Tag Archives: diagnosis

For The Last Time….

The TeenagerMany moons ago when I held my colicky, screaming baby in my arms, a visitor smiled indulgently at me, took another sip of their tea and said, ‘Ahhh, make the most of it, they grow up so fast.’

I glared at them through glazed and dull eyes. Oh really. Infinity stretched ahead of me, filled with nappies, screaming, cabbage leaves (don’t ask) and snatched sleep.

Fourteen years down the line, I now know what they mean. The years whizzed by. I visited a five-day old baby last week and was just about to say, ‘Ahh, make the most of it….’ but I held my tongue. Instead, I stared in awe at the tiny bundle, stunned that The Teenager had once been that size.

I remember all the firsts. The first step (far, far too soon), the first word (‘food’), the first day at nursery, at primary, at secondary. The first time he stayed over at a friend’s house. The first time he made a lego kit by himself.

The sadness is, I never knew when the endings would be. The last time he held my hand crossing the road, or the last time he wanted a colouring-in book. We don’t know until time passes and we realise they took place some time ago.

Excuse me for being a touch maudlin. I guess I’m just a bit angry that a lot of  ‘last times’ took place during the turmoil of the MS diagnosis. Whether I liked it or not, The Teenager had to come to terms with a parent who has a long-term illness and with his dad living 140 miles away.

Don’t get me wrong, I never put an unacceptable responsibility on too-young shoulders. I strove to maintain our normal routine, even when it was beyond-exhausting. But inevitably life changed, and so suddenly. Gone was the parent with boundless energy, who would go on long day trips, packing the car up and heading off. Gone was the spontaneity, the feeling that yeah, we can do that, why not?

Instead, life was filled with, ‘not now’, ‘maybe tomorrow’. I’ve never lost sight of him though. He is central in everything I do, hence the Campath treatment. Who cares about the potential side effects when it can keep me on my feet?

Perhaps instead of thinking remorsefully about the ‘last times’, I should concentrate on the new experiences The Teenager has. The new ‘firsts’. First razor, first girlfriend, first rain-sodden festival he goes to. Hang on, did I just say first girlfriend? Hmmm…..

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My MS’s First Birthday

Carly's BlogCarly is my guest blogger today – she experienced her first MS symptom at just 17 years old and was finally diagnosed at 26. She has a wonderfully positive outlook on life. Have a read, she’s inspiring:

My MS’s first birthday, 4/02/14 (although like the Queen, it has two).

I always thought I was a bit odd. Things would happen, but I didn’t feel confident telling people, and anyway, the ‘things’ would go away eventually.

I was 17 when I had my first bout of Optic Neuritis, and I felt confident that losing the sight in one eye for 6 weeks was worth mentioning. After several visits to my GP and the opticians, it was put down to a migraine, and as I was currently studying for my A-levels, it made sense that it could be stress induced. Well, made sense to other people, unbeknown to them I wasn’t keen on education and spent most of my time playing pool in the pub near school, or doing extra shifts at work.

Anyhow, that’s not to be recommended. It was a couple of years later I had lhermitte’s sign and transverse myelitis, but this was put down to trapped nerves. And I was cool with this, and that’s how my life went until 15 months ago, when aged 26, my body just gave up on me. A couple of nights in hospital, an MRI and an LP, and I had a provisional label.

MS. That sounded pretty serious. Like many people, when I thought of MS, I pictured wheelchairs, walking sticks, and older people. I worked 60 hours a week, rode a motorbike, travelled, drove 30,000 miles a year, and walked my dog twice a day. However a bit of time on the internet, and I soon realised what MS was, what it did, how it manifested its self, and that I most certainly had it.

When I finally saw my neurologist two months later, on 4th Feb 2013, I was ready for the diagnosis, and left the hospital feeling lighter than I had in ages. This didn’t last, I was soon back on the rollercoaster of emotions, but people were there for me; my MS Nurse, MS Society forums and help lines and I won that battle. I know I’ll never win the war, but that’s OK

My nurse came to see me today (though I think she really came to see Ollie, my dog). We got on to my emotional/physiological wellbeing, and I can honestly say I am the happiest I have ever been. I work 40ish hours a week, the motorbike is being sold (but that’s due to a whiplash injury), I travel, drive 20,000 miles a year and walk my dog twice a day.

Last year, pre big relapse I cycled from London to Brighton. I know I am lucky, I’m still very able bodied, but I’ve also got a new outlook on life. I’m grateful for what I’ve got. I have days where I simply cannot do anything, when I get tired I drag my left leg and dribble (yup, still single!), I struggle getting my words out, forget what I’m saying and often what I’m doing. My left leg is currently on fire and the often visited toilet has relocated to the top of Mount Everest.

But, I have wonderful family, a job (and employer) I love, the most handsome dog in the world, and a small, but perfectly formed group of friends, and I intend to enjoy it for what it is, and take each day as it comes. There is that saying, ‘life is too short’. For me, life as I know it is short, but it is still life, and for that I am grateful.

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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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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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Good Grief

Cardiff-20131102-00293I think I’ve finally come to terms with having MS in my life.

It’s been a long grieving process, a period of mourning what I have lost and what will never be.

But through this grief, I’m now more aware of what is good in my life, and I’ve discovered previously-untapped inner strength. So how well did I manage the classic five stages of grief?

Denial – This. Cannot. Be. Happening. I spent a long time with this thought, lying awake night after night, gripped by an unfathomable darkness, terrified of stepping into the unknown. It was an unreal situation and I blundered through it, denial far easier than facing up to very real fears.

Anger – I had this in bucketloads, plus an unhealthy dollop of self-pity. I was angry beyond belief. Just when my life was opening up again and long-awaited opportunities were within my reach, they were going to be snatched away? Seriously?

Bargaining – I didn’t really spend any time at this stage. I knew deep down that there would be no bargaining. Rather than try to exercise more or incorporate a healthier diet in an attempt to avoid the inevitable, I veered off in the opposite direction, thinking, ‘what does it matter, the damage is already done’. I self-medicated with chocolate, wine and comfort food.

Depression – This was the longest, most soul-destroying stage. I withdrew from the world, helped along by my symptoms speeding up the process. Home became my sanctuary and my prison in equal measure. Life was interminably bleak, the days long and dark, the nights longer. And darker.

Acceptance – After the awful depression, I had a choice. Either to go under or create a new way of living. I was fed up waking up every day under a cloud of misery. Rather than focus on what was lost, I looked at what I could do. What had this whole process taught me? After facing a vortex of fear and terror, the only way to look was up. The alternative was unthinkable.

Grieving allowed me to survive this change in my life and come out more positive and stronger within myself. Change comes in many guises, mine just happened to be MS. It shook my life to its foundations, but the resulting re-building is more secure and solid than before.

And the best thing? I had overwhelming support support from you, through this blog. Thank you.

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