Friday, 30 August 2013

A Happy Reminder

I have medical stuff going on, but it is me, with my talents and skills in tow making the choices. I am, as Carla Spear rightly says, NOT my illness, and her 'Bus' analogy is just so apt. It is my choices that define me and shape my life.

And even if I have a patch where I cannot do much at all and find myself crashed on the sofa - I can be glad for all the things I did which resulted in me being there. And of course learn from it to improve my pacing in the future. But a day of doing very little is DEFINITELY worth spending a couple of hours helping babysit my nephews and nieces, or shopping with my little sister.

Oh, there are many "Can't"s in my life, but also many "can"s. And yes, some of my "can't" things are things which for most people are "of course" things. But I there are so many "can" things - from dancing to facebooking, from doodling to product design and sales, but one of my favourite "can" things is managing my conditions. This is something I always can do.

By managing I don't mean "Waltz around doing whatever I want when I want with no consequences". Of course I have consequences. Which can be anything from pain to a full on attack of the Zombies. 'Management' is about accepting where I am now, learning how my body reacts, and making smart choices (and in my case involves physio, pacing, wheels, medications, more physio, more pacing, salt, compression stockings and lots more). Plus I think that a degree of thinking differently - not focussing on the 'can't' and 'but I want' and 'it's not fair' (like not being able to work/go out when I want) but on what I can do - is part of managing a long term health condition. 

Life can be rewarding and fulfilled even when lived with limitations. Can't exists, but I'm too busy with Can to worry about it.

And now the wall of my office happily reminds me of these every day.

As well as reminding me that, quite simply:

I love my job.

Tuesday, 13 August 2013

'Good Deed' Smugness.

You know how annoying and frustrating it is when someone offers help, which isn't actually helpful, but they are so convinced that they are doing a good deed that you can't actually stop them or change their mind?

Well, I think I shall have to be more patient with them.

I'm not saying I'll always sit back and let them help, but I'll try and be more respectful and positive in my refusal. Why?

Because yesterday I did a 'Good Deed' helping out another disabled person.

I was shopping at a petrol station (M&S food. Mmmm.) and heard someone beep their horn. And again 3 seconds later. Then lots of times in a row. I looked through the door and saw a van with the occupants trying to get the attention of the staff - waving their blue badge and trying to ask for assistance. I went to get a member of staff, but then one walked out past me. I assumed they were going to help. But no. More beeping - I looked out and said staff member had gone off to do their own thing. And still none of the staff were the least bit interested in the beeping or the blue badge being waved at them. This time I accosted a member of staff and politely asked them 'Do you realise that the beeping is someone with a disability asking for assistance?' Staff went to help, problem solved.

And guess what? I felt all good. I'd helped. I felt needed, useful, like a good citizen. And smug. Yes: self-righteous, 'better-than-everyone-else' conceit.

But never fear, the smug delusion quickly shattered as I approached the vehicle and said:

"Hello random stranger, have a business card, you might want to buy my stickers."

Sunday, 4 August 2013

"Hello Aunty! can't walk very well."

Sometimes I wish people would keep their childish, matter of fact, accepting ways.
So comfortable with the concept of me being different and so unafraid of saying it how it is.

Thursday, 1 August 2013

Nursing, bowel movements - a patient's thoughts.

On twitter, the #WeNurses were having a chat about poo and constipation.

So, in a very random blog, because I couldn't work it out in 140 characters.

Complex patients who are on a ward for a while who are used to self managing their medical needs at home might not flag up issues with constipation. They may shrug off the issues as insignificant.

Because it IS insignificant - even though it is also really important.

I know this doesn't make sense, but what I mean is:

I have probable delayed gastric emptying, and always have issues due to bowel laxity (a common complication of Ehlers Danlos Syndrome) and medications. I also have severe HEDS (connective tissue disorder) and PoTS (autonomic dysfunction)

However, when I was hospitalised a few years ago, for 5 weeks, despite...well....concrete blocks being an appropriate description, I wouldn't have flagged it up with staff had they not asked my 'grade' on the bristol stool chart every day.


Because I was there for cardiac issues. Cardiac= I won't worry you with other stuff that is normal for me. So I would only raise cardiac issues unless pressed (or a joint had fallen off and I couldn't realign it - joys of EDS) I was there to get better at staying conscious. And satisfying though it is to do a proper bowel movement, quite frankly, when my heart rate keeps hitting 160 because my autonomic system is throwing a strop, I couldn't care less about a toilet stop!

But if you ask, I'll tell you.

I tell you 'normal for me'. Which actually can be anywhere between grades 1 and 6. And which often requires intervention at home (sups, laxatives, massage, manual assistance). So it means nothing, other than my bowels are  a little messed up on occasion.

But if you ask me what the grade is - you will know accurately, and can take action if needed.

Long live the bristol poo chart!

Yes, there really is a Bristol Stool Chart - a chart of poo.