Friday, 21 September 2012

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!

Monday, 17 September 2012

brief encounter


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.

Sunday, 16 September 2012

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!

Wednesday, 5 September 2012

here comes the flood

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.

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.

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

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!