Friday, June 24, 2011

Fit For Conference?

It's a big day today. Left Foot Forward have invited myself and Sue Marsh to be part of their seminar panel at the Compass Conference 2011 - Building The Good Society.

Being spoonies....our plans haven't exactly gone to plan so far...

As of yesterday we still didn't know if Sue was going to be well enough to travel, let alone string a coherent sentence together on Saturday morning. Crohn's + virus + chest infection + antibiotics + steroids = Sad Suey. This presented us with a slight problem, whilst either Sue or I can cover the subject as a whole if necessary Sue was also appointed chief wheelchair pusher. If she wasn't able to make it to London I was in trouble...especially when it occurred to me that alone I don't have enough mobility to make it in and out of the hotel. Fortunately Sue is well enough to make the journey, just in time for my ability to travel to be in doubt.

At six thirty this morning I gave up on the idea of sleep altogether and started to vomit up the medications I'd spent all night throwing down me in the hope they'd induce sleep. By 7.30 Sue and I were on the phone doing our 'oh god' routine. It's never a good sign when all you can say is 'oh god' and 'huh?' particularly when those are interspersed with puking breaks.

The thing is...we've been really sensible me and Sue. We've known this date was coming for weeks, we've planned to travel the day before, spent the whole week resting in preparation and employed our specialist disabled organisation skills to the max to ensure everything runs smoothly. Whilst we might be able to control bookings, what we want to say and how to say it, the one thing we simply cannot control however hard we try is our own bodies.

And this is really what 'fit for work' with a fluctuating chronic condition means. I might stop vomiting in another half an hour or so and be tired but fit to travel. I hope so, I usually do. But on the other hand I might not. And there's no test in the world that can change that, no possibility of health improvements to reassure an employer, it just is what it is. None of us with these variable conditions can control them, whatever the latest trendy biopsychosocial model of "it's all in your head" the DWP have snatched upon as proof we can be removed from our benefit dependancy and forced into jobs that don't exist. Day by day we just don't know and can't control our conditions. So really....should an employer be expected to?

Sue's version here

6 comments:

Anonymous said...

You two are amazing. Just the thought of the word 'train' makes me feel sick.

I wish you both the best journey and know you will be great ambassadors for the disabled.

Sending all my spoons in your direction (if only we could loan spoons eh)

Huggersssssssss

Sue

Ilkut Terzioglu said...

Hi,

I hope you are well.

I am reaching out in case you missed my first comment. Would you be interested in taking part in our research in health industry.

Best,
--
Ilkut

fourbanks said...

As sue above has said you both serve the sick and disabled proud and hope everything went to plan for you both and have enjoyed yourself

BrokenOphelia said...

*hugs* Both of you are incredibly brave. I know how hard it can been to travel in a wheelchair from scouseland too on the train as sometimes they aren't so great at getting you on and off the trains (admittedly not as bad as Shrewsbury but thats another story altogether). Good luck with the confrence. I hope you both got there safe and that you are feeling at least funcitional soon.

RockHorse said...

So, so true! I sincerely hope that your bodies decide, synchronously, to treat you kindly for the conference and beyond. And I hope that you are now warm, cosy and comfortable and enjoying room-service :) And all the best for conference tomorrow - know you'll both do us all proud!

xJ . . . capcha is 'belli' - hope it's just a comment on the beauty of you two and not an English misspelling ;)

Achelois said...

Hi Kali,
I just thought I would send my very best wishes. I have done all the Oh my god you are both so brave etc over at Sue's blog so I will not bore and repeat myself here. Also there is something wrong with my left eye again and my brain is mush. I just want you to not have a stressful journey. I want you to have yummy room service (although as I said over on the other half of you blog) I would worry a lot about the bill.

GOod luck I will be thinking of you.