Feb 13 2014
6 Comments
The Teenager

Teenage Tantrums…

Raising a teenagerOur little house is in a state of uproar.

To begin with, I trusted The Teenager to go to the hairdresser on his own.

He’s fond of the woman who cuts his hair and he’s partial to the lollipops (meant for the little kids, not six foot 14 year old’s), so I thought I’d leave him to it.

Off he went. Within half an hour, a photo pinged to my phone. A selfie of The Teenager, pretty much bald. And I paid a tenner for the privilege.

Then Parent’s Evening. Or rather, lack of it. After last year’s disaster (a complete and utter bun-fight), I asked him to kindly request that his teachers email me their reports. MS heat intolerance and unsteadiness on my feet make it nigh on impossible to queue-hop and use my elbows effectively.

I waited. And waited. ‘Oi, you’re teachers haven’t emailed me yet.’

‘Oh, computer servers must be down (rolls eyes) you know what it’s like.’

‘Hmmm.’

I waited some more.

‘Oh, there’s a terrible bug going round. Like, no one’s in school. Hoooooonestly.’

‘Hmm.’

I called the school. ‘Oh yes, you are the mother of The Teenager?’

‘Um, yes.’

‘Ahhhh.’

‘Oh.’

‘Yes. We have a few, well, issues.’

I explained what I thought I had organised. ‘Hah! (foolish parent). Anyway, an email was sent out to all the teachers, asking them to get in touch with their thoughts about my son.

Let’s just say it wasn’t pleasant. When he got home from school that day, I brandished a wad of printed off emails at him and demanded answers.

‘All the teachers hate me. S’not my fault.’

‘Why has one teacher said ‘he appreciates the difficulties with regards The Teenager attending after school training?’ You live a couple of hundred metres from the school. What’re you saying??’

(furtive, shifty look) ‘Dunno.’

Anyway, to cut a fraught story short, I reminded him that I did not spend an entire Sunday putting together a flat-pack desk from Ikea, just for him to put his telly on it. And the lovely little lamp I got him. Or the executive chair.

‘And why are you answering your teachers back?’

‘Dunno. They said I wouldn’t get any qualifications so I asked to see theirs.’

I was a girly swot in school. I have no idea where he gets this attitude from. What annoys me is that he can do it if he puts his mind to it. We had The Discussion. About how he was throwing away his future.

‘I’m not! Alan Sugar started off selling stuff from the back of his car.’. Give me strength.

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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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Feb 07 2014
14 Comments
Symptoms and Treatment

Dragging My Feet….

don't panicYou know when you wake up with a brand spanking-new MS symptom?

That heart-stopping moment when all your worst fears come crashing in on you?

Yup. This happened last week. A normal morning – coffee, cat, catch-up with paperwork, countdown to waking The Teenager.

Except that morning was different. My foot refused to play fair. It gave up the ghost, schlepping behind me like a stroppy Teenager (and boy, do I have experience of that).

Panic rose and I quelled it. The next day, same thing. And the next. A new symptom. Probably every person with MS’s worst nightmare.

I decided to beat it at it’s own game, determinedly lifting the naughty foot with every step. Only problem was, I looked ever so slightly odd. Exaggerated. Like I was walking in slow motion to the ‘Chariots of Fire’ theme tune.

I ran it past the MS nurse (the problem, not my foot) but declined an appointment. ‘I’ll be fine!’. I ran it past the chiropractor who urged me to call the MS team. ‘I’ll be fine!’ I put it out my mind. But it stayed and I dragged my foot round the house. Finally, I took the offered appointment.

What’s worse? Being told it may be a relapse or it may not be a relapse? It doesn’t really matter either way, I won’t take any more steroids. I can’t bear the thought of waking up at 2am and having a strong compulsion to dust all the lightbulbs and clean the skirting boards, such is the bizarre energy those tiny tablets give me. Plus they destroy taste buds. And I pack on the weight no matter how many edamame beans I eat.

So I am in a kind of weird limbo. I worry that the endless relapses have found a sneaky way through the Campath treatment I had. I worry about my mobility – the defining point of being accepted as ‘relatively normal’ within societal boundaries.

Above all, my dodgy, annoying, schlepping foot has dominated the last week. I am panicking. Ever so slightly.

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Feb 05 2014
8 Comments
Symptoms and Treatment

If You’re Happy And You Know It, Shake Your Meds….

Nurse RatchetI had my annual medication review at my doctor’s yesterday.

I survived the bloke who coughed all over me in the waiting room as he read a leaflet about the flu jab pinned to the notice board above my head (no hankie, yuk).

And the toddler who toddled in my direction, licking snot from his nose in tandem with every step, eyes fixed eerily in my direction,a mangled teddy in his hands.

The doctor was lovely. We rearranged my prescription, I waited for it to be printed off and I left,relieved that it would be another year til I was there again.

Buoyed up with the ‘how easy was that?’ sensation, I parked outside the chemist to pick up my repeat prescription.

Big mistake. Huuuuuuge mistake.

The chemist is tiny. Opening the door, I counted eight people standing around waiting. I clutched my prescription, desperately seeking someone who would take it from me. Finally, a woman made her way through the crowd, plucked it from my hand and peered at it.

‘Oh! A change of prescription. Let’s see.’

(I’m slowly slinking backwards into the wall of decongestants)

‘Address?’

I gave it. And my date birth. And my favourite TV shows.

‘Ah. I see you’re still on the BLADDER medication. Yes?’

(the assembled congregation are leaning forward, eagerly anticipating my answer) ‘Um, yup, if that’s ok, thank you very much.’

‘And the…let me see… NERVES?’

(wilts in corner, dying ever so slightly). ‘Not nerves, neuropathic (whispers) MS’.

‘AHHHHH.’

(she peers over her glasses, looks me up and down, as do the assembled crowd).

‘Now. What about THIS one?’

‘Um.’

I scribble my signature on the repeat prescription and joke with the woman next to me, ‘haha, being ill is like a full-time job.’ Lol.

She stared at me, devoid of any compassion, no doubt thinking back to the Benefits Row special live on Channel 5 the previous night.

I turned and absorbed myself in the Peppa Pig display, wondering if I should buy some bubble bath, just to look….normal.

Finally, I was rescued. A bag of medicine was thrust into my hands.

I fled.

I love chemists. They helped me through The Nit Crisis (not me, The Teenager, when he was The Child) . They were there when I needed cough medicine. But confidentiality?

Well. My name is Stumbling, and I take bladder medication…

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