Category Archives: Emotions

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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Jan 30 2014
22 Comments
Emotions

Catching Me When I’m Falling

depressionHours, days, weeks can go by and I’m absolutely fine.

I have a good life. MS is under control (just about) and no longer scares the living daylights out of me. I sometimes struggle to remember what life was like before it.

So why do I have moments when I plunge into a deep, black depression? Just like MS, there is no way of knowing when it will strike. I can have had the best of days, life is on track and the future is looking a shade more defined than before. Then suddenly the shutters come down, blocking out the light.

This sensation is like a relapse of the mind – a sudden, catastrophic descent into despair. I’m aware it’s happening, just like physical relapses when there is a period of disconnection before the symptoms flare up, snatching control of my body away from me.

I know people with MS are more likely to experience depression, whether due to our circumstances or from our brains playing havoc with our minds. Whatever the explanation, I need to find ways to cope with this. Perhaps it’s been around since MS started but I was unable to distinguish it from the shock of the diagnosis. Now life has reached a happier plateau, maybe I can see it in unsplendid isolation.

When it happens, I want to retreat, hide myself away and wait until it passes. But life gets in the way. I have a Teenager to raise and a house to run. I have a life.

My friends and family are unfortunately becoming used to helping me pick up the pieces. They catch me and hold onto me so I don’t fall any further. They don’t try to cheer me up or tell me how much worse it could have been. They are simply there for me.

If I knew how to fix this, I would. It’s an unwelcome visitor in the new life I’m constructing for me and my little family. It lifts as suddenly as it comes. Colours burst through once more and life is shiny, exciting and vibrant again.

I am trying. I can’t retreat, but I can sit out the storm.

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Jan 17 2014
12 Comments
Emotions

The Worst Friend Ever?

friendsI am a bad friend.

I’ve been so busy adjusting to a new life with MS that I’ve completely forgotten my friends are also adjusting to having a friend with MS.

Now the dust has settled, I’ve crawled out from my hermit-like existence and surveyed the Friendship Damage. It’s not a pretty sight.

True, some of my friends have stuck by me through thick and thin, put up with my self-pitying monologues and wiped my tears. Others have disappeared, perhaps fed up with feeling they have to preface every conversation with, ‘I know it’s nothing like what you’re going through, but…..’

I rarely go out in the evenings, and if I plan to, I more often than not have to cancel – it’s impossible to know from one day to the next how high or low my energy levels will be. So I end up even lonelier, even angrier with myself, my world shriveled into a husk of its former self.

To make myself feel better, I stockpile books and trashy magazines, record TV programmes I really don’t need to watch (Big Brother?), cook comforting foods and hug the cat even tighter. Not the best recipe for getting back into polite society, it’s a damning vicious circle. So how can I rectify this situation?

Perhaps launch a Paris-type ‘salon’ – where I host scintillating evenings chez moi whilst I recline on my sofa, introducing my dwindling band of friends to each other? Start a book club? Chez moi? Or put out a ‘yoo hoo! I’ve got energy, who fancies going out?’ call whenever I can muster the strength to apply eye make-up without looking like Alice Cooper?

This is not how I envisaged my life at 40. My world should be opening up not shutting down.

So this is an apology to all those friends I have neglected and who have left.  I know there’s nothing I can say or do to bring you back into my life, but we had fun while it lasted? To the friends who are (thank goodness) still in my life, this is a Thank You. Your support has seen me through the very worst of times. The best of times are yet to come…

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Jan 08 2014
14 Comments
Emotions

For My Children: Parenting With MS

childMy guest blogger today is a mum, psychologist, health researcher and MS survivor. She writes a brilliant blog at memsandbeingmum – take a look!

Anyone who has been diagnosed with MS knows this is big. The implications of your diagnosis for your children are huge, though in many respects are as yet unknown. Like so much about this condition, you are left with a cloud of uncertainty under which you must continue to raise your precious loves.

Like me I am sure many of you read the information and depending on what and where you read it, it will mean different things.

At the very least your kids are a lot more likely to get MS than a kid whose parent doesn’t have MS. 20 -40 times more likely than someone who doesn’t have a parent with MS. Shit.

I had unknowingly passed on my blue eyes, a love of musicals and a genetic vulnerability to MS.

I spent a lot of time feeling guilty about this. When I didn’t feel guilty I felt terrified. Then sad. Then a bit angry. Then sad. You get the idea… What I have learned this year though, and New Year seems a good time to reflect, is that remaining in the sad/angry/guilty ‘fug’ was not going to help my kids.

So. I began to think how I would want them to respond to their MS if it did become a reality for them. Just thinking like that was a pretty painful process, as you can imagine. But once I started it became quite clear.

Their response to it would undoubtedly be informed by their mother’s response to it. By the extent to which they saw their mother fight for her health. By the extent to which they saw MS dictate to her what she could and could not do. By how flaky she was. By how strong she was. I would want them to think “well, it never stopped Mum doing anything” and then bugger off and climb Kilimanjaro or something equally wonderful and exciting. Because that is what I want for my kids. The same as any other parent. I want their life to be wonderful, adventurous and exciting. Happy and healthy. Full of love. I want them to be able to ‘dare greatly’ because they feel strong and fearless. Because they know they are loved.

For them to do this, I need to live my life fearlessly. I need to be strong, happy and to love them and my life fully in spite of its challenges. I can make a practical impact on their views about food, what they eat, if they exercise and how they can live an optimally healthy life. Above all though, I do not want them to feel afraid if MS comes into their life. Into their brain. When I began to think in this way I was flooded with a new energy to face the future. It all began to seem quite simple. I am doing it all, for them.

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Jan 06 2014
16 Comments
Emotions

Banish That Guilt

guiltEvery New Year, we’re bombarded with articles telling us how to ‘eat guilt-free’ and ‘enjoy low-fat treats without the guilt’. This comes straight after the very same publications have told us to hang the guilt, it’s Christmas.

Guilt. It’s a strange old thing. I’ve been reading through all the emails I’ve had over the last year from my blog and the one theme that comes through very strongly is guilt.

You guys have shared with me your most challenging stories, the hell of limboland, the shock of diagnosis and your fears for your families and future.

And in addition, there are often the words, ‘I feel so guilty – my MS isn’t as bad as other people’s.’ Or, ‘do I have a right to feel so devastated when I’m still relatively healthy? It makes me feel guilty.’

I feel the same. My MS was pretty bad initially but my relapses have stopped since Alemtuzumab treatment (how long for, who knows?). I felt a huge sense of guilt – it still hasn’t been approved by NICE, so I was simply in the right hospital with the right neurologist at the right time. Most of us who would benefit from this treatment don’t have access to it. At one point I thought seriously about closing the blog as I didn’t feel I now had the right to talk about MS as ‘it wasn’t as bad as other people’s’.

Let’s backtrack though. How should we deal with this guilt? Refuse all disease modifying drugs so we can truly experience MS at it’s worst? Or if our symptoms are mild, should we ignore the fact we are still living with a degenerative, incurable illness and therefore deny ourselves access to support? No. MS is not a competition (although there are people out there who think it is ).

MS is individual and our life circumstances are unique to us. MS affects us all in different ways, physically, mentally, socially. Guilt, on the whole, is an unnecessary emotion. It brings nothing positive and holds us back from moving on.

This year, I am going to banish that guilt. Instead of feeling guilty, I am going to channel my energy into campaigning and raising the profile of MS. In 2012 when I started this blog, people from 31 countries had read it. In 2013 it was 108 countries. This blog might just be a drop in the ocean, but in my own little way I hope I can make a difference.

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