Tag Archives: multiple sclerosis

Don’t Believe The Hype

lifeI was wandering around the supermarket yesterday and accidentally went down the Baby aisle.

With the last 18 years of bringing up The Teenager fresh in my mind since taking him to Uni, I felt a bit of a pang.

I gazed upon the rows of feeding cups, teeny tiny outfits, creams, ointments and the inevitable ‘How-To’ books.

Someone once said to me, when I was heavily pregnant and reaching for my second ice cream sundae, that babies don’t come with an instruction manual; probably the best piece of advice I’ve ever had.

In a way, having a child and being diagnosed with MS are weirdly similar, and having been through both (and survived to tell the tale), I can quite confidently say, ‘MS does not come with an instruction manual.’

In the beginning, I thought it did. Similar to being pregnant, when I was diagnosed, I was bombarded with stories (both good and bad), told to do this, told to do that, take this supplement, eat this raw bark by the light of a full moon. I read endless articles online, mostly grim, and I envisaged a similar future. The few positive stories involved wildly expensive treatment and/or jumping out of a plane for charity.

When I had The Teenager, I constantly referenced books, other people, forums, random strangers – ‘why won’t my baby stop crying?’ Whilst the deluge of advice was welcomed, it wasn’t helpful. Just like MS, every baby is unique. What worked for me (draping my baby over my arm and rocking him in tune to The Verve, a completely accidental occurrence), didn’t work for others. We found our own groove through trial and error.

MS has a virtual cornucopia of symptoms and none of us are the same, just like those tiny week-old humans. You can read as much advice as you can, you can pin your hopes on a miracle cure, just like I did to cure The Teenager’s colic. Nothing worked until I found my own solution to our own unique problem.

Being diagnosed is about finding out what works for you. Your symptoms will nudge your life in different ways, to cope with various symptoms, be it fatigue, cog fog, mobility and all the rest. When you seek advice, take what you need from it and discard the rest. It’s your life and your life with MS is not the same as anyone else’s.

I’ve found my MS groove, just as I found my Baby groove. I don’t drape myself over anyone’s arm, but I’ve re-calibrated certain aspects of my life which work for me, but which I would never foist upon anyone else.

I know when to sleep, when to do paperwork, when to shop, when to go to work. I know when to be extra careful going up or down stairs and I now know how to cope with dark days. All this works for me, but probably won’t for you.

Examine your MS and find out how to play it. It’ll take time, trial and error and blind alleys.

But you will find it.

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Join The #KickMS Movement!

AliceCan Do Multiple Sclerosis, a non-profit that provides health education programs for families with MS, launched their annual, online campaign that encourages people with MS, as well as their friends and supporters, to share how they #KickMS during September’s Can Do Month celebration.

The Can Do Month campaign honors and remembers the legacy of Can Do MS founder and Olympic ski medalist, Jimmie Heuga, on his birthday, September 22.

Jimmie pioneered the philosophy of health through exercise and nutrition, enabling those with MS to lead healthier lives.

“My father kicked MS by focusing on what he could do rather than what he could not,” says Blaze Heuga, Jimmie’s son. “Because of this, he was able to go beyond perceived limitations to live his best life with MS and empower thousands of others to do the same.”

The community can celebrate Jimmie’s can do spirit and inspire others by sharing how they live passionately through a photo, video, or mantra. #KickMS by running, painting, camping, laughing, cooking, travelling, loving, or anything you can do!

There are three easy ways to share how you #KickMS:

  • Submit your photo or video online at mscando.org/candomonth
  • Share your photo or video on the Can Do MS Facebook page using the hashtag #KickMS
  • Share your photo or video on your personal Instagram or Twitter account using the hashtag #KickMS (post must be set to public)
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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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Lots of Regrets

regretsWith just over a week to go until I take The Teenager to University, it’s a curious time.

It feels somewhat like suspended animation, this period between A levels and the big, wide world.

He has the makings of an independent life packed into three huge Ikea blue bags with more to come.

He’s here, then he’s not, dashing off to music festivals, tent and sleeping bag strapped together, only stopping to load up on fresh laundry and food that magically appears in the kitchen.

I bitterly regret the fact that MS came in to his life just as he was starting high school; as he was growing and exploring, he witnessed my world shrinking. Me, the stable, always-there parent who had criss-crossed the world several times over and had the stories to prove it. The illness was swift and brutal.

His pet hate was seeing me asleep on the sofa, so I tried my hardest to set alarms, sit bolt upright and quickly look at my scribbled lists, reminding me of who had argued with which kid, teacher’s names, which ingredients to get for the cookery lesson. My first major relapse, the one that affected my speech, didn’t help. When you can’t even string a sentence together, life is frightening.

Eventually, we laughed about it and even today, The Teenager still does a remarkably good impression of me back then – talking English with a German syntax, chucking verbs to the end of sentences, with a huge dash of nonsense thrown in.

Life became a battle of lists, remembering and alarms. I’ve mentioned it before, but finding him brushing his teeth with tears rolling down his cheeks killed me inside. He hated what MS had done and what it represented. He became used to the tiredness, the stumblings, the smashed cups, but it was still a volatile force that threatened his routine.

Of course, life for both of us would have been a lot easier, had my ex-husband stepped up to the plate. At first, he was assuredly positive. He vowed to take on more responsibility, especially as I was undergoing strong treatment at the time, Camapth, which essentially leaves you without an immune system for at least six weeks.

Reassured, I went for my first treatment. My ex had The Teenager for three days after the treatment, which lasted five days. The second time, I was on my own. The third, I made my own arrangements. Luckily, I didn’t catch an infection.

Strangely, from the moment my ex-husband said he would help out more, he ‘helped out’ a lot less. Aside from the fact that looking after your child for two days out of thirty shouldn’t be seen as ‘helping out’, it makes me chuckle ironically when I think about the amount of times I took The Teenager to town as a young child, ready to meet his dad off the train, only to have a text message saying he had a cold, or was unwell, and unable to come through. At the last minute.

Perhaps he was too occupied getting his second house in Barbados built? Quite possibly. But having had to live with my mother for four years and rent for fourteen, I wouldn’t know.

Me and The Teenager have battled MS over the last six years, for good and bad. The bad times have been horrendous, the good, glorious. He is a caring, independent, go-getting kid, despite everything thrown at him.

My only wish is that he will thrive despite MS. And, I think he will.

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Denying the Anger of Bargaining with Depression and Acceptance?

griefI don’t know about you, but the so-called ‘5 stages of grief’ annoy me.

It’s too neat, too … sanitised and packaged.

MS is anything but.

So, you get your diagnosis (of this life-altering, incurable illness) and then you seamlessly glide from the Neurology Consultant’s office onto this Grief (for your old, pre-MS life) Conveyor Belt, at the end of which you happily reach Acceptance and proceed to remain a valuable member of society? And you have the leaflets to prove it.

Yeah, ok.

This concept was devised by Elisabeth Kubler-Ross in 1969, primarily in dealing with terminally ill people, but has since permeated everything from illness to divorce to coping with not having your smartphone to hand for 24 hours while it’s being repaired.

  • Denial
  • Anger
  • Bargaining
  • Depression
  • Acceptance

In the right hands, it can be a useful tool, especially if you make clear that we can go through the stages in any direction, not necessarily in this order and we can boomerang between all of them for years. In the wrong hands, it can be yet another pressure to conform to what is deemed ‘normal’. You’ve got MS? Go through this and you’ll accept it. You’ve not accepted it? What’s wrong with you?

In my own case, I never once denied I could have MS. In fact, with a family history of it, it was my first thought when my body failed spectacularly, despite the initial diagnosis of a stroke. Anger? Self-pity, yes. In buckets. I’d like to add this to the ‘stages’.

Bargaining? Never entered my mind. I’m confused to what it actually means. If I do this, I get that result?

Depression is almost a given for any life-changing illness, so I think that goes without saying.

Acceptance? It comes and goes, probably in tandem for each relapse. Just as I think I’ve adjusted to MS, it throws a curveball.

There is no magical formula to coming to terms with MS. I wish there was. Just as MS is unique to us all, so are the ways we cope with it. So, resist that conveyor belt and be true to yourself. If you want to scream and shout, shut yourself away for days eating nothing but ice cream or you fancy painting the town red, do it.

Should you ever reach Acceptance? Have I ever climbed Everest?

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