Category Archives: Symptoms and Treatment

All Clear On The Campath Front

all clearIf you’ve had a relapse, such as my epic one earlier this year, you almost want it to prove itself.

Mind you, that proof would take the form of lesions on the brain, which is definitely not a good thing.

So I was torn when I had my last MRI. Having just re-entered the real world after being locked in an abysmal cycle of worsening symptoms for over five months, I was enjoying my freedom.

The thought of having to factor in another course of Campath in amongst getting The Teenager University-ready was something my brain just couldn’t compute.

On the other hand, if the scan showed up nothing, what on earth was going on? Is this it? Can I expect more of these epic MS smacks-around-the-face? Would this be my life from now on?

Anyway, the excellent news is, my scan is clear, and that is all that matters. No disease progression. No need for further treatment at this stage. My brain is just fine.

After saying, ‘thank you, thank you, OMG, thank you’ over and over again to my MS nurse who imparted this wondrous news, I then asked, ‘erm, so what do I do now?’

Well, nothing. It’s a kind of waiting game. The relapses I’m experiencing are normal for my type of MS. And there you have it, MS in a nutshell. You just don’t know. You’ll never know, from one day to the next, how it’s going to hit you. Every day is a lucky-dip.

Take this week. On Monday, I was awake. Fully awake. No yawns, not much pain, minimal brain fog. Apart from the usual twinges and walking in to walls, I was fine. On Tuesday, the nerves in my legs were on fire. I fell asleep after work and my hands went numb with alarming frequency. I tripped over in the kitchen, scattering chopped rosemary all over the floor (can’t blame the cat this time).

I’m beyond relieved I don’t need treatment this year; every day I wake up and it’s like remembering the glorious news all over again. The absolute relief is immense. Yet the fear hasn’t receded.

But hey, this is life. As The Teenager quoted to me earlier from John Lennon, as we were waiting for him to have his meningitis jab, ‘Everything will be okay in the end. If it’s not okay, it’s not the end’.

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OMG … MRI …

mriI had an MRI scan today to throw some light on my recent relapse.

I know the score now – I leave the watch and earrings at home, wear a sports bra (no metal clips), don a tatty old cashmere sweater (usually freezing in the tube) and took my best friend (where would I be without her?).

At the hospital, I mainlined caffeine before we made our way to the clinic.

Once there, I answered all the questions, disclosed my weight (state secret), confirmed I wasn’t pregnant (hah!), accepted the ear-plugs and laid down, squeezing my eyes tightly shut.

Ho hum. I was whooshed into the tube and had that momentary burst of panic, which I knew if I let it grow, would condemn me to squeezing the emergency button and calling a halt to the whole thing. Claustrophobia + MRI = gritted teeth and the promise of looking round the hospital gift shops if I make it through.

After a while of zoning out, working out a shopping list in my mind, I was slid back out and injected with a dye to light up any active lesions in my brain. Then I was popped back in again. More banging sounds, which I attempted to ignore and concentrate on whether I needed one or two courgettes and had I run out of loo roll?

I was slid back out yet again, fully baked, and rolled off the plastic tray I’d been lying on, relieved it was all over. Except it wasn’t. Someone lifted a huge plastic square over to me, like a massive head brace thing with bolt bits on it. A different head rest was put in to place. Ah, they were preparing for the next patient?

Nope. For the first time ever, my neck was to have it’s very own special MRI. It was terrifying. My head was locked in to place, like some Medieval form of torture and I was slid yet again back in to the tube.

This time it was even weirder. Far from being cold, I felt as if I was being cooked. The heat blossomed all around me and then a pressure started on my head, like a gentle crushing, but crushing nonetheless. Hmm. The panic took root and I frantically tried to recall the courgettes. Three?

Over the intercom, I dimly heard ‘only two more scans to go’, listening to a brand new MRI theme tune. I swear it sounded like some bloke saying, ‘dah, dah, dah’ to a backbeat of drums.

Finally, eventually, I was slid out for the final time. I was shaking as I popped the earplugs in the bin and fell against the wall as I tried to put my boots back on. I staggered back to my friend, went to the loo (pesky coffee) and set off for the shops.

My heart was beating so fast, I couldn’t decide whether to buy a coaster with ‘Live, Love, Laugh!’ on it or a pencil with a tiny windmill topper. I went home, images of courgettes following me like a teasing hallucination.

I hate courgettes.

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You Won’t Know If I Don’t Tell You …

BBCI took part in filming for BBC Wales last week.

I’d responded to their question, ‘What Would You Do If You Were Prime Minister?’, as part of their #MyManifesto2017 campaign. How could I resist?

They contacted me, we set up a date and they popped into the office for a chat, cameras in tow.

We discussed a whole range of issues, including disability rights, discrimination, PIP and benefit cuts.

One issue that came up again and again was describing MS at its worst. Having come out of an epic relapse, my longest ever (February to May), it was surprisingly hard to convey just why I looked so weirdly happy and brimming with optimism.

Between takes, I thought about this. Leaving a relapse is like being let out of jail. You’re handed back everything you signed over when you entered this awful state; perhaps not a watch and wallet in a plastic bag, but your innate energy, curiosity, vibrancy.

I found myself constantly saying, ‘no one sees me at my worst’. And you know, they don’t. As the only adult in my household, I shield The Teenager from the majority of a relapse’s effects. I can also work from home, alone. Or in the office, alone. During my endless days off work, I kept myself to myself. Most people were surprised to hear I’d even been through a relapse. It’s because they don’t see me. And I don’t tell them.

Pride? Obstinacy? Or am I just becoming a brilliant MS actress? I’ve had a few emails from you guys saying you know I’m not doing great as I haven’t blogged so much. Absolutely spot on.

I really don’t know why I lock myself away. I do know that one of a relapse’s effects is survival – you just have to get through it, so you put your head down, grit your teeth and keep on keeping on, as much as possible. This doesn’t leave much room for societal niceties – I don’t tend to have friends over, I don’t meet up with friends (my Excuse Bank is extensive) and I don’t do anything except putting what’s left of my diminished energy into getting through a horrendous time, with no idea how long it will last.

Relapses are reflective – you only know how bad they are when you start coming out of one. Part of me wishes the BBC could film me during a relapse but I also know that I wouldn’t have picked up my phone and sent that initial tweet if I was still in Deepest Darkest Relapse Dungeon.

So hopefully I can harness my rising energy levels for something positive. My short film will go live next week, on the telly, radio and internet (I know! Me – in all my glory), and they said¬†they will Photoshop me down to a size 8 and make my chubby cheeks a bit more pointy. (I fear they are joking … )

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The Relapse Silver Lining …

brightI’ve had to think hard and dig deep, but there really is an upside to coming out of an MS relapse.

Bear with …

I’ve looked over my previous blog posts and, wow, I’ve written some fairly depressing stuff, but I guess that’s the point of blogs – honesty and real life, warts and all.

I’m not one for sugar-coating MS, as regular readers will know. There’s highs and there’s lows. Lots of them.

So now I’m emerging from this MS relapse hibernation I mentioned previously, it’s time to move on and concentrate on the positive.

I don’t know about you guys, but coming out of a relapse is like slowly waking up to the world again and all it can offer. Dullness is replaced with bright, blinding colours. Clarity snaps through my mind like a tornado. The impossible becomes ever more possible.

It’s so difficult to explain. For months, life has been lived in a sludgy, treacle-like substance. Putting one foot in front of the other has been the sole aim. Sure, to anyone else, I’m holding it all together. Only I know how disastrously things are collapsing inside.

Fear. That’s the worst symptom of a relapse. Fear of MS progression, fear of treatment failure, fear of the future. And above all, where do I fit in to this world where everything is a battle – parenthood, work, studying, being a capable member of society?

I might feel like I have achieved nothing during the relapse, but in hindsight I have. I’m still taking part in research projects, still attending MS meetings, still contributing my voice. I can do a lot with a laptop, despite the Wifi being a bit wonky when I’m lying down on the sofa.

I stood outside my back door yesterday and looked at the plants I had nurtured since seedlings. Achievement? Absolutely. I heard The Teenager singing in the shower; a confidant, blossoming young person with a bright future. Achievement? Hell, yes. My proudest and most shining example of hope over adversity. We’ve shared an incredible journey through MS together and now it is time he branches off and heads towards his dreams.

I am aspiring to be grateful for everything life throws at me. My first lesson has already happened – The Boss is picking me up at 7.15 tomorrow morning and my job is to write down lots of boring stuff.

No matter what, I will be the epitome of cool and count roof tiles and bits of wood. Just when I thought my life couldn’t get any more exciting …

 

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Could Someone Rewind This Year Please?

tiredWell.

It’s almost May and it might as well be February, as I’ve been in an MS-imposed hibernation since then. All my Grand Plans for 2017 have come to zilch.

This latest relapse has been tough and it’s taken all my diminished strength to get through it.

As always, life shrinks to the absolute bare minimum. It’s a case of getting through the day. The pain has been crippling, the fatigue all-encompassing.

As I emerge from my MS cocoon, it seems the world has moved on. I’m still wearing my Nordic sweaters and ordering ready-made hearty soups from Tesco. I’m watching dark Swedish dramas on telly and wondering where to introduce dramatic black paint into my house. In short, I’m still in Winter-mode when everyone else has dusted off their shorts and barbecues. S’not fair.

If I had the energy, I’d host a pity-party for one, just like I did way back when I was first diagnosed. It’s been an incredibly long relapse compared to the usual three-weekers.

Anyway, enough whingeing. The Teenager and The Cat have been getting on with their lives in the meantime and handily for them both, I’m pretty much always available to speak to as I loll on my sofa trying to maintain a semblance of normality. I’m a captive audience:

  • The cat enjoyed her course of steroids (it cracks me up that she was on the exact same ones as I’ve taken for relapses in the past) and her fur is growing back. Mind you, her tail looks a bit weird as it’s still fairly bald at the bottom.
  • She’s being bullied by a new cat on the block, resulting in sudden scamperings into the house, nearly giving me a heart attack.
  • Two mice have been left right outside the back door. I stepped on one of them.

As for The Teenager:

  • He pushed his way through the 1000-strong crowd on the Common outside my house to get a selfie with Jeremy Corbyn when he spoke here last Friday. Random, but true. Jeremy looks slightly bemused.
  • He has finally worked out how to use the oven; luckily the house didn’t blow up when he left the gas on overnight after cooking a couple of chicken breasts. But at least he got his protein.
  • I attended an overnight MS Society Council meeting at the weekend and said to him in a misplaced spirit of generosity, ‘why not have a couple of friends round?’ And, ‘feed the cat’. Long story short, ten hulking teenagers were squeezed into my house, my recycling bags are filled to the brim with beer cans and I’m still finding bottle tops down the sofa. The cat is alive.

Hopefully, I’m turning a relapse corner and I can start playing catch-up on the year which is passing me by in a blur of supreme inactivity. Or maybe I should throw the towel in and start writing my Christmas list …

p.s. I know there’s a spelling mistake on the picture – just too tired to correct it …

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