Feb 23 2013
8 Comments
My Ramblings

Sick or What?

Adapting to the role of  an ill person is not easy. Society makes it very clear – if you are sick, you must want to get better and you must co-operate with the medical establishment.

In return, society will ‘allow’ you to shed normal responsibilities of work and household tasks for a limited time, until you are better. You are recognised as being in need of care and unable to get better by yourself.

This theory was first developed by Talcott Parsons in 1951, and despite its shortcomings, still holds firm in most peoples minds. But what happens if you have MS, your illness fluctuates and often you are well enough to participate fully in society? Where do you stand then?

MS can mark you out as a fraud. Some things said to me over the last two years:

  • ‘But you look so well.’
  • ‘When are you giving up work?’
  • ‘Wow, you’re drinking alcohol.’
  • ‘I thought you were ill.’
  • ‘Why are you so tired, you were fine yesterday?’

Living as a fairly young person, with a fairly invisible illness renders you an uncomfortable anomaly. I have no standard ‘markers’ of a sick person, no visual clues. People just have to take my word for it, and this is where the tension arises.

I am in a no-man’s land between being well and being ill. I still want the ‘privileges’ that being well and a productive member of society brings – a job, a social life, status, etc. Yet I also need the exemption when I am ill, the extra support and help and many people, and society, would much prefer it if I chose one scenario and stuck to it. I can either be fully productive and keep quiet, or give in and take up the sick role full time.

Other people with MS can be just as judgmental. I once went to an MS support group and felt very out of place and unwelcome. Finally, the organiser took me to one side and gently explained that I made the others uncomfortable. I was talking about work and going out for a meal that evening. He said that this group meeting was often the only outing they had in two weeks. I wasn’t ‘sick’ enough to join their group. I never went back.

What’s the solution? I have no idea…..

Tagged , ,
Feb 21 2013
18 Comments
Symptoms and Treatment

Hospital Bed Booked…

I had a letter a couple of days ago confirming that I’ve been booked in to hospital for my follow-up Alemtuzumab treatment in July. Last year I was in for five days and four nights.

This year, only three days and two nights. Looking back on it, I was a complete hospital novice. So here’s my list of what I will be doing differently this time around:

  • Pack my own pillows. The hospital ones (if you are lucky enough to get one) are super-thin slices of foam. And that’s being generous.
  • I won’t be taking a huge pile of books. I ended up reading only newspapers and trashy magazines, but I did learn a lot about Heidi and Spencer Pratt’s marriage and Cheryl Cole’s beauty routine.
  • Staying overnight in a Neuro Day Unit means you have absolutely no privacy all day. People come and go for tests and treatments, usually bringing a bunch of family members with them. It’s like having a whole load of strangers parading through your bedroom. Must also remember to lie when people ask me if lumbar punctures hurt (they do, I was a screaming banshee).
  • Cannulas hurt like hell too and it stays in the whole time. Must get it strapped up when not in use as do not want to recreate the Psycho shower scene like last year.
  • Much as I loved the regular tea trolley trundling around at all hours, it tastes awful. Will make regular trips downstairs for the hard stuff.
  • Accept all the sleeping tablets I can get my hands on – hospital beds are uncomfortable, some lights stay on all night and there’s strange people wailing down the corridor.

I will be a calm, confident patient. I know the score this time round. Still a sobering experience though, when the reality of MS really kicks in, far more than just putting up with symptoms on a day to day basis. This is real. The doctor says so.

So when everyone else is packing for a week in the sun, spare a thought for me as I pack my pyjamas, fluffy slippers and selection of snacks to munch on (Jelly Babies, dried banana slices and cookies). God knows what I’ll look like walking through the hospital corridors on my way to book in, struggling with a huge bag and two pillows under my arm.

One other point – do hospitals have wi-fi? How will I stay up to date with my blog and Twitter??

Tagged , , , , , , ,
Feb 19 2013
6 Comments
Work and Studying

Perks of the Job

An unexpected bonus of working in other people’s houses as a builder’s mate is not the coffee on tap, the bacon butties or the biscuits.

I’ll let you into a little secret – it’s the sneaky pleasure of having a nose around.

Me and the builder don’t talk about jobs in terms of what work we actually did there, it’s more, ‘oh, you must remember that one, you know, the one with the awful, red, flowery wallpaper and bizarre yellow sofas’ or ‘the one with all those very odd mirrors in the bedroom.’

It’s great fun, passes the time of day and you can tell a lot from people’s houses. Does that make me sound awful? C’mon, we all do it, don’t we?

I particularly like working in houses with lots of books and am vaguely suspicious when they’re conspicuously absent. Many a happy coffee-break has been passed looking through the shelves thinking, ‘ooh, read that’ or, ‘oh, that looks interesting.’ Same for artwork and pictures. And I adore family photographs.

We’ve worked in some creepy houses though. One had a bedroom stuffed full of life-size dolls. The owner was in her 30’s. In another, there was a massive model railway track taking up the biggest room upstairs, the bathroom we were working on was tiny and the owner worked nights, so all we heard were sinister snores from down a very and gloomy dark corridor.

On the upside, I’ve picked up some fabulous home decoration tips. People have the most brilliant ideas. My favourite was the huge hallway, a large square room basically,  painted entirely in black. Sounds hideous, but it was stunning. My hall is the size of an outdoor toilet so I don’t think I can steal that idea. And I definitely couldn’t fit in the matching chandelier.

Anyway, we had a very productive day yesterday pulling out an old bathroom suite ready for the new one. Then the builder asked me to pop a few tiles off and handed me a hammer and chisel. Easy. Four tiles in, there was an anguished cry. I popped my head round the corner to where the builder was standing. The entire other side of the wall had cracked.

Change of plan – we’re plastering today…

Tagged , , , , ,
Feb 19 2013
6 Comments
Work and Studying

Studying…Meh…

Just a quick post – I’m in the final year of my degree and my brain’s turned to mush, so until October when I can pull on my cap and gown, I’m going to blog every other day rather than every day.

Don’t worry, I’m still a mouthy so-and-so…

p.s. new blog post will be published in a couple of hours then I’ll see you Thursday – wish me luck!

 

Tagged ,
Feb 18 2013
15 Comments
Symptoms and Treatment

Putting On Mascara With Boxing Gloves

Ever tried putting mascara on wearing boxing gloves? Or holding a lovely cup of hot coffee? Pretty tough. My last relapse affected my hands and just for a laugh, they still play up every so often and this weekend was no exception.

Like most relapses, it came out of the blue. One day I was elegant(ish) and my hands were just things that did things hands normally do. I didn’t really give them much thought.

Until the morning I flicked the kettle on and knocked it over, swiftly followed by my cup. Odd. When I left the house that morning, I missed the door handle. Odder.

I tried to explain to the MS nurse that my hands were either a few seconds too quick or a few seconds too slow, they drop things unexpectedly and sometimes they’re so numb, they feel like boxing gloves. It doesn’t sound like such a huge problem, but socially it’s dire.

Putting on make-up is comical – I gave up on eyeliner months ago and mascara wands hurt like hell when they’re poked in the eyes. Lipstick goes on well until, blam, whoops, dodgy line – The Rocky Horror Show’s got nothing on me.

Wine glasses are a minefield. I’ve smashed countless. Be warned, never clink glasses with me, just say cheers and nod. All my plates and bowls are chipped and you can hear me doing the washing up a mile away.

If I’m walking through a cutesy, arty gift shop, I have to keep my hands rigidly by my side or ever so carefully reach out, inch by inch, to pick something up. I can clear a shelf of pottery in one fell swoop. And my days of playing KerPlunk and Operation are long gone.

I used to like craft work but can’t knit any more and the glue gun’s been in the drawer so long it’s seized up. I tried to make a Christmas wreath out of paper hearts and glued everything except the paper. The cat made herself scarce so now I scroll through Pinterest and sigh wistfully.

I persevere though. I am going to invest in melamine plates and plastic wine glasses and I will make that wreath by next Christmas if it kills me. If you see it, be polite and please don’t snigger….

Tagged , , , , , , ,
← Older posts
Newer posts →