Tag Archives: relapse

Jun 15 2018
6 Comments
Daily Life

Fighting Fat, Chasing Chips …

I was ‘large’ before MS, but comfortably so, I thought.

I’m tall, and carried my weight well.

I could still browse normal stores, pick out a top or two to try on in a changing room without feeling too … fat.

Then came the nerve meds, steroids, comfort eating. MS, basically.

My weight crept up and up and up. And up some more. And then it leapt considerably and it just wasn’t funny any more.

Most of my clothes were bagged and put away in a cupboard. I shunned mirrors and didn’t recognise myself in photos. I had a teeny-tiny head on an enormous body. It wasn’t me. And if it wasn’t me, who was it?

I read all the ‘we can cure MS through diet’ books. I looked through the miracle websites; I should cut out carbs, ban sugar.

That’s all well and good, but perhaps finding the reasons for my food choices could be more important than following a trending diet plan without digging more deeply?

Unpicking those choices with a therapist over the last two years has been invaluable for me.

I’m in the middle of being diagnosed with a fairly serious mental health illness. But the incredible thing is, I’ll be diagnosed officially with it when I’m almost through the worst and heading towards needing little, if no intervention.

I’ve thought long and hard about writing this post, but it is important to me and hopefully to many other people with MS, who are also struggling with their mental health.

It’s very easy to concentrate solely on our physical symptoms, frightening enough in themselves – the nerve pain, the balance issues, the complete and utter dysfunction of our once ‘working’ bodies.

But what about our minds? Our mental health? I had so many emotional issues I didn’t feel able to discuss seven years ago when MS first started. Now, after unpicking them with my counsellor, I am able to work out patterns, understand trigger points and hopefully – fingers crossed – have a plan of action to be able to deal with the ups and downs of living with MS.

So now, I have started to cut out carbs, my go-to comfort. And sugar, my absolute go-to comfort.

I won’t lie, it’s tough, cutting my daily intake of sweetness and soothing comfort, But, by facing up to my latent demons and the ever-lurking shadows of the past, I hope to shed my carb-fest weight and reveal the real me.

Can I do it?

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Sep 08 2017
10 Comments
Symptoms and Treatment

Being Ill – Not For The Faint-Hearted

fabWhat’s it this time?

A relapse? An ‘exacerbation of symptoms’? Or just the usual?

Whatever your MS nurse, neurologist or doctor calls it, you feel pretty bad.

Worse than that, you feel dreadful. Terrible. Horrible. And everything else in between.

But wait, your colleagues and friends will make you feel better:

‘Wish I was you, would love a week off work, dossing around, watching telly.’

‘A week in bed? You serious? Eaaaaasy life.’

Yeah. When you’re in fairly good health, a week off must sound like bliss. When you’re truly ill, it’s evil, and no doubt you’re wishing you’re well enough to be in work as anything is preferable to how awful you’re feeling right now.

What most people don’t realise is, being ill is extremely hard work. It’s certainly not a cushy number; my last relapse showed this only too well. I was ill. All I could do was lie on the sofa. Nice? No. The nerve pain gnawed away at my legs while the fatigue bashed my head in. Everything hurt. I couldn’t read, I couldn’t concentrate. All I could do was … lie there. Being ill.

And all the while, rushing through my head was a stream of things I couldn’t do, but had to – the laundry, the cleaning, the shopping and cooking a basic meal for myself. The latter tortured me. I could taste the boiled egg, but it took me over three hours to get up up and do it (I have one of those six-egg electric egg boilers – couldn’t find the energy to turn it on).

To be frank, I can be as guilty as the next person. I never really understood people who had the flu, until the one and only time I had it, two years ago. I literally, quite literally, could not get out of bed. It was a relapse x 10. And extremely frightening, especially as I was the only responsible adult in the house. In some ways, the mental anguish was worse than the aching limbs and complete inability to sit upright.

Someone once said to me, quite soon after my diagnosis, that you have to be strong to cope with MS, and, boy, they weren’t wrong. If you let it, it can become a full time job. Constant pain, constant fatigue, immeasurable fear of what happens next. Plus, there’s no end-point.

You know that chic trend for ‘pop-up’ this, that and the other? Shops, stalls, cafes? For me, MS is a bit like that, except not as nice. They appear one day and are gone the week after, having cashed in their pain tokens and left.

And even when you’re Not Very Ill, there’s the constant undercurrent of symptoms, most of them invisible. Going to a Port-a-Loo six times a day when there’s eight men on a site isn’t pleasant. However, lying down on a pile of plasterboard and nodding off is, so perhaps I now look for the silver lining.

I find it bizarre, at my age, that I’m coping with an endless barrage of symptoms, day in, day out, and have been doing for the last six years. I should be thinking of other things now that The Teenager is off to Uni next week – taking up Salsa (lol), learning how to make sushi, immersing myself in Yoga for Complete and Utter Beginners.

Next time someone says how cushy it is to be ill, take my advice.

Ignore them.

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Jun 03 2017
6 Comments
Symptoms and Treatment

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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Apr 27 2017
8 Comments
Symptoms and Treatment

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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Apr 26 2017
18 Comments
Symptoms and Treatment

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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