Tag Archives: symptoms

Jul 11 2016
12 Comments
Symptoms and Treatment

Been there, done that …

gutterAs I was lying sprawled on the gravel at work, still holding two (thankfully empty) coffee cups, I promised myself, ‘this time, it’ll be different.’

Rewind a day or so and the first inkling something wasn’t quite right came when I floated away.

I hate that feeling. I’m here, but not quite. It’s my relapse calling-card.

My hands played up, a grabbing-arcade-machine-gone-awol. I misjudged my steps, I tripped countless times and scuffed my brand new shoes. I was exhausted beyond belief. On Saturday, I literally could not get up off the sofa from 2pm til 9pm, despite all my efforts.

I was gripped by fear – fear that The Teenager would notice, fear that I couldn’t function, fear that I was immobile and couldn’t do a thing about it. So I lay there, invisible threads of absolute fatigue snapping into place all around me.

Late that evening, I finally managed to crawl into bed and collapsed.

Relapses, a spike in symptoms, an exacerbation, a blip, whatever it is when it comes to MS, whatever it’s termed, it’s dire and we don’t always need an MRI to prove it, although in my case they usually do.

I had a pocket of energy after work the other day, so ploughed my way through three lots of laundry, laid bark in the garden and cooked up a massive batch of chicken. I cleaned the kitchen, vacuumed the house, fed the cat, placed a food order, caught up with paperwork. I was dying inside but there was no alternative. After that, I collapsed.

I’ve learned to get one step ahead of a relapse. I hate being inactive on the sofa ( I hate my sofa so much it’s unreal). But I know it has to happen, no matter how much it kills me. I think if I can do everything possible, I will guarantee I’ll be able cope if something even worse happens in the next few days. It’s the ‘Single Parent With MS’ Dilemma. But at least the laundry’s done, and the t-shirt that makes The Teenager’s muscles really stand out is fresh and ready to wear. It’s priorities.

Back to the gravel. I lay stunned. The boss shouted down to me from the roof he was working from. My body had taken a huge whack and the pain was immense.

I had to get up. And you know what? I did. And for that I will be forever grateful as not all of us with MS could say that. So, as long as I’m able, I will treat relapses with the contempt they deserve.

Been there, done that …

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May 23 2016
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Emotions

Happy 28th Birthday To Me!

birthdayI was diagnosed with MS four years ago this week.

If you’re anything like me, and each MS-diagnosed year feels like a dog year, then that makes 28 years I’ve had to get used to this.

And, whoah, do I feel every single one of those years.

Four years? Is that all?

But, as with any birthday, there is a lot to celebrate. Challenges? I’ve had a few. I’m still here. Bad times? Many, and I’m still here. Horrendous, vile, despicable times? Too many to mention but they are behind me now. This week is about having a look over how far I’ve come, not just about the hurdles I had to clamber over to get here.

The Teenager is thriving; he’s just finished his last exam, has actually hoovered his entire bedroom and emptied his bin and even decided to start cooking for us both a couple of nights a week, in preparation for university life. First up? Beans on toast. Yum. It’s the thought that counts.

Don’t tell the boss, but I love my job. The alternating work sites so I’m never bored, the camaraderie, the fresh air. I adore it. I can pick and choose my hours so medical appointments are never a problem. There’s no tutting or eye-rolling when I take a bit of time out to shake off the Uthoff’s or get to grips with foot drop.

I’ve just entered the dissertation stage of my master’s degree. It’s flown by and here I am. Completely unprepared and uncoached in academia-speak, but I will try my hardest. And when I hand over my hard-backed version to my tutor in twenty years, I will be beaming from ear to ear.

And last but not least, I have been through a major life-upheaval with my mum being ill. I found strength I never knew I had and thanks to my fabulous friends and family, I have navigated the ups and downs that a serious illness brings, only this time I am at the other side of it.

The downsides? I’m still working on my spontaneity – I can’t wait to say, ‘yeah, great, it’s 7pm, it’s a beautiful evening, of course I’ll join you’, or, ‘ok, macrame wasn’t quite what I had in mind for an exciting hobby, but, sure, I’ll give it a go.’

Or the usual gremlins – appearing drunk, tripping/falling over, wonky speech, dodgy hands, etc.

Yet for all that, I can’t quite believe how far I’ve come since the Bad Old Days of Deep Sorrow and Wailing. I think I am a kinder, more compassionate person and I appreciate every single positive thing in my life beyond measure.

MS might have laid down a challenge, but I challenged it right back.

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Feb 11 2014
20 Comments
Emotions

Harnessing The Vortex

vortexVortex: a place or situation regarded as drawing into its center all that surrounds it.

My previous post provoked an interesting discussion.

Is the mind, and how it reacts, our most powerful and potentially damaging MS symptom?

Thinking about Viktor Frankl’s book ‘Man’s Search For Meaning’, perhaps it is. Suffering the most appalling, inhumane abuse in a concentration camp during World War II, Frankl chronicled his experiences which led him to discover the importance of finding meaning in all forms of existence, even the most sordid ones, and so a reason to continue living.

He noted that fellow prisoners who concentrated on what they had lost fared the worst; the ones who concentrated on the here and now, despite the horrors of their daily existence, survived. Even in the most absurd, painful, and dehumanized situation, life has potential meaning.

I am using an extreme example here for a reason. Our ‘suffering’ is relative to our life situation. MS is for most of us disruptive, unplanned and unwelcome. It can be a vortex of fear and misery. Our minds gallop away with us, far beyond the actual physical symptoms we may be experiencing.

Hence my blind panic when a new symptom reared it’s head last week. Rather than placing it in context, my mind immediately concentrated on loss. On suffering. On the ‘what if’ scenario. I made myself miserable. My mind’s interpretation of this symptom was far more damaging than the symptom itself.

Perhaps, rather than concentrating on each new or return of old symptoms (and the fear that accompanies them), we should be aware that by harnessing our minds, our vortex of emotions, we can gather ourselves in and experience them for what they are.

I have a lot of physical symptoms. And by focusing on them alone, I have ignored how I have reacted to them. No one talks about the MS Mind as a symptom, apart from informing us that MS can cause depression. It is a subsidiary to MS. Yet, if we can strengthen our mind impulses and our tendency to imagine the worst case scenario, could we live more peaceably with MS?

We cannot change the cards life has dealt us. But one thing I am learning is that I can change my perspective. Strengthen the mind and we can cope with anything.

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Feb 09 2014
14 Comments
Symptoms and Treatment

Dodging The Bullet

dodging the bulletWell it seems the draggy, schleppy foot is here to stay for a little while longer.

It’s surprising how quickly I’ve got used to it, the exaggerated lifting of the offending foot. Apart from The Teenager mimicking the Kennedy Space Center voice – ‘One giant leap for woman….’

Anyway, I’ve been thinking. It could be an old symptom coming back in a sneaky, evolved form, or it could be a new symptom. I could tie myself up in knots about it. Like most of us with MS, I spend my days inwardly saying, ‘there goes the foot drop, oh, that’ll be the heat intolerance and yup, some loss of balance for good measure.’ And, ‘can I go to sleep now?’

Maybe I spend so much time in fear of a new symptom, a relapse, a further loss, that I forget to concentrate on the here and now. The MS symptoms will go their own way regardless. The way my mind goes is of my own choosing. Over that, at least, I have a modicum of control.

So maybe I should stop worrying about dodging the bullet. If it happens, it happens. I was utterly paralysed by fear last week. And what good did it do me? I came down with a stomach bug.

In a way, it was a relief to concentrate on a non-MS symptom for once. All thoughts of MS were pushed out my mind as I put my much-diminished energy in to becoming better. As quickly as possible. I crawled back into bed, the monotony of it only relieved by my friend delivering me all the Saturday newspapers, a McDonalds burger and Coke (I know, I know, but it helped) and a big bag of chocolate buttons.

If this last week has taught me anything at all, it is that MS is part of who I am. The more I try to side-swerve and ignore what is happening, the more I suffer when a symptom comes to the fore. It’s not about giving in, but accepting that it happens.

The meltdown I went through was probably far worse than the symptom itself. And what does that show me? It is my mind, not my body that is out of control. A sobering thought.

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Nov 03 2013
14 Comments
Blogging

I Choose To Laugh

Cathy ChesterCathy Chester has written a guest post on behalf of Healthline.  She’s a writer and health advocate, and writes about living with a disability during midlife at An Empowered Spirit.

The first time “it” happened I was walking as fast as I could through the Port Authority Bus Terminal in New York City.  Everyone walks very fast in Manhattan, and when you’re trying to catch a bus, they walk even faster.

They do this without looking anyone squarely in the eye. There must be an unwritten law that you aren’t allowed to look anyone in the eye if you live in the Northeastern United States.

Trying to catch my bus, I noticed my body felt very “uneven.” I would take one step and my foot would touch the ground; the next step it would not.

What was up with that?

I looked down to see I had one shoe on.  What?  Yes, one shoe off, one shoe on…(I won’t continue with that.)

I looked in back of me, and the fast walkers of Manhattan were kicking my shoe out of their way to catch their bus.

My foot was so numb I never noticed my shoe had come off.

The second time “it” happened was the following year.  I was going out to dinner with some friends to a bar/restaurant.  After waiting for our table at the bar (and one glass of wine later) we were called to our table.  Following the waiter up two short steps, I fell down. Plop.  My legs had given out.

“How many drinks did you have?” the waiter asked, smiling like I was a cheap drunk.

I could have said a lot of things, but I blurted out, “Only one.”

Not exactly clever.

The “it” I am talking about are those things that happen to us while living with Multiple Sclerosis.  Those humiliating and embarrassing day-to-day activities that happen if we fall, trip or collapse during the treadmill of our lives.  They can happen in an instant or over time, but when they happen, how will we handle it?

After 26 years of living with MS, my response to that question is to handle it with grace and humor.  After all, what are our choices?  We can either cry or laugh.

I choose to laugh.

Those of us diagnosed with an autoimmune disease end up listening to family, friends, doctors, therapists, social media and countless other well-meaning people trying to help us manage our disease.  People, in general, are more educated about MS today than they were 26 years ago.

But we still have a long way to go.

I hope we handle their education with grace and humor, while letting them know that MS is not something to laugh at, but we can still laugh at ourselves.

Today I would have told those people kicking my shoe around Port Authority that I have MS, so if it happens again they will think twice and be kind enough to tell someone they lost their shoe.

Today I would have told the waiter at the restaurant about MS, so if it happens again he would use more tact, and show more compassion.

And both times, I will continue to laugh inwardly and, outwardly, helping to spread MS awareness.

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