Jun 06 2015
10 Comments
Symptoms and Treatment

So MS Isn’t Painful?

MS painThere’s a misconception that MS is somehow pain-free and more of an irritant than anything else.

You know, the stumbling, the dodgy memory, the heat intolerance, the fatigue. In the grand scheme of things, not a bad little illness to have, right?

Wrong.

Sure, we can ‘laugh’ at the stumbling walk, until we trip down the stairs or fall over the in the shower, still clutching our Herbal Essence. We can put up with the joshing about our forgetfulness and fondness for post-it notes. As for the fatigue, well that’s just downright cushy of course. But pain?

Well, over the last month or so I’ve been in a lot of pain. First up was the heat intolerance. People will tell you it’s perfectly simple – just stay out of the sun, pop a hat on and drink lots of water. Why didn’t I think of that? If it were that easy, I would stay in a shady corner until the Christmas goods start appearing in the supermarkets.

So, the heat made me wilt. It pulled the plug on my energy, which was bad enough, but it then began to bring up intense itching, which to my horror, turned into a grotesque rash of blisters. To cut a long story short, after steroids and jumbo-sized bottles of grotty cream, it’s under control but I’m now left with ugly scarring all over my arms. And they still itch at the merest hint of sun, even through clothing. The boss has moved on from nicknaming me Half Shift to Apocalypse Zombie.

So far so bad but worse was to come. I’ve always had neuropathic pain in my legs, feet and arms and my dose of Pregabilin has been steadily increased to cope with it but over the last two weeks it morphed into something truly evil.

Take yesterday. I had a good day at work, got home, sorted The Teenager out (he’s on exam study leave, aka, doss around in bed all day eating toast), and put out the rubbish. Then blam, a whoosh of extreme nerve pain. I lay on the sofa whimpering and it rendered me useless. I tried to lie still, but the pain kept coming in hideous waves, along with intermittent violent twitching in my legs.

Sleep seemed the only answer so I set my alarm and tried to doze off. Only to be awoken by The Teenager crashing downstairs looking for the vacuum cleaner (he’s quite unfamiliar with it). Of course, after being holed up in his room all day, he wants to clean it at 8pm. He bashed every skirting board with the vacuum, sang (badly) at the top of his voice and chatted shouted to his friends on the X-Box before rushing back downstairs to make some toast.

So the next person who tells me I’ve got off lightly with MS, please excuse me while I trip you up and poke you with a cattle prod.

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May 27 2015
10 Comments
Emotions

The Un-Signposted Road

signIn the three years and two days since I was diagnosed with MS, I’ve been waiting for A Sign.

Something huge, massive, with the words ‘Congratulations! You’ve made it through! Life Can Now Return to Normal!’

I thought, ok, if I go through the five seven twelve stages of grief and adapting to MS, I would pop out the other end ready to pick up the threads of my old life. I would brush myself down and carry on regardless.

Only three problems with that: my old life no longer exists, MS is a bit bigger than I gave it credit for and there won’t be a sign.  I’ve come to realise that there simply isn’t an end point, it’s a continuous process, so I might as well just get on with it (note to self). Quite possibly I’m stating the obvious and am a bit late to the game.

Looking back, I think I was a little guileless about the whole thing. I used to think A Sign could be:

  • When I would no longer spend an evening bemoaning my fate and crying into my wine, Morrissey playing on a loop in the background.
  • When I didn’t reach for the MS Nurse Relapse Hotline every time a tiny new symptom appeared.
  • Ditto, I wouldn’t endlessly google every tiny new symptom which would bring up a list with not just MS but every other horrifying illness on the planet and subsequently I would go to bed crying (see first point).
  • When I wouldn’t quake with fear when meeting with my neurologist as I would be semi-fluent in long MS medical words.

Nope. Well, of course they all count towards some kind of acceptance of my weird and wonderful new life with MS, but it’s not the whole picture. MS has a funny way of tripping me up, literally.

Take the other day. I woke up, put the kitten out, put the kettle on and fell against the cooker. Gah. Later that day, I stumbled and whacked my arm badly. I had stranger than normal tingling in my left leg. My hand hovered over the MS Nurse Relapse Hotline leaflet. But, no, I put some Morrissey on, poured a glass of wine and settled down in front of Google instead.

I have therefore decided to count my blessings and enjoy my new life. The Teenager is thriving, my studies are going well, I love my job and, despite the occasional set-back, life is looking not-too-bad. Although I do wonder if my neurologist will have some pesky new MS words to slip into conversation the next time I see him, the meanie.

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May 19 2015
16 Comments
My Ramblings

If You Don’t Get It, Don’t Worry

hadnYou know that phrase about MS, ‘If you don’t get it, you don’t get it?’

I have a real problem with this and I seem to have stumbled over it a lot recently.

Yes, we may belong to a hideous ‘club’, bound together by our lesions and twerks (twitching and jerking at the same time, gah) but does that mean we seal the borders and allow no one else in?

Ok, so no one without MS will ever understand what it’s like to live with it. Similarly, I don’t know what it’s like to live with more than one child, or to live with cancer or to live with an addiction to scratch-cards.

But, I would like to think that if I had a friend who confided in me about a particular problem, I would empathise and try to understand. If this friend then turned round to me and said, ‘you don’t get it, you’ll never get it’, I would beg to differ.

Problems have a funny way of overlapping; I don’t have cancer, but I resonated with the recent adaptation of ‘The C-Word’. I don’t have a gambling problem, but, boy, was it scary how quickly I fed $5 notes into a machine in Las Vegas.

By saying to anyone else without MS, ‘you just don’t get it’, you cut off a huge amount of support. I realise we will never convey the debilitating effects of MS fatigue, or be able to describe an MS hug. That’s life; we can’t experience everything in this world.

It’s just that phrase – it’s inclusive, a little small-minded and ridiculously hopeless. Unless we describe our symptoms and how they impact on our lives, how can we convey just what MS does to us? Can you imagine if I did this with The Teenager?

  • I’m going to sleep. You won’t understand, you don’t get it, go away.
  • Ok, I tripped. You wouldn’t understand. Leave me alone.
  • So I dropped my mug of coffee. And?

How would that make him feel? Anxious? Frightened? Isolated? Why not let him into my life? Wouldn’t it make him a kinder, more well-rounded person? He doesn’t need to know everything, of course, but enough to not feel excluded.

Newly-diagnosed days are a great example. It is only by allowing the partner who accompanies the peep with MS in that we can begin to create more understanding in relationships. What we can sometimes forget is that MS doesn’t only affect us, it affects every single person around us.

So how about we lighten up a little? I will never experience the MS my father had. And for that I am grateful. But it doesn’t make me less of a person.

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May 17 2015
4 Comments
My Ramblings

How Ugly is ‘Too Ugly’?

orangeAs to be expected, I’ve been ruminating/crying about my recent experience of TV-land. (see previous blog post).

The spiel for the dating show applicants is: ‘Do you have a medical condition or physical disability that makes dating a challenge?’

Hmm. I have raised my head long enough from my family-sized tub of Ben & Jerry’s to have a definitive answer to this.

“No”.

Not under that title anyway – ‘Too Ugly for Love’.

To be fair, yes, as is common with many other 41 year old women, I do pick over my  ‘faults‘; they are as follows:

  • In certain lights, my nose can appear a bit too large for my face – candlelight is good for this reason as I’ve never got round to learning the dark art of ‘contouring’ with 20 different shades of beige make-up.
  • I am fat. No denying it, although I prefer ‘curvy’, ‘Rubenesque’ or simply, ‘womanly’/’feminine’, and with my height, I can carry it off. Honestly.
  • I have a fairly small mouth, but I make up for it by being extremely gobby on any subject.

This probably doesn’t make me ugly, just normal. But chuck a diagnosis of MS into the equation – yes, it makes dating more difficult – but it certainly doesn’t make me ‘Ugly‘.

Ugly is such a cruel word, and definitely not a word I would ever equate with a disability. To this end, I consider myself ‘Beautiful Enough For Love’, my alternative title. A disability makes us:

  • Open to life in a way we never thought possible – life is short and for the taking.
  • We are non-judgemental – we know that every single person has a ‘disability’, whether it’s a personality ‘flaw’, a ‘disability’, a ‘mental health problem’. Labels are pointless and meaningless. We are who we are, warts and all.
  • We have taken up the challenge of a lifelong illness and that makes us brave and wondrous.

All this adds up to why I chose not to take part in this programme. It is demeaning. It is not empowering – merely schadenfreude at its most despicable.

My life is interesting enough, and if the right person comes my way, I will date him without the cameras and exploitation.

And if not, there’s always a Saga holiday. I’m 9 years off qualifying …

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May 15 2015
12 Comments
Emotions

When MS Is Your ‘Significant Other’

datingBefore work one day this week, me and The Builder were busy slurping our McDonald’s coffees, nattering away.

We usually talk about screws, fixings, grout and such like. As you do.

But today, he was telling me all about his neighbour and his have-to-be-seen-to-be-believed dating adventures.

Apparently this neighbour has six women chasing him and has recently been proposed to. Gah.

I have no men chasing me and am sadly lacking in the Sorrento Engagement Experience.

This got me thinking.

Quite soon after MS popped up, my partner scarpered. And I’m quite glad, in hindsight.

But now, three years down the line, where does that leave me?

I was recently contacted by a TV  company. They were lovely; they enjoyed my book, liked what I was doing to raise awareness about MS and asked if I would like to take part in a dating show.

Well, my heart leapt. At last! I could find a croissant-eating academic with an interest in knitting. I was sold.

Until.

The email.

Thank you for expressing an interest in ‘Too Ugly For Love’.

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