i love the smell of righteous fury in the morning

Always nice to start the day off with a rant!

I'm fairly active on most social networks, one which I don't necessarily see that much of a point to is LinkedIn - have I totally got this wrong but isn't this basically just Facebook-for-career-minded-adults?

Anyway, I'm in a number of groups that are relevant to my work - one of them, which sounds as dull as ARSES, is a closed-group called Thinkaboutpricing.

A DISCLAIMER: the guy running this is Tim Baker, who is a bit of a god in the UK Arts scene - I've worked with him occasionally over the years.

Earlier today, I picked up on a thread which was responding to an article in The Guardian about the concept of "Paid-for Queuing" - which is surely the only outcome from tickets for high-demand events only being available on the day of a performance, and which opens up all kinds of issues as far as accessibility is concerned.

One comment went thus:

I immediately got on my high-horse - I think it was the jokey little "funny that" comment at the end, which is a particularly pernicious kind of disabled-person bashing, is it not?

HERE COME THE PAIN:

Did I overreact? I don't think I did.

gaucho

One of the many handouts we got at the Working With MS day the other week was one called Shrinking The Monster. Here's the description from the MS Society Website:

Written by Jo Johnson, a neuro-psychologist, this workbook can help you recognise, name and tame the ‘MS creature’ who takes up residence, uninvited. This way of thinking about your MS doesn’t suit everybody, but many people who have used this approach seem to find the idea of shrinking the monster increases their feeling of control. Drawing on cognitive behavioural therapy and narrative therapy, Shrinking the monster tackles serious, personal issues, but can be used and discussed with the whole family including young children.

Now I'll be honest (and I'm speaking as someone who's a bit of a newbie-convert to CBT), when I started looking at this I didn't think it was for me.

But when Emma looked through it, she got a lot out of it. Plus she named my monster: Gaucho.

This comes from my unholy interest in and fondness for the smooth jazz-rock stylings of Steely Dan. I'm not proud, I'm a man of a certain age.

Please Note - I've never had anytime for so-called 'Guilty Pleasures'. To my mind, you either like something or you don't. End of.

Emma thought the lyrics of their song Gaucho summed up the feeling that MS is a slimy, unwanted presence in our life - something ugly and creeping that is always there, skulking in the background:

Who is the gaucho amigo
Why is he standing
In your spangled leather poncho
With the studs that match your eyes
Bodacious cowboys
Such as your friend
Will never be welcome here...

I quite like this. Especially the fact that this is one of my absolute favourite Steely Dan tracks.

Talk about putting a positive spin on my condition!

For the last week I have been living alone. Emma and Evie were offered a free holiday, and I thought that I'd taken a lot of holiday in August. So off they went.

It's been cool to spend time catching up with friends but I'm very much looking forward to seeing my girls!

mind = officially blown

Just a short post to relate an interesting thing that happened at my last CBT session.

NB - I feel the need to couch some of the following in vague terms - apologies if this reads a bit weirdly.

I work in Arts Marketing and one of the things I work on is an annual arts festival. This year's festival was last week.

A couple of days later we received a complaint from a member of the public who had attended an event with her young son - just to ramp up the complaint a little further, her son has a developmental disability.

Now whenever I or any of my colleagues receive any messages like this, we automatically go straight into "mega-apology-mode". Then I read her email a bit closer.

Her complaint was (essentially) that the event, which took place at night, was in a location that she didn't know. And that being in unfamiliar surroundings, amongst crowds of people, late at night, can make her son panic.

HUMBLEBRAG - for this particular event, we got an estimated audience of 25,000 people.

So I pretty much spent all of last week completely full of sympathy for her son - who will undoubtedly have had a SHIT time - and raging about his mum.

The basic thrust of my rant(s) was as follows:

With my relatively low level of disability, whenever I go anywhere unfamiliar, I PLAN like it's a military operation.

How am I going to get there? Will there be parking? If I'm getting a lift, where am I going to get dropped off / picked up? Have I got my stick / orthotic support? Where are the toilets and where can I sit down?

Y'know, that kind of thing.

And if she's her son's primary care-giver, she should really have done (at least) that level of research in advance. If she had, she might have realised that this particular event was not the best one for her to attend.

So I relay all of this to my therapist. And she asks, Why am I so upset about this? If anything it sounds like she's deflecting her own feelings of letting her son down, I'll probably never meet him. So why have I been so angry?

"Are you just angry about the fact that you feel that YOU have to plan that much before you leave the house?"

So she totally called me out on it!

This sort of revelation is probably not that big a deal to anyone who has had any kind of therapy before, but my third-eye was well-and-truly squeegeed.

It goes back to something we talked about at the MS Seminar the other week: I need to pick my battles.

And I need to examine my motivations for involvement in any potential skirmishes more closely! The mind is a slippery beast indeed.

Shaw Taylor says....

KEEP EM PEELED

a word of explanation for our younger and more 'non-English' viewers:
"Keep 'em peeled" was the catchphrase from 'Police 5'.

Police 5 was a pioneering, early version of Crimestoppers and Crimewatch, presented by former continuity announcer Shaw Taylor and produced in association with Scotland Yard. Local versions were also produced by ATV and then Central and also Southern Television.

image and description from Ultimate LWT

is this helpful?

Now we all know that you can get virtually anything that you could possibly want in America, right? But this was a new one on me - Invisible Illness Awareness Week. 

It was brought to my attention by this post by Jackie on Blood, Poop and Tears - she used to write The MS Blog. But that site seems to be on haitus now and I've always really enjoyed her writing so I'll follow her wherever her muse (and condition) takes her.

Plus this site is a MAJOR perspective / reality check for someone like me.

I have to say I TOTALLY agree with Jackie's post - what good is whining online about every new symptom going to do anyone? I can sometimes lose patience with people on forums like Shift.MS - it can get a bit "woe is me" at times.

But having said that, there have been times when the information shared has been really useful. And it's always good to feel a little bit less alone.

Controversial POV coming up - duck for cover

I think maybe the problem is that the people who tend to use social netowrking and forums are usually a bit younger - and obviously most people get diagnosed with MS in their 20s and 30s.

And people that age tend to think that the world revolves around them, and "NO-ONE UNDERSTANDS WHAT I'M GOING THROUGH".

I know I certainly did a few years ago at least. And being that age and having to deal with being told that you have a chronic illness, and that the future you THOUGHT you were going to have has been misplaced,  is going to be insanely difficult. 

But I'm not going to let MS define me or hold me back from doing the stuff that my family and I want to do - I have MS, it doesn't have me.

I like to think that my posts following my horrible relapse this year have focused mostly on the positives that I've gained through CBT, and Physiotherapy, and the Working with MS seminar  - in short, all of the ways I've been trying to find that help me DEAL WITH STUFF.

The help is out there (even with this government), you just need to be forceful about asking for it and making sure that you get it.

And I've certainly been a lot less 'backwards about coming forwards' about my condition - if someone asks me why I've got a blue badge and a walking stick, I'll tell them. It's certainly not something I'm ashamed of.

Again I'm struck by the massive irony of asking people to Stay Positive on a site called "It's a Shit Business". But we all have our crosses to bear.

I love this bit from Jackie's post:

A pity party is what you get to do after you have a bad day or experience. It is not the state you should be living your life in. You have a chronic illness. Have a good cry. Ok…now move the fuck on and do something about it.

See? I think that's great - yes, we all have bad days, and I know people who have terribly bleak days even without a Chronic Health Condition (I know - how DARE they? The very nerve...). But shit happens to everyone regardless.

Let's get on with it!

brief encounter

A PICTURE OF FATIGUE

At work earlier today, 5 minutes before QUITTING TIME, a colleague came in and asked me a question.

Unfortunately I had completely shut down. I could barely construct a sentence in order to tell him that my brain had switched off.

God, this condition sucks on all kinds of little, tiny levels!

And it's not great to be in a Senior Management role and to just CTRL-ALT-DEL.

working, not working

So last week we went to the Working with MS conference. It was a very long day but really worth going to.

The first session was led by an MS Legal Officer from the Disability Law Service, talking about all the many ways that unscrupulous employers can screw you over.

Working Yet Worried is the name of a very useful publication from the MS Society, a toolkit of resources for people with MS in employment. There are sections about if / when you should disclose your condition, and also advice about HOW to do it - I wish I'd read that before I blubbed in the middle off a staff meeting.

After a personal perspective on Access to Work from Stuart Nixon (more on him later!), we had a session on Managing Fatigue. I think Emma found this section really eye-opening - obviously she's amazingly supportive all the time, but fatigue is such a tricky thing to explain to 'normals'.

One of things that came up through the day was the need to be aware of trigger points and to pick your battles - that might be a work situation, or it might be whether you carry a suitcase up the stairs. We have to really weigh up the physical or psychic cost of every transaction or confrontation. And think is it worth it?

After lunch there was an overview of CBT which wasn't anything new to me but which underlined how useful it can be when people enter into it with an open mind. No-one gets anything out of it if they start off thinking "I'm not going to get on with this!"

The whole day was led by Stuart Nixon, the vice chair of the ms society. He was amazing, a truly inspirational guy who's had to deal with more than most, but still keeps on keeping on. It was a pleasure to spend the day in his company.

Stuart talked about the first time he used a wheelchair. He was on holiday somewhere hot with his wife and the heat had been kicking his arse all week. They had an excursion booked and Stuart decided to sit it out and sent his wife off on her own.

When she came back she said it was the worst day she'd had because she should have been sharing it with Stuart. He's been in a wheelchair pretty much ever since.

I know when I was first diagnosed, I had a lot of fear about 'ending up in a wheelchair', as if you get a wheelchair and that's GAME OVER.

That's really insulting to ANYONE in a wheelchair, even before the London 2012 Paralympic Games. But it was good to hear Stuart's story - a wheelchair is just another tool to make our lives easier.

It was also great to just chat with other people in the same boat, especially Mark who 'friended' me on the Shift.MS site.

The day after Mark got in touch to say that he'd been out with his family and had borrowed a wheelchair and found it to be a brilliant experience.

I should be more open to these ideas, maybe.

---

This whole day was over a week ago, and it's taken me until now to get this blog written.

To be fair, MS has been kicking MY arse this last week. Just finding things tiring, plus my cognition has gone on the fritz at times.

Ho-hum, such is life!

here comes the flood

NOTE TO SELF:
Don't leave such long gaps between posts as you end up having to write completely unwieldy posts that people will rarely read.

Work issues
My boss has quite a way with words.

A couple of weeks ago we had a chat at the start of the day where he talked about the need to come up with some support for me at work. We need this as he only certainty is that "my next relapse is in the post" and the only certainty is that there will be "an increase in disability".

In discussions on Twitter I came to accept that, although he was correct in this, it wasn't really his place to say it. Especially not at the start of the day.

I'm certainly going to be bringing this up at the Working with MS conference this weekend.

CBT
Ironically this conversation was on the morning of my first session proper of CBT.

I do think this is going to be really useful. But my main focus recently has been my toilet issues. So we've been talking about that stuff.

My therapist pointed out that I've had ONE accident, against THOUSANDS of trips out of the house. But despite that I've been letting my fears get the better of me, even stopping me taking Evie out!

As she pointed out, the benefits outweigh the possible outcomes, which are statistically unlikely. Not rocket science, and not anything that members of my family haven't said many times before.

But sometimes you need to hear things from someone who isn't personally involved.

Holiday
I took that little gem with me on holiday the following week. We just went away in this country with my mum and dad, my brother and his two boys.

Now. Parenthood is tiring, obviously. But holidaying with three children all under the age of eight is seriously fricking exhausting.

On the second day, the family all went to the beach, but I felt my old problem rising so I stayed at the house. I was so pissed off and I beat myself up for a few minutes.

Then I thought, the benefits outweigh the possible unlikely consequences.

So I went to the beach on my own and walked along the beach hand in hand with my baby girl. Literally baby steps, but it's a start.

The picture attached to this post shows who I'm doing all of this for

Urology
So I finally got an appointment with a urologist this week!

(I swear I don't like talking about pee problems all the time but we're getting to the end I promise)

To see what we're dealing with, she wanted to take a scan of my bladder after I'd 'been'. And although I felt as if I needed to go again, she said that I was completely empty.

So the problem is totally in my head.

Bladder Retraining Programme, here I come!