Tag Archives: relapse

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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With A Little Help From My Friends …

trashNot only has this latest relapse rocked my working world, it’s made me appreciate the smaller things in life.

I’ve snaffled some cut-down branches from one job to make Easter branches and have rescued some spare wood from another, with a view, at some point, to crafting  hollowed-out candle-sized logs …

I was out at 6am this morning, hanging up washing. Relapse Tick.

I replied to some emails. Another Relapse Tick.

I made three coffees for myself. Relapse Tick again.

And that’s it.

This whole time, through this hideous relapse, I have been alone. And then it hit me. I no longer have friends who will just pop over. I’ve isolated every single one of them.

I scanned my contacts list. Some were in a relationship and had found their happy MS medium, and I am thrilled for them. Some had large families and a whole lot of support. Some were suspicious of a single MSer. And some had no idea I needed them.

Had I run out of MS favours? Am I now so used to surviving on my own that I have become the person I always feared I would be – the Single Female with a Cat?

In that way, I certainly do tick all the boxes. I talk to her (The Cat). I judge her moods and respond accordingly, which is rather sad.

But back to the bigger issue – I have a wide circle of fantastic friends whom I love and adore yet I miss having friends who are there, no matter what. I think I’m one of those. Most of my friends have had various crises over the years and I’m there as soon as they put the phone down. I do my utmost to be present, in whatever capacity they need me.

Last week was a shock. Have I got so used to solitude that this is now my New Normal?  Am I now condemned to talking to the laurel bush in my backyard?

I miss my friends, but more the point, I realise I have not been the best of friends.

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Commiserations and Celebrations …

listeningThis post is a very big thank you to everyone.

I’ve been going through my own personal relapse hell these last few months and it’s thanks to you guys for keeping me sane; here and on Twitter.

Meeting with my MS nurse yesterday just showed me how important it is to be listened to, both by the MS professionals and my MS peers.

You haven’t shirked from my odd symptoms, you’ve sympathised with my sofa-bound enforcement. You’ve cheered me up and empathised when times were hard.

In a way, I’ve made sense of this relapse thanks to you. Each post I’ve written during this time has given me the most insightful comments, a lot of which I took to yesterday’s appointment.

MS for me is isolating and lonely. Get the violins out, but there is no Significant Other. No one to pick up the pieces, to cook dinner or flick a duster around. So the camaraderie I gain from you means the absolute world to me.

The knowledge that no one has to go through a relapse alone is empowering and comforting.

I hope you all know just how much this means to me.

Thank you.

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