Monthly Archives: August 2013

Aug 22 2013
19 Comments
Blogging

Confused Dot Com

to blog or not to blogHmm. Excuse my random ramblings in this post – my last blog post threw up some extremely thought-provoking comments and I’m still working my way through them.

A couple of people were concerned that I’m blogging/thinking/worrying about MS too much perhaps and I completely understand what they mean, as I blog every two days.

Has MS dominated my life to detrimental levels? I’ve also always posted about things unconnected to MS, such as my adventures with make-up, The Teenager, my rantings against the Daily Mail, politicians, lifestyle gurus, etc.

Funnily enough, before the comments, I was wondering how I should move my blog on slightly, especially after the second lot of Campath treatment I had in July. Or is it naturally evolving anyway?

Initially, I started the blog for two reasons. First, to make sense of everything and second, to show that there is light at the end of the tunnel. It’s not all bad and some of it can be downright hysterical. Worst case scenario, if my blog bombed, at least I would have a nifty diary to show The Teenager when he was older.

So, where do I go from here? How much is MS a part of my life? Honestly, blogging has been the best form of therapy ever, and it’s thanks to comments from you guys that I can be prodded in the right direction. Blogging is public and I’ve always published every comment, no matter how much they might make me go ‘Ouch, that hurt.’ Otherwise, why blog? Why put yourself up for public scrutiny? Why not just scribble in a diary?

My MS journey has been weird and wonderful. If nothing else, I hope that people can see that it is possible to fight back against discrimination in work, that it is possible to be a single parent with MS and it is possible to get back up after being knocked down. I’m still confused. I love writing. I adore the discipline of searching for the right word, the best way to convey complicated feelings. I’m not yet sure how to change the direction of my blog.

Finally, now I have had Campath and haven’t had a relapse since last year, am I still ‘qualified’ enough to talk about MS? All I know is, blogging kept me sane through dark times. And without you guys, this wouldn’t have happened.

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Aug 20 2013
60 Comments
Blogging

Basically, MS Is Crap

ms is crapI’ve had a lot of good and a little bit of not-so-good feedback about my recent blog posts.

Some people told me in no uncertain terms, ‘Oi, you, stop joking about MS, how dare you? And are you not grateful/bowing down/prostrating yourself for all those who are fighting on your behalf, and if you aren’t, why the hell not?

Sadly, most of these comments were sent to me privately so I’m unable to share them with you.

I have never, ever joked about anybody fighting to find a cure for MS. They are all amazing people doing an incredible job. The only exception is fundraising by fire-walking. Personally, I still find it awfully strange when one of the most common symptoms of MS is heat intolerance. It just seems kind of…..bizarre?

When MS decided to strike for a second time in our family, I cried, ranted and raved and eventually picked myself back up again. I will be forever grateful for advances in medicine which allowed me to choose Campath, a choice my dad never had back in the 1970s. He was simply sent home with a walking stick and told to get on with it. He died when I was four, and the precious few memories I have of him are fragmented.

Why do I joke about MS? I think we all know MS is serious. We live with it day in, day out. So what’s wrong with a little light relief? Also, I joke about myself and my symptoms, no one else’s. That just wouldn’t be funny. Frankie Boyle, please take note. I just don’t understand people who think I should live a serious life just because I have a serious illness. Or is this yet another example of ‘disabled’ people having to conform to a rigid set of societal expectations?

I’ve cried enough over MS for now. It’s here, life has changed and I’ve changed with it. Like a lot of you, I no longer take things for granted and my life is in much sharper perspective than before. MS is a daily reminder of the fragility of life.

So, yes, MS is crap. It’s awful. Regular readers of my blog will know I address this in serious and more lighthearted posts. And I hope my little blog can bring a smile or make someone think, ‘yup, me too.’

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Aug 18 2013
26 Comments
Symptoms and Treatment

Any Time, Any Place

sleepIf they gave out medals for sleeping, I’d be top of the podium (after a quick nap).

I wake up tired, I go to bed tired. I yawn constantly. And not polite little yawns either. Massive, jaw-aching, cartoon-like yawns. ‘Am I boring you?’ is a phrase I hear an awful lot.

It’s exhausting (excuse the pun) being tired all the time. It’s a bit like MS in miniature – the feeling of being disconnected from society, in a little bubble all of my own.

Days are meticulously planned, pockets of time doled out like bargaining chips. Spontaneity is a thing of the past, or at least, I have to think about it very carefully. Which kind of defeats the object.

There is a famous spoon theory, to explain chronic tiredness to other people, about how you only have a set amount of energy in one day. I prefer to think of the Mallet Theory. Say you start the day with ten mallets. You have to give one up every time you feel you’ve been coshed over the head by MS fatigue. If you’ve got any left at the end of the day, it’s been a good one.

The thing about MS fatigue, like most other MS symptoms, is that it can be managed, not cured. I have loads of strategies – a handy duvet tucked behind the sofa, rushing around like a wild woman when I suddenly find myself with some precious energy, preparing food ready for later, a command table set up next to my sofa with everything to hand. In fact, it’s very similar to when The Teenager was a screaming cute little baby. The midwife would chastise me, ‘now dear, mummy must sleep when baby does, mummy must be guided by baby, baby won’t mind if you haven’t managed to dust the house.’ Baby won’t mind if I shut the door on you, then.

I’d like to say I feel better with all this sleep. I don’t. It’s not a luxury, it’s a necessity. It barely brings me back up to my baseline energy levels, and even that’s way below par. But as with everything else that MS throws at me, I’ve adapted to it. It’s kind of normal now. Only problem is, I keep running out of mallets. …

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Aug 16 2013
52 Comments
My Ramblings

Fight Back Or Be Damned

fight back or be damnedOne of my pet hates is people with chronic illnesses being urged to ‘fight back’ by others who have no idea what they’re talking about.

Am I supposed to feel better when someone looks at me with sad eyes, grasps my hand and tells me, ‘oh, you’re so brave, I just know you can fight this thing.’

Perhaps the media is partly to blame, when every third-rate ‘celebrity’ who is diagnosed with anything is featured in trashy magazines claiming they will fight back, not let it beat them, blah, blah, blah. Ironically, they usually end their not-so-exclusive interview with a coy plea for privacy.

How exactly am I supposed to fight back against MS? It isn’t going to go away. Oh sure, I could pay thousands for quack cures, immerse myself in healing waters, start meditating, follow a Beat MS Diet, howl at the moon. And yes, I probably would feel slightly better, just as anyone without MS would also feel slightly better following a strict, healthy regime. Isn’t it better for us to adapt to our new lives with MS rather than fighting the unfightable? It’s not about giving in to it, it’s about getting on with it.

There is a creeping sense of a hidden agenda embedded within this call to fight back. Anyone with an illness must resist being ‘different’ at all costs. We must strive to regain our ‘normality’, that which is acceptable to mainstream society. We must fight back against anything that marks us as being outside the socially acceptable norm and if we appear not to be fighting back, then we’re obviously not trying hard enough. How often do we hear, ‘Oh, she fought a brave battle’ or ‘she just gave up the fight.’

This kind of pressure only makes life with MS more difficult than it already is. The only thing I’m fighting back against is the discrimination that comes with having MS. Being sacked from work because of it. Struggling to find a new job because of it. The constant blank, disbelieving faces when I try and fail to describe overwhelming fatigue and the reality of living with a mostly invisible illness.

In the meantime, I’m sticking with Jack Osbourne’s philosophy – Adapt and Overcome. Interestingly, it’s his family who talk about fighting back, not him. Anyone who wants to make me feel guilty for not fighting back hard enough, stumble for a week in my shoes, then come and talk to me.

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Aug 14 2013
8 Comments
Daily Life

Business As Usual…

made in 1973Well there goes another birthday and I have now well and truly entered my fifth decade.

The candles on my cake took an embarrassingly long time  to blow out even with the help of The Teenager, fire extinguisher at the ready just in case. I was half-expecting the Birthday Fairy to present me with wisdom and maturity befitting my advanced years, but sadly it seems I’m off her list for now.

The Teenager had promised to set his alarm for 6.30 and make me breakfast in bed (probably a pot of yoghurt and a glass of milk – he seems incapable of working the toaster or kettle), but by 8 I shook him awake, starving and eager to open my birthday cards. My mantlepiece is now festooned with helpful reminders of my age, just in case MS cog fog made me forget.

As my official Big Birthday Bash isn’t till the end of the month, I spent the evening indulging myself in a 5-step ‘youth-boosting’ home facial. This included exfoliation, a time reversal face mask, firming youth serum, a lift and brighten eye complex (complex? Huh?) and finally a-stop-the clock moisturiser. The instructions suggested that ‘for the ultimate spa experience, light a fragranced candle and have some gentle music playing’. I didn’t have a scented candle, so I sprayed lavender air freshener around and instead of music, The Teenager was watching the Ashes highlights up loud.

After I had applied the final blob of moisturiser, I rushed to the mirror, hoping to see all 58 signs of ageing erased and a 20-year old version of myself staring back at me. Disappointment is below an understatement. Instead of baby-soft skin, I was greeted with a bright red face punctuated by two dots where my eyes normally are. Sigh. To help me over the shock, I had a third slice of birthday cake and a(nother) cheeky glass of wine.

I always expect significant birthdays to be like New Year’s Eve. At the stroke of midnight, I will be magically transformed into a brand-new, shiny person, leaving the baggage of the previous years behind me, like a rom-com film made real. That didn’t happen, so I waited til 8.04pm, the time I was actually born (spinning it out, yup). And? Nope, nothing. I’m still the same old me. I guess it’s up to me to make the magic happen…..

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