologists flummoxed as Lemtrada-induced Grave’s was a whole new ‘illness’.

So, I packed on weight. Gah. But, in the grand scheme of things, I would rather be fat (which I am) and happy than skinny and immobile.  I took the risk and it didn’t work out. It happens.

The temporary guidance advises that Lemtrada is only used on new patients after they have previously tried two other Disease Modifying Therapies. That just doesn’t happen with Lemtrada – it is a first line defence, for those of us who experience  a rapidly-cycling form of the illness. By the time a newly-diagnosed person has gone through two other treatments, they are no doubt not eligible for Lemtrada.

Within this whole confusing scenario, I wish the EMA had reached out and asked some us how Lemtrada had worked. But apparently their guidelines have not mentioned patient input.

So 22,000 of us have no voice.

This is completely unacceptable. Any form of medical restriction must involve the patients who have already taken the drug? Surely this is the first and foremost consideration?

It’s an oft-used phrase, ‘Nothing About Us, Without Us’,but when it comes to halting MS, we should be consulted.

Why wouldn’t we be?

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Less Can Sometimes Mean A Whole Lot More

I lived with a millionaire for four years.

I know, weird, huh?

Shortly before that, I was a cash-strapped au-pair in Austria. On pay-day (£35 a week), I schlepped to the supermarket on the main square and bought a single vanilla yoghurt.

It was the most delicious treat in the world and made the endless toddler-wrangling of the previous seven days all the more worthwhile.

When I was living with my new partner, I went to the same supermarket and bought five and ate them all in one go.

They were awful. The taste had gone. When I could have as many as I wanted, I didn’t want them and that unique taste which made them so irresistible had died.

Fast-forward a few years and I’ve pretty much been cash-strapped for the last two decades. Unexpected bills, a brutal divorce, a rapidly-growing child, school trips and all the other weird and wonderful paraphernalia of bringing up a child without passing on the money worries to him took its toll. But we got through it, trimming bits here and there, never making him feel he was different from his friends.

The Teenager would often come home from school and find me giving a new lick of paint to my most recent Gumtree find, or extolling the virtues of an empty pot of earth, which eventually grew into a chestnut tree. Until he went to high school, a lot of his clothes came from charity shops, as did most of his books. Despite the roller-coaster of financial ups and downs, we always just about managed to get through.

Then MS hit and the reality of losing my job and taking on alternative work at a much-reduced wage was tricky. I realised I was never going to earn a decent income, so I ploughed this anxiety into studying instead and it’s been the making of me.

There’s nothing more heartbreaking than your teenager asking you if we were ‘poor’.

We weren’t. Poverty is relative. He always had what he needed, perhaps second-hand, but he had it nonetheless. Technically we were disadvantaged and according to statistics, living close to the poverty line, but he did not need to grow up with that stigma.

Now The Teenager is forging his own life at University, I can fully appreciate the fantastic house we have created – our plant pots may come from a skip, but they produce a wondrous ambience. Our garden table and chairs are from Gumtree and were nothing a quick wash didn’t solve. Most of our furniture is second-hand, but lovingly-chosen and restored, the rest is donated.

Living with less – financially and health-wise – really made me wake up and appreciate every single thing I have. I’m not denying it was difficult but when I welcome The Teenager back home on vacation, I feel proud that we have made such a cosy and warm environment. The love and care that has been put into our house speaks volumes and I always want him to feel he has a safe space to come home to.

Looking back on my ‘Five Yoghurt Scenario’, it really did teach me many valuable lessons – you can’t take it with you, love is priceless and be careful what you wish for.

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Aw, No, Not Again?

My three worst MS symptoms are fatigue, nerve pain and brain fog, in no particular order.

To a lot of people, this sounds fairly manageable; we all get tired, a bit fuzzy in the old brain and we all have aching legs and arms? Yes, but, I’m only telling you the three worst symptoms, and there’s plenty more.

Anyway, I like to think I’m quite savvy with my MS comings and goings, yet it never, ever fails to surprise me.

Long story short, the MS fatigue is back with a vengeance and it means serious business. On Sunday, I felt so tired, I actually wanted to throw up. I flung myself on the sofa and was dead to the world for two hours. On Monday, I called in sick to work and went back to bed. Twice.

I went to work today (I have to, bills), navigated the terrain really well and luckily we finished early. My lovely boss even walked up the road and payed a cheque in for me while I sat on the door step of the house we are working at, feeling quite useful as I watched out for parking wardens.

Back home, I got out of the works van, stood on the ground, then my left leg gave way and I just collapsed. Bit embarrassing, extremely painful, hope the neighbours didn’t see.

So I have a flare up and it’s a bad one. I haven’t been like this for months. Every part of me is saying, ‘breathe, take it easy, it’s fine’, but inside I’m fretting. I’ve already missed so much time off work and studying has been pared back to the absolute minimum.

Brain fog has ensured that for the last two weeks I’ve run out of stuff to watch on Netflix and Amazon and am looking forward to the next series of ‘Married at First Sight’. Anything is easier than picking up books.

I’m trying to look after myself though – the boss makes sure I get to shops for food, he’s understanding about the time off and he cheers me up no end when we’re sat in the van putting the world to rights, as builders do. He even bought me a burrito today and expressed surprise when I swooped in on his leftovers, ‘nom, nom, first cooked food I’ve had in days‘.

I know this will pass, it’s just that awful sinking feeling when you know you’ve got to ride out the latest setback. I’ve instigated Code Red, the Ten Minute Tomato Rule – try ten minutes of everything. So laundry is in machine. Cat is fed (she’s on a Whiskas strike and will only accept Sheba – it’s a battle of attrition). I vacuum for one minute every other day and take nine minutes out.

It will all be fine. In the end.

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Playing The MS Game

Almost seven years after my diagnosis, and years of symptoms before that, I think I’m now fairly adept at playing the MS Game.

I know when it’s best to:

Wake up – 5am – brain at fullest function, emails, print things off, brainstorm Uni stuff. Coffee helps.

Shower – straight after work (I know, weird, huh?) but working as a builder, it’s best to wait until after work as I just can’t handle two showers in a day. I shove my hair under a woolly hat and hope for the best (and some customers call me ‘lad’, gah).

Cook – a moveable feast – whenever I have the energy. Freezer bags of pre-cooked food are my friend for bad days when I can do nothing more than microwave. On really bad days, well …

Work – has changed so much over the years. Thank goodness my job is flexible and can be adjusted to how I’m feeling, plus working with a group of friends is balm for the soul, compared to the bullying I put up with in my previous job.

Study – five minutes here, ten there. Anywhere and everywhere. Boss drooling in Screwfix? Whip book out, highlighter in hand. Boss talking for hours with the plumber/electrician/plasterer? Same. As friends, we go back a very long way and he knows I pull my weight (lol).

Do Housework – on an ‘As And When’ Basis. Cordless vacuum, ignore the dust. Keep hold of that leaflet for cleaning services for when I win the lottery.

LIve – the tricky one. I no longer travel alone. I rarely socialize. Once, twice a month – it’s a lot of effort. Home is my safe space. Meetings are planned for the morning and taxis are a godsend. It’s the afternoons and evenings that are the problem.

Handle Relapses – the worst of all worlds, especially living alone. All of the above is scaled back to The Sofa.

Hold a Pity-Party – definitely in the wee small hours. I’m plagued by MS insomnia at the moment and seem to feel every single symptom, amplified. My legs crawl with neuropathic pain, I twitch, my hands move too fast or too slow. It’s a waking nightmare.

I think when you have MS, you live with endless body-consciousness – we know exactly what we are capable of (or not) on a day-to-day basis. I still smile when someone says, ‘yeah, cool, next Thursday?

I have absolutely no idea how next Thursday is going to be …

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A Tomato Changed My Life

It really did.

A couple of years ago when I was struggling with my studies, I was lucky to have several sessions with Student Support at University, thanks to my Disabled Student’s Allowance.

I explained how overwhelmed I felt, all the reading, essay-planning, writing up. Not only that, also tackling the physical realities of life with MS; keeping on top of the laundry, the garden, the housework.

I was failing big time.

We talked it through and I realised I gave up doing things as I wanted to do the entire job or task in one go, and when I saw that I couldn’t, I threw the towel in and walked away, burying my head in the sand.

She thought about it then suggested I needed a tomato. Of course. A tomato would solve everything.

She clicked on an app in her phone, something tomato-related. It was simply a timer. So where was the wonder in that? She advised that I break tasks down into tomato-timers, like those old-fashioned kitchen ones. Set the timer for up to 25 minutes, get on with the task at hand and then stop when the timer rings. Have a break and then, when you’re ready, pick up where you left off.

Um, yeah? A humble tomato was going to sort my life out. I was pretty sceptical, but downloaded the app in good faith.

I did a bit of research. Apparently it’s a time-management technique developed by Francesco Cirillo in the 1980’s, using his kitchen timer to break down tasks. He called it the Pomodoro Technique (Italian for tomato, lol).

It’s so utterly simple and obvious, it just couldn’t work for me. I was absolutely certain. We were told the same thing in school – ‘take regular study breaks, do something fun like playing with your hamster’.

Not long after, I was up against a gruelling essay deadline, with no hope of achieving it. The laundry basket was full and the house was submerged in dust. I found my tomato and clicked on 10 minutes – easing myself in gently.

Well, long story short, it worked. Ten minutes later, the washing machine was humming away. Break. Twenty minutes writing, break. And so on. I was chalking up tomatoes like there was no tomorrow.

I still feel a bit embarrassed at how elementary it is, but it really resonated. My back-garden is in a terrible Winter-state and it scares me how much time I need to make it Spring-ready. Tomatoes.

I spent twenty minutes the other day, clearing weeds, picking up the mouse-heads (thanks, cat), and sweeping up some leaves. The immense amount of satisfaction I felt more than makes up for feeling ever so slightly silly.

Aside from studies, it helps enormously with MS. I now feel more capable, and less overwhelmed. It’s taken the burden of pressure from me.

Try a Tomato Today. It might just change your life.

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