Tuesday 23 December 2014

the most retrospective time of the year

I swear I'm not out to get the MS Society but this kind of tweet is the very height of mawkish sentimentality, is it not?

As I prepare to do some serious desk-tidying on my last day at work, I'm going to look back on 2014 - quite changeable, I think you'll agree.

This time last year we were bracing ourselves for many drunk shenanigans from our neighbours - as a sign that Derby is [makes tiny gap between fingers] *this* big, it turns out that my mother in law knows someone who knows HIM.

Which is how we found out out a few weeks ago that SHE had dumped HIM, SHE had a new boyfriend and HE was heartbroken.

A week or so after finding this out, we saw them out shopping together - and we remembered that the same thing happened last year - a noisy bust-up followed by a pre-Christmas reconciliation.

Ain't love grand?

Speaking of which, I recently started receiving emails about my ex-girlfriend's iTunes account - either she hasn't updated her secondary-contact information or this was the most sophisticated and specific phishing attack EVER.

We split over 10 years ago and haven't kept in touch [as an aside, why do people do that? There's a reason why you split up!] but when I got an email with her address details, I thought I'd reach out, say Hi, suggest what the problem might be, and wish her a Happy Christmas.

The silence since has been deafening.

Finally, we thought we were heading for a conversation which every disabled/chronically-ill parent dreads the other day.

As has been mentioned before, my daughter is pretty matter-of-fact about the idea that daddy's legs sometimes get tired - he needs to use a walking stick and is sometimes a bit wobbly. The other week she went with her nursery pals to a nature reserve and when she returned was pleased to report that there was a ride that daddy could go on which was for Distabled people.

So far so adorable - but the other day she started crying asking will she be distabled like daddy when she grows up. We tried to comfort her (she's three-and-a-half so wouldn't understand the concept of something being "statistically unlikely") but she still kept saying that she would be distabled too.

When we comforted her further it became apparent that she actually wanted to be distabled. We asked her why and she said it was because she wanted daddy's disabled parking badge. And walking stick.

She's a 'nana.

Happy Christmas if you've read this far! Let's all hope for a healthful New Year.


Monday 17 November 2014

a very, very, very fine house

all our stuff - in a VAN
And having missed out a whole month we're (sort of) in our new house. 

We were lucky enough to be moving into the house of a friend of my wife's family so were able to move out stuff in gradually, even before we'd signed any rental agreement. 

But at the end we seemed to spend a whole lot of time waiting for our buyer to give us any instructions and we kind of took our feet off the pedal. And then all of a sudden they turned round and said that they had to move in at the end of that week. 

We gnashed our teeth and ranted and raved. But with the sure knowledge that people should be careful what they wish for, we steeled ourselves and said, "You want it? You can have it". 

That week was obviously the longest and most demanding week at work that I have ever had, so most of the shifting and planning fell to Mrs. D and our amazing families. And our old house wasn't as clean as we would've liked it to have been when we handed over the keys [not that it was dirty you understand] but at the end of the day it has gone

As I write, we're still at Mrs. D's folks' while we get straight but it's taking shape. And the new house feels more like a home than the other house ever did. 

It's still pretty frustrating that we were forced out of a house which we owned, and the changes in lending coupled with us being a one-wage family mean that we've had to go into a rental property, but it's so nice to know that whole situation is finally over and done with. 

And the further away it gets the less it bothers us. Onwards and upwards. Can't wait to spend Christmas in our lovely new home. 

My previous MS Society-rattling post got a bit of interest, not least from the charity itself. I'd tagged it in a tweet when I first published the article [on September 29th] so I expected a conversation at least. So I was genuinely pleased to get this a couple of days later:

Since then, the silence has been frankly deafening. The most engaged debate was on this very blog - it would've been interesting to get a bit of a discussion happening with the many other MS writers/bloggers/activists I follow on Twitter, most of whom follow the MS Society. 

Even if they think I'm full of sh*t, I'm interested in the logic behind THAT organisation using THAT phrase on THOSE items. 

I know it's popular among some members of our community but for all the reasons I mentioned I still think it's icky. And I stand by them. 

In my (to my mind) righteous fury, I'd forgotten that it's also the title of a blog written by the person who chooses the "blog of the week" on the Shift.MS Facebook group.

So I guess I won't hold my breath before I get picked for that particular accolade again. 

Monday 29 September 2014

biting the hand that feeds

Long-time visitors will know that I am a bit of an arse and as such I have a number of pet-peeves – including but in no way limited to:
  • People who moan all the bloody time [a bit rich, Mr Domino?]
  • The bloody Spoon Theory
  • Inspirational aphorisms  - “I have MS but it doesn't have me” (oh really? Is this on day two or day three of your steroid infusion?)
This week, I've hilariously added the MS Society to the list...

I fully appreciate that the charity obviously does a huge amount of good work for people like me who have been landed with this crappy condition. But sometimes I do get cross with them.

The other day we received a copy of their Christmas catalogue and there were a number of items sporting the slogan, "I'm not drunk, I have MS".

I admit – in the early days of my diagnosis, I might have had a bit of a rueful chuckle at that. But now it just gets my back up.

By linking being drunk (a potentially pleasant experience which doesn't last forever) with MS (deeply unpleasant at times, no cure at present) are we not belittling ourselves and the condition we struggle with on a daily basis? Some people could see this slogan and think that, if being drunk and having MS are so easily confused and interchangeable – even on the most basic level – well, what's the big deal?

So far so nit-picky.

But my real problem with it is that as a statement it's arsey and juvenile – and not a little confrontational. Yes, some people need educating and they shouldn’t jump to conclusions about people's situations – but is being so "in-their-face" all that useful?

It links to my thoughts about moaning above – like the Sp*on The*ry, this kind of thing just makes us look all whiny, complainy and weak. And speaking personally, if I'm talking to someone and they try to lay something on me in a similar fashion, nine times out of ten I'll make my excuses and avoid them.

I get that this kind of thing could spark a conversation which could allow us to advocate for our condition – but the slogan is on items in a Christmas catalogue. If I presented them to (for example) my mum or even work colleagues, they would think (with some justification), "oh God, Steve's banging on about his MS again – does he really think we've forgotten? We know. We wish we could do something about it."

On the whole, the people who will see this statement (on a T-shirt or a pint glass) are already on our side – we're preaching to the choir, to the people who already have our back. 

It's not as if a t-shirt is going to alter the perception of someone who makes a daft comment when we're staggering down the street – that level of education is somewhat bigger than a bottle opener. And yes I know the conversation has to start somewhere, but is this really as sophisticated as our argument gets?

I'm really not trying to pick a fight with an organisation which does so much good. But I've seen the kind-of passive-aggressive attitude implied by this slogan a bit too much in the MS community over the years. People who almost rear up to offload their symptoms in the opening rounds of a game of Disability Bingo, scoring points when they find out that I still work full-time.

And I'm not denying the cathartic power of this phrase when we're feeling a bit crappy - but on a t-shirt? As a major campaign slogan for (arguably) the leading MS charity in the UK?

One final point which my wife made - if someone is walking down the street and their gait is so poor that they look inebriated, maybe they should be using a walking stick? Or some other kind of mobility aid?

I've talked on here in the past about my initial problems with using my stick. Maybe the MS Society's time might be better spent destigmatising (certainly amongst younger people with MS) the use of sticks / walkers / wheelchairs.

FINALLY finally, here are a couple of alternative slogans – feel free to appropriate!
  • Myelin, Mai Tai… Your round [needs more work but shows promise]
  • I am drunk AND I have MS! [probably my favourite - especially if it says Let's Party! on the back]
  • I have a chronic neurological condition, therefore I drink [a bit long for a t-shirt – maybe a scarf?
And of course, my old favourite - I have MS (it is what it is)

Monday 22 September 2014

monday evening epiphany

A sudden, not-especially profound realisation while I was doing my Rebif injection - not quite 30 seconds ago.

The train of thought went something like:

"Here we are ..."
"... injecting these drugs again..."
"... no one really knows for sure if they're helping..."
"... but at least I'm doing something..."
"... I guess it could be the wrong something??"
"... Still... Better than nothing..."
"... Huh..."
"... Isn't this how most people justify religion?"

So there you have it. My Rebismart injector really does take that long and I am a bit of a smart-arse, even when I can be pretty sure that no one can hear me. 


ADDENDUM - 23rd Sept

It might sound flippant but I realised when I was having that train-of-thought that Medical Science is now my religion (or at the very least fills the gaping void at the heart of me where religion 'should' be).

It might even be the same for you but at best it's a level of blind faith.

SOMEONE told me that doing something [in my case injecting Rebif] would slow down disease progression so I've been doing it ever since. While my relapse rate is [touches wood] pretty much the same as it ever was, I get noticeably tired and I'm a bit forgetful - but then I am very much the wrong side of 40.

Still - at least I have the option (through the twin marvels of the NHS and Medical Science) to do something about it. And it's got to be better than doing nothing, hasn't it?

Thursday 18 September 2014

(don't) lean on me

one of these men could've been me
We had quite a cultural weekend - first up we went to see a performance of FLOWN by the wonderfully named Pirates of the Carabina.

This was one of the maddest shows I've ever seen - one of those performances where you can tell how good at their jobs people are, by how easily you're able to believe that they're TERRIBLE at it.

The blurb calls it "confidently choreographed chaos", which is pretty much perfect. Performers were flying over the audience's heads on bungees as the show "went wrong" all around them. The fact that everyone was able to sing and play musical instruments while they were performing incredible physical feats was just.... teeth-gratingly annoying.

In a good way, obviously.

It was a show where you can get a bit blasé about the things you're seeing - "oh there's somebody supporting their body weight with two contact points on a vertical pole. And they're not even wobbling..." - before you realise just how incredible that really is.

Here's a trailer:

This show was the launch event for the big cultural street arts festival that I've mentioned in the past, which is on in a week or so. This is quite exhausting at the best of times, but especially so when - as has happened - the only other person who works in your department has left suddenly. This doesn't impact so much on the festival, but it does mean that there is a shed-load of work which needs doing back at work at a time when I'm traditionally run ragged anyway.

Long-time visitors may remember that one edition of this festival pretty much led me into a relapse. And I wasn't even trying to sell my house at the same time then...

Anyway - although it is undoubtedly  in the post for delivery at some unspecified point in the future - it isn't showing up if I can help it.

Anyway, FLOWN ties into the new area that we're hoping to move into at work, which is Contemporary Circus. And another part of this is a series of Street Circus events which we've been organising in our local Business Improvement District (BID). It was the last of these at the weekend so we pottered on down for it.

It was great - although I do wonder that it's not really a job for a grown-up. Plus it looks like so much hard-work - effectively each of the guys we saw was performer, narrator and audience development coordinator, all rolled into one!

We were pretty settled on a bench with a picnic lunch, and because we were pretty settled we got fairly involved with a bit of pre-show banter with the perfomers. So it shouldn't have come as a big surprise that the "big healthy-looking young-ish family man" was invited up to assist with one if the acts.

I genuinely didn't know what to do so obviously I got up and made my way onto the performing area, while our technical guy tried desperately to catch the performer's eye with the international "not a good idea" sign.

Anyway, as I made my unsteady way over to him [without using my stick, as I didn't want it to be turned into a joke], he obviously clocked my discomfort and said "Are you OK? Look, if you'd really rather not, I don't want to make it any worse...", at which point I made my excuses and sat back down.

The image at the top of this post is NOT me (although he is clearly another speccy dad of a certain age). I'm so glad I wasn't involved, otherwise we'd have all been on the floor.

Tuesday 19 August 2014

cartoon physics

Man oh man.

This is likely to be one of those moany blogs - I know it doesn't do anybody any good (least of all me) but I can't help myself today!

Long-time visitors will know that my DMT of choice is Rebif - although I genuinely can't remember there being a massive amount of time spent deliberating, the decision mostly being made due to needle-size and visibility.

What a wuss.

Anyway, I've broadly tolerated it well - those pesky flu-like symptoms aside, coupled with a bit of bruising and tenderness when I stick to my favourite injection sites. Which is why I use an iPhone app to track them.

My injections are Monday, Wednesday and Friday - like most (all?) of the DMTs on the market, it's recommended that the injections take place in the evening so you can sleep through the worst of the side-effects.

I've had a couple of experiments (one intentional, at least one accidental) with injecting without taking pain killers, but aside from that (and really, what sort of durr brain consciously goes against received medical wisdom?) I've tolerated it well on the whole.

But for the last couple of months, I've noticed that I've been waking up on Tuesday feeling like I've been run over by a truck, more or less immobile and not exactly the sharpest tool in the box.

I like to think that these symptoms are way better than the alternative (*touches wood frantically as he hasn't had a relapse since 2012*), but it seems like the two-day gap is what's doing me in.

I'm planning to put a call in to the MS Nurses and maybe the MySupport help-line, but I'm sure they'll just tell me to keep on keeping on.

There are probably some other elements at play here - house sale, changes at work coupled with the stress of working in a cultural organisation, illness in the family, living with the in-laws, blah blah blah.

But really - is this the best I can hope for? 

The answer to that - in the cold light of day - is probably yes.

I have a chronic illness with an indeterminate prognosis and the DMT I'm on (one of the front-line choices available) is one I can broadly tolerate. And just a cursory look at the mess of stuff which is happening in the world tells me that this is what is widely referred to as a first-world problem.

But where's my magic wand?

* SELF-PITYING WHINE ENDS - thanks for letting me moan, your turn next time!

While searching for a title for this blog, I came across this Wikipedia page about the Laws and Rules of the Wile E Coyote & Roadrunner cartoons - enjoy!

Thursday 14 August 2014

this kind of music

This blog is just to say that the issue of Open Door (from the MS Trust) featuring me and SwissLet wittering on about going to gigs (along with other articles) is out now.

I must say, however, that the opening line of my bit is shocking - when I saw the proof I was horrified with what I assumed the editor had done.

Until I checked the original document I'd sent over and realised that I really had started it that way. And me an English graduate!

If you want to read it (and really, why wouldn't you?) it's below - I tried to embed this with it open at the page which features my big stupid face, just as it would be if you were to come to my house... but the options don't seem to work.

(the article starts on page 12)

Tuesday 5 August 2014

you ain't seen me, roight?

an Eagle Eyed Action Man earlier today
The more eagle-eyed amongst you may have noticed that a few posts on here have been either deleted or edited.

A couple of incidents recently have shown me that people really don't understand how all this STUFF (the internet, social networking, all of that) works. People are going around with the idea that what they get up to in this particular sphere doesn't reflect on them in the REAL WORLD

I'm guilty of it myself, blithely sharing intimate details of my health in the mistaken belief that I was only sharing it with people who were also in the same particularly-crappy club. WRONG

Similarly, recent posts about our house could have a detrimental affect on its sale - which is going through quite nicely, thank GOD. Yes, we're happily in the limbo of Sold Subject to Contract. Still a way to go but at least something is happening.

We've got a lot of stuff to do so here are the headlines:

My so-called [by precisely no-one] celebrity activist life continues. In recent months this has seen:
  • I've contributed to an article for the MS Trust's Open Door magazine about going to gigs - I don't know when this will be out exactly, but it's very nice to be asked.
  • By sticking my oar in on a conversation that the MS Society started about phone apps to help manage MS, edited highlights from this old post may be featured in the November edition of MS Matters.
  • The MS Trust also got in touch to see if I'd be up for talking to someone from a national drama broadcaster about a potential future plot line in SOMETHING involving a 40-ish bloke going from initial symptoms to diagnosis. I prepared for a 5-minute chat, spoke for 40. 
Longterm visitors will know of my problem(s) with Linked In, officially the dullest social networking site. Anyway, I'm a member of a group called the Association of Disabled Professionals UK and the other day someone posted a link to a really interesting article on DisabilityNow:
I recently read that last year, about 220,000 more disabled people lost rather than found a job. Other research suggests that if a disabled person loses a job, unless they get another one within six months, they are likely never to return to work. For all the talk about improving the work opportunities for disabled people and all the effort and state funding spent, often ineffectively, in trying to get unemployed disabled people into work, there is a revolving door throwing even more out into worklessness.
Read the whole article here.

And finally - just in from "potentially-interesting-but-at-first-glance-confusing-INITIAL-research-findings", people on Twitter and elsewhere have been going mildly bat-shit today about a possible link between HIV and a lower risk of developing MS.

I'll let that one sink in.

It's not yet known whether it's HIV's immune-system surpressing "qualities" which is leading to lower instances of MS, or the combination of drugs used to control HIV.

As a related aside, am I the only one who remembers talk of a lower onset of disability in people with MS who drank alcohol without restraint?

I know this isn't what the powers that be are saying but it's at least mildly diverting to imagine that unprotected sex, needle-sharing and pounding down 40s could be your way to a healthier lifestyle.

It's no more ridiculous than the recent Cancer Research UK fundraising program where people were encouraged to have barbecues.

Someone should have thought that one through, right?

Thursday 10 July 2014

Center Parcs - user review

We recently had a week away, the first time we've been away as a family (just the three of us) since our holiday in the Cotswolds which led immediately into my last relapse. In the two years since, we've been on holiday but always with a rolling cast of (very willing) family members. Maybe we've overreacted but as is probably obvious, it knocked me for six.

After going backwards and forwards about going abroad (potential nightmare, even without a three year old in tow!), we decided to go to Center Parcs.  In the past we've always been a bit unsure about these places - there's something of the Young Christian Camping Activity Weekend about it all. We did look at it when Evie was a lot younger but she wouldn't have been able to do many of the activities. These days, our main challenge is wearing her out! So it seemed like a good idea.

Because I was knee-deep in relapse by the time we drove back from the Cotswolds two years ago, we decided not to travel too far, settling for a week at the Sherwood Forest site.

(An aside - we actually managed to lose AN ENTIRE forest on the way there. But that's another story.)
map of Center Parcs in Sherwood Forest
The Sherwood Forest Center Parcs site is 400 acres. I still really have no concept of what that actually means but it's NOT SMALL. All the lodges are somewhere in those 400 acres, with most or the facilities in the middle. The whole point of Center Parcs is that there aren't any cars on site - you pull up, unpack, and park up all the way OVER THERE.

Because of that, Mrs D called the booking office to see what our options were, having a disabled person in our party.
We were told that the best option for us was to pay a £50 premium to guarantee a lodge in the centre of the park, so we wouldn't have to walk too far once we'd got settled. Mrs D said, "as my husband is disabled, is this really the only way we can be based more centrally?" (response: "Is he a wheelchair user?" Nurrrr....).  

Regardless, no dice. Hmmm - not a great start.

When we finally got there (we lost a FOREST) we unloaded and I went to park up in a disabled bay... then completely lost my sense of direction. I found Guest Services who pointed me in the right direction, but they also mentioned that there was a shuttle bus available for guests with limited mobility.

When Mrs D called to book, there was no mention of this and they are strangely quiet about it in brochures and on the website.

I can understand they're trying to create some kind of Pedestrian/Cyclist Utopia, and shuttle buses bombing around might ruin it, but if I'd had more trouble walking we might have thought twice about booking at all. Knowing that there are OPTIONS might be nice for other disabled visitor, as we could've booked one if we wanted to visit a location on the far side of the site.

First thing to say, 400 acres or no, the map of the Sherwood Forest site is incredibly misleading. In a good way.

Once we'd got settled in, we found that everything was easily walkable, and parts which looked like a good 10 minutes walk were more like 2 minutes away. The landscape in the centre is very flat, and while there is a lot of "CYCLIST ENTITLEMENT" (no cars!), there are predominately lots of smooth footpaths which are pedestrian-only.

We had an amazing time. Being in the middle of the forest was beautiful and we were surrounded by loads of animals (Evie loved this) - there was even a duck pond a handful of steps away from our lodge. There was lots to do but we didn't try to organise too much in advance, which turned out to be a good thing. Although we were busy every day, we still had a really relaxing time. And the subtropical swimming pool is immense, so you need to allow some time to spend in there.

The day before we came home, we went into Guest Services to see about arranging a bus to pick me up in order to collect our car in the morning - check-out was an ungodly 10am and we thought this might be a handy bit of fatigue management - certainly better than walking across the park, driving to the lodge, loading up, driving home...

I called security... and they said that they didn't have any drivers in for the next day. Considering the fact that the arrivals and departures are pretty much all on the same day, this seemed crazy. I explained that the reason I was enquiring about the bus was that I am disabled (response: "Are you in a wheelchair, sir?" Nurrrr....), and then he asked if I had a Blue Badge, because if I did, I could park outside our lodge overnight and load up in the morning.

Again, I understand that Center Parcs is a car-less utopia (and it was one of the most attractive things about it for us) - but it would've removed a lot of our worries about packing up and leaving with a 3-year-old at TEN A.M, followed by an (admittedly short) drive home if someone had mentioned this in advance. Maybe they don't want people to take the piss, which we certainly didn't want to.

AN ASIDE - Evie was quite poorly on the last day and we wanted to get her checked out at the Medical Centre (because there is one - genius) so after loading up we used the car to drive to the nurse and ensure we had a good last day (you can use the facilities all day on arrivals and departure).

ANOTHER ASIDE - as I was loading the car up, a Center Parcs car pulled up to take me to the car park... I was very grateful and felt so sorry for the security guard who'd had to drive over to us. But still - a bit of communication wouldn't have been such a bad thing. (NB there wasn't a phone in our lodge and the mobile signal was non-existent).

(this is only based on our experiences of the Sherwood Forest site)
Our holiday at Center Parcs was absolutely perfect - we had a proper rest while still doing all kinds of exciting things, and came away feeling fully recharged - which is kind of what you want from a holiday, isn't it?

As an organisation, Center Parcs (rightly) shouts about how family friendly it is and we found it all totally do-able with a pushchair - but as there were a number of disabled people and wheelchair users there, maybe they should shout more about how Accessible they are?

There are so many ways in which Center Parcs is ideal for people with mobility issues, which is why it was so disappointing when they got a few things wrong. As mentioned above, the paths in the centre are predominately smooth, so I can imagine they are perfect for wheelchair users - but if disabled people think there are no transport options in and around the site then they might not consider going.

Again I can understand why they might 'soft-pedal' the transport on site, but maybe a question on the booking form about additional needs could trigger a phone-call (or email) from someone to explain the options which are available.

National Trust sites usually have a kind-of manned electric golf buggy available for guests with limited mobility - maybe this might work better than buses and vans at Center Parcs. Better for the environment, too!

We understand that the centre of the park is prime real estate, so the £50 premium makes sense - but to stay anywhere else was not an option for us. The fact that our best option as was to pay the £50 just seems a little "Non-Inclusive" - not asking for special treatment, but as I say, to stay anywhere else wasn't an option.

There are a lot of accessibility statements on the Center Parcs website.

But they're not exactly front-and-centre - you really have to look for them (they're below the fold at the bottom of the page, in a long list in small text - see image) and the onus is on the guest to look and make enquiries.

One of the parts of their Accessibility Statement is a pledge to:
Provide information to guests and prospective guests upon the accessibility of our sites, goods and services in a manner that best enables them to access our facilities and services appropriately.
Well, that didn't really happen for us.

It didn't impact on our holiday to a huge extent, but then our access requirements are pretty low.

We had a lovely holiday and are already planning our next visit. But when Center Parcs gets so many things right with regards to Access, it's just a shame that they don't make more of it.

I'd be interested to know if anyone has had experience of other Center Parcs sites.

I'd ALSO be interested to know if anyone has read this far!!!

Monday 9 June 2014

take care

It's Carers Week at the moment - "an annual awareness campaign celebrating and recognising the contribution made by the UK’s 6.5 million carers who look after an ill, frail or disabled family member or friend".

Following the birth of our daughter and a period of maternity leave, my wife went back to her job at a local arts centre for two days a week. This had always been the plan up until The Child went to school full-time - we're lucky to have two full sets of healthy Grandparents who live nearby and who are only too happy to look after their Granddaughter!

The fact that her return to work coincided with RELAPSE 2012: Electric Boogaloo, coupled with the fact that our daughter is likely to be our only child, subsequently meant that Mrs D decided to step back from her career and concentrate on being a full-time Mum.

My wage is marginally bigger than hers was, plus she thought if she could run the house and do all the boring HOUSE-KEEPING stuff that we used to have to do at the weekend, it would enable me to rest up if required. And if I did feel OK, we would be able to do NICE STUFF as a family.
Obviously, living on one-wage is not without its constraints and issues but the fact is, it works us (most of the time) - we cut our cloth accordingly (but don't often go without).

I don't think Mrs D would ever have called herself my Carer by choice (more of a 1950s Housewife) and my care requirements are (at the moment) minimal - as long as I'm not knee-deep in relapse, that is. And when that's the case (touching wood furiously), the one wage we have coming in could... well, STOP coming in.

That's always been at the back of our minds, so we were intrigued to read about Carer's Allowance in this article in The Guardian last year.

As I'm currently receiving Disability Living Allowance with a 'care' component at the 'middle' level, we found that we did qualify*. Plus Carer's Allowance can be backdated for up to three months if you began caring before you applied.

So do make sure you claim your carer's allowance if you are eligible!

(obviously the Coalition Government - and really, Lord, why are we still here? Is this really the best of all possible worlds?? - is trying to shave off as much as they can from the benefits budget - so some or more likely ALL of the above may change over the next year or so.)

 * AN ASIDE - I was instructed by numerous health professionals to fill in my application for DLA by talking about my symptoms on the worst of days - knee-deep in relapse, unable to wash, walk, prepare and carry hot drinks, etc. So that's why my care component is slightly enhanced.

To finish, this is one of my favourite songs of recent years!

Wednesday 28 May 2014

circle of truth

Another brilliant film from the people at Shift.MS to mark World MS Day - fantastic to see a couple of famous faces in there too!

Watching this, I really felt for Gen - I wish I'd kept schtum, rather than bursting into tears in a staff meeting.

Ah well, 20/20 hindsight is a wonderful thing.

But also I recently had to do something very similar in a session at work - the horror, the horror...

Anyway - enjoy!

'Circle of Truth', directed by David Allain and written by Matthew Edmonds, explores some of the challenges that people with MS face when deciding whether or not to disclose their diagnosis to their colleagues. Produced by Rankin Film Productions, the cast includes Simon Day from The Fast Show, BAFTA-winner Lauren Socha, and Skins actress April Pearson.

Friday 9 May 2014

this isn't happening

Ivan the Terrible's hair shirt (16th century). The tsar wanted to die like a monk.
Warning: this post contains language.

You find me today in a typically self-loathing mood. The main reason? WALKING INTO WORK. Again.

I'm currently averaging one day a week walking in. It's really not enough. But I know that I'll always find an excuse - "ooh, it looks like rain", "I didn't sleep well last night", and so on and so on..

To be frank, that's all bollocks.

The main thing that stops me walking into work is fear of unlikely events happening which were talked about enough in my CBT sessions a couple of years back.

Knowing how unlikely these events are doesn't mean that I can switch my brain off. The old drip-drip-drip of unhelpful thoughts can keep any of us indoors.

The day I walked in this week I had a Board Meeting - I finished at 8pm but I felt great all day. Walking home with a friend, he actually struggled to keep up with me.

I know the benefits. I KNOW the benefits.

I just need to bloody crack on with it. And posting this to you is - in a sense - a way to embarrass myself into doing it.

To offer a bit of much-needed perspective, here's a poem which I picked up on Twitter earlier. One of my old Freelance jobs was to do with Literature Development in the East Midlands, and part of that involved me working with Jo Bell. She's a poet and was formerly Director of National Poetry Day - as a boat-dweller, she's currently Canal Laureate for the Poetry Society.

As I mentioned in my last post, any song lyric can mean something to anybody at any point in their lives - see great misunderstood songs of all time like "This Land Is Your Land", "Born In The USA", "You're Gorgeous".

(although Ms CrankyPants I'm still waiting for your interpretation of "I Can't Go for That (No Can Do)")

And the same can obviously be said about poetry.

But this poem - "This Isn't Happening" by Anthony Wilson - is a remarkably accurate portrayal of what happens inside your head when you're handed a medical diagnosis which your brain cannot and will not compute. It certainly took me back to my own.
This is not happening. It happened. Past tense.
One day, every day, eight years, a minute ago.
When they told me, they said, they are saying.
Mr Wilson. Anthony. (Tony). Darling. My lover.
It looks like. If you could. You have great veins.
Here is a gown. Here is a bag. Here are your pills.
Yes, you will. Yes, you will. It will, yes. All of it.
We don’t know. (We will never know). We don’t know.
No. Because. Maybe your genes. More likely your.
It’s best if you. If you can. We advise it. Everyone.
One day, that day, this, after another, today, May.
I am not angry, was not, shall not be. But I am angry.
Today, when they said ‘Actually…’ A minute ago.
With perhaps and maybe. Not No. We love Yes.
Yesterday. When it happened. (Present tense). Now then.
It left, it is leaving, it never. I am still waving goodbye.

(view the poem on Anthony's website)
Anthony was diagnosed with non-Hodgkin’s lymphoma, a cancer of the lymphatic system, at the age of 42. Thanks to him for being gracious enough to let me share this here.

Thursday 1 May 2014

the perils of shuffle

My introduction to the world of blogs and blogging came in the "halcyon" days of the mid 90s. I can't remember the first ones I read but my main interest was the world of the MP3 Blog - how curiously dated that sounds now!

Songs from sites like Bubblegum Machine and Spoilt Victorian Child are still in my collection - either the original files or because (as was often the case) I bought the music in a Real Format.

These sites had something of a sharing, curatorial ethos - similar to the old Compilation Tapes I would force into the hands of friends and potential / actual girlfriends. The blogs seemed to be more generous and personal than simply banging a complete album into a zip file for anyone to download (although it has to be said that those sites have their place too *hem hem*).

Anyway, I persuaded the other members of my band to do one called Domino Rally - as a group of fairly young men with very few responsibilities we had a healthily competitive attitude to finding and sharing new music. And - my logic went - it would enable us to promote our band as people with interesting opinions and taste.

We started the blog in 2005 - our last album of new music was released in 2004 and we played our last gig in 2006. So that worked..? But the blog carried on for a while, even if it was eventually only me posting on it

For reasons too long to go into here, I deleted every single post and comment in 2009.

And for reasons unknown to myself, I've been spending a fair amount of time uploading the posts again...

As part of that, I'm creating a Spotify playlist for most of the songs and it has been really nice to listen to them again and recall a time when music was still the main focus of my life.

This is a song which I heard for the first time in an age (my original scintilating prose is here):

Now I know full well that I was tired and emotional (a plateful of MS Fatigue with seconds) when I heard it. And I also know that any song can be made to mean ANYTHING to ANYONE at ANY POINT in time, depending on what you read into it. But the lyrics really stopped me in my seat the other day:
Oh, just want to push somebody
Your body won't let you
Just want to move somebody
Body won't let you
You want to feel somebody
Body won't let you
Who, who, who do you talk to?
Who do you talk to?
Who do you talk to?
When your body's in trouble
I guess I was having a physically frustrating day!

On a similar musical tip, I was shuffling away quite merrily at home when this song came on.

A beautiful song. The album this comes from was released around the same time as my diagnosis and this song in particular was in HEAVY ROTATION on BBC 6 Music. While I was being cheerily stoical about my diagnosis, my soon-to-be wife was trying to process it all for herself.

I know that she found this song comforting and not-a-little cathartic at the time. It still makes me sad now, but it has a soothing, almost uplifting feel to it. Like looking out to sea and feeling that your problems don't really mean all that much in the great scheme of things. I think it helped Mrs D come to a feeling of acceptance.

I remember we went to see Richard Hawley at Nottingham's sweatiest venue the Rescue Rooms shortly after - it was nice to hear a man with such sophisticated, honeyed tones greet the audience with "F*ck me, there's a lot of you!"

Thursday 17 April 2014

whining about walking AGAIN

My recent post about parking got some interesting feedback on Twitter from the MS Trust and MS Society. Also the guy above who - and I may be being a tad oversensitive - seemed to be accusing me of some kind of sense of entitlement.

Yes, it might be my choice but I sometimes don't have a choice about how I travel to work - sometimes if I want to get to work on time and do a good job when I'm there, driving is the only option (and one which I really don't want to use).


The following week I managed the walk on Monday and Tuesday - I have no idea when the last time was that I managed to walk two days on the trot.

But by Wednesday I was really feeling it. The week previously a colleague had mentioned that I could probably park in an alley-way at work, so I decided to try that.

With one thing and another, my colleague had neglected to tell me that this wasn't going to be an option every day. So I found myself having to find a different space a couple of hours into my working day.

I went 'round the corner and noticed a sign like this - something about the wording struck me as a bit odd, so I returned to work and got on the City Council's website. Where I found the following -
In Derby, Blue Badge holders have
Free and unlimited parking in: 

  • areas covered by on-street charging and limited waiting 
  • areas covered by residents-only parking schemes
So basically - as long as I see one of those signs, I can park all day for free, without having to move my car every three hours. I called the Council and they explained to me that this was the case.

Yay... I guess...

Except since last week, I haven't walked in once.

Today was the first day I managed to do all my many necessary (?) checks and stops:
  • have I had a wee?
  • have I taken my Solifenacin Succinate, to prevent needing another wee?
  • have I got my Orthotic Stocking and walking stick?
  • one last wee?
  • have I had a poo? 
  • now wash your hands!
  • is your bag ready? (many thanks for the sandwiches, Mrs D)
  • what about one last try at that wee, JUST IN CASE?
Which basically meant that I got to work at around 9.15 today - not a massive problem and people do understand.

But the walk in this morning was SO ridiculously hard - I really struggled with lifting my foot and by the time I got here I was utterly banjaxed.

So today's lessons:
  1. If you have a Disabled Person's Parking Card, make sure you understand the ways in which it can be used - when I think about all the time I've spent driving home at lunchtime when I could have stayed in one place all day...
  2. Don't underestimate the benefit of a decent night's sleep - ours has been interrupted pretty much every night this last week (not the lovebirds, other stuff)
  3. If you try to get more active (the old "Use It Or Lose It" argument), for God's sake keep it up - I really feel that I've allowed myself to retreat a couple of steps, just by having an easier option. 
And if you promote a post in order to get a reaction from people, you've got to be prepared for whatever that reaction might be.

Either that or stop putting things online!

Thursday 3 April 2014

social mobility, where art thou?

So the ongoing saga of 'Steve Getting to Work' has taken a new turn recently.

I've continued to walk in occasionally but sometimes it's just not going to happen (we all have those days) so I'll take my car and park across the road for my designated 3 (and a bit...) hours.Then I'll nip out for lunch, come back and park for the afternoon.

This can be particularly useful on days when I have meetings around the city - it's bad enough going to meetings without worrying about being a stumbling, sweaty mess (or worse) when I get there.

The sign at the top of this post appeared in all Derby city council-run car parks at the start of March. I've known this was coming for a while, from about the time that I had to pay for my three-year Blue Disabled Persons Parking badge - £10 for free parking is a pretty good deal.

But no more.

I called the number which trumpeted 'discounted season tickets' - and it isn't even a season ticket.

It's a (free) card which you can flash at the ticket machine which gets you 20% off your parking.

(Annoyingly to get this, you need to take your current Blue Badge to a different car park, which has never offered free parking for disabled drivers - or you could display your Blue Badge and park in the disabled bay across the road - but then you need to take in your Blue Badge to get the discount card... )

Okay here comes the Maths:
  • A regular 12-month season ticket for my chosen car park is £830.
  • The all-day parking charge is set to rise to £7.10 - with my 20% discount, this would mean a daily cost of £5.68
  • Daily charge times five-days a week for 48 weeks(ish) makes a rough annual cost of £1,363.20
So obviously a regular season ticket is a good deal.

But why advertise discounted season tickets when they don't exist?

I've always had a problem with people who view Accessible Car Parking schemes as some kind of perk which we are lucky to enjoy (some visitors may remember this from a closed-group on LinkedIn a while back).

As I wrote on the MultipleSclerosis.net blog earlier this year;
I think of [Accessible Parking] more as a LEVELLING OF THE PLAYING FIELD.

For example, if somebody without a health condition like MS wants to go shopping, and they live close to the city centre (as I do), they have a couple of transport options – they can drive or walk in. If I tried to walk to the shops, I’d be exhausted before I’d even begun to start complaining about having to go shopping.
My Blue Badge is still a total life-saver and I can still park on the street at various places around Derby - but walking in to work is going to have to be the favoured option while we're still living in the city.

Has anyone reading this had a similar situation where they are?

Wednesday 5 March 2014

as we go up, we go down

So my MS MOT was as exhausting as always. Who knew sitting in a hospital all day could be so tiring!

We got there in enough time to grab a coffee before we made our way to the waiting room to do some GRADE A WAITING.

For some reason they always have a TV tuned to a programme which features somebody you'll never meet buying (or selling) a house (or an antique) that you will never visit (or see). If you're really unlucky it's a mawkishly sensationalist programme about somebody you'll never meet having some kind of 999 Emergency.

The neurologist was obviously running behind because the nurse asked me if I wanted to see the physio straight away. I didn't have anything in particular that I needed to say to her but it beat the heck out of sitting in the waiting room.

We had a quick chat about my intermittent adventures with walking and swimming and the benefits thereof, before she had a quick look at the stick which she had given me last time. She thought it looked a bit worn and rickety so she toddled off to get me a new one. Very nice!

Then it all started to go a bit wrong.

The main thing I get from these sessions is a talk with one of the neurologists - to talk about treatments, future developments, and to check that the drugs I'm on are the right ones.

But the door we entered was marked Registrar. Now, this is probably a very high pressured position, requiring a dizzying amount of training, education and commitment. I'm not belittling it and I certainly couldn't do the job.

However, this particular guy took TWO mobile phone calls in the five minutes I was with him - at one point he sent a text message while I was answering one of his (borderline incoherent) questions.

Me and Mrs. D just goggled at each other. During the 2nd phone call, she walked out to find a nurse in order to make sure we could talk to someone else as soon as possible.

When he got off the phone (2nd call) I asked him to turn it off but there was no point as he was rapidly winding up our chat.

The NHS is a wonderful (if woefully under-resourced) thing. And the team was obviously under-staffed on that particular day.

But this is the ONLY chance I get to talk to a member of the team from one year to the next.

Obviously I can call the (fantastic) MS Nurse team anytime, but often then I'll be in the middle of a suspected relapse. Advances in research and / or the latest medical interventions are not at the top of my chit-chat list.

We eventually had a really good talk with the head neurologist. In summary:
  • Rebif is still one of the first-line treatments they prescribe and as I'm tolerating it well (and because it has been two years since my last relapse with no new symptoms of note), there's no real need to monkey about with my treatments. Most of the newer treatments are designed for people with much more advanced symptoms.
  • If my Disco Legs continue to plague me, I could stand to increase the Gabapentin dosage (I currently only take 300mg a night).
  • We had a good chat about Vitamin supplements (basic advice: FILL YR BOOTS WITH VITAMIN D)
  • Also my most recent blood tests (if there are no family members reading this, I'm a little bit anemic - if I'm related to you, EVERYTHING IS FINE)
So nothing new. But it was nice to hear it from the top.

If we'd have left after seeing the Registrar, we'd be thinking what was the point?

Monday 3 March 2014

life in miniature

Example Doll's House Walking Stick
My daughter's current obsessions are:
  • Mr Men books (particularly Messrs Grumble and Forgetful)
  • On-going Kermit obsession (YAY!)
  • Doll’s houses

Particularly my wife's old doll's house, which they are spending a lot of time fixing up (with Granny). The amount which you can spend on Doll's house bric-a-brac is frankly astonishing. But the best place to get new stuff is our local Sue Ryder shop – so that’s something good.

One of her last purchases was a family and some bits and bobs of furniture, which included a hat stand with umbrella and walking stick.

Evie spent a fair amount of time at the weekend trying to get the 'Daddy' of the family (surprisingly effeminate, actually) to hold the stick.

That was a bit of a lump-in-the-throat moment, but on reflection I think it's pretty cool. She's very matter-of-fact about getting my stick for me before we walk anywhere, and I think she has a healthy awareness of the NORMALCY of DIFFERENCE, if you follow me.

Her favourite TV show is the brilliant Something Special, which is a lovely show for kids with learning difficulties. They also sign a lot using Makaton on the show, something we find ourselves doing too!

(NB Justin is worryingly ubiquitous as far as kids TV is concerned but Something Special buys him a lot of grace)

She's also matter-of-fact about the fantastic presenter Cerrie Burnell – I still can't believe that some parents complained about her when she started presenting, rather than using her to educate their kids that not everyone is the same.

Gah – people.

I had my annual appraisal at work last week. We never discuss my health in anything but the most rambling and discursive manner – so when I got the notes back, I took offence to the section which said Steve "had a good year physically and although feels tired at times manages this well".

I know, he means well. But it really has nothing to do with my work over the last 12 months. I asked him if he gets tired.

He removed the offending line from my notes.

As an aside, Evie also accepts that Daddy's legs sometimes "get tired". But she’s not yet three years old.


HOUSE news – ours will be on the market by the end of this week. There has been much STUFF happening with the neighbours but I'm aware that I don’t want to endlessly bang on about it all the time. I might try to do a compendium of recent activity. Or I might wait until we move. Who knows?

Tomorrow is my annual MS MOT with the neuro team and MS Nurses at the Queen's Medical Centre – should be fun (and/or physically / mentally draining).

Friday 21 February 2014

fun times in babylon

Father John Misty - "Fun Times in Babylon"

The Father John Misty album has been on heavy rotation round my way since I bought for my brother a couple of Christmases ago - what can I say, it's the gift that keeps on giving.

Anyway, a thought popped into my head this morning - "Whatever happened to Chris?" 

A little context may be required.

At my school, I wasn't one of the cool kids and I wasn't one of the weirdos. I was more in the middle with friends on both sides - probably the safest way to be.

I was into odd music played by bands with strange names and I liked films and enjoyed reading. Plus I was actually in a band at the time - I played my first gig at a pub in Nottingham (The News House - it looks much nicer nowadays) when I was 14.

Growing up in a staunchly working class post-industrial town, that kind of thing really doesn't impress anybody (it was all about your precocious bum-fluff moustache and your provisional driving licence at my school).

Eventually of course, my ship came in when I got to college. It was here that I basically invented the persona which I carry to this day - The Me That Makes Me Me, as it were.

Basically, this was the archetypal Revenge Of The Nerd. And now I was cool I was going to be snarky and clever and cutting and endlessly sarcastic. Sounds awful but it was actually great fun. Plus I even kissed a girl during this period.

I ended up doing three years at college, eventually getting five A-levels - at the time, no-one tells you just how useless these bits of paper will be in the real world.

Anyway on one of my final year courses I met Chris. He seemed really young (I guess he was) and he was into laughably shit music. At the time I was renowned for my compilation tapes which I used to slave over endlessly - so for some reason I took Chris under my wing (not at all patronising, eh?) in order to show him that THAT was shit but THIS was the good stuff.

(If it's any consolation, I'm embarrassed to write all this down)

We hung out a lot - he even persuaded me to see Pavement's first-ever UK gig, which for some unknown reason was in Derby in 1992. So I wasn't all that cool after all, was I?

Anyway we drifted apart as people do. And in May of 2012, Chris sent me an email out of the blue - he'd been chatting to someone about obscure bands (Beat Happening, Codeine, Galaxie 500) and as my tapes had introduced him to them, I'd popped into his mind so he wanted to reach out. He was living in London but was frequently back in 'the hood' (as we never call it) if I wanted to hook up.

I responded:
what a blast from the past!

great to hear from you - i tried to listen to some Codeine when they announced the reunion dates, jesus they're depressing - it's no wonder i had no luck with the ladies! i was just a big gob with strong opinions about music, not changed much since then.

anyway, you dragged me along to see Pavement's first ever UK gig at the Wherehouse - i think that makes us quits.

life is good, the only dark cloud has been my diagnosis of Multiple Sclerosis about 7yrs ago - doing ok on the whole with it but it's always there - getting old sucks yeah?
... followed by some innocuous guff about being married and the family. I've just read the whole email through and it's fairly light and frothy (apart from the MS bomb, obviously). I think the day I sent the message was one of the first days I was back at work following Relapse 2012, so my health was very much in my mind.

So I clicked send and expected him to get back in touch.

And then nothing.

I'm friends with his younger brother on Facebook (he worked in a cool record shop in town) and last year we had an exchange about some gigs we were going to see*, so I nudged him about his brother - still nothing.

I don't really know why he popped into my head this morning - we weren't that close so it's not as if I'm devastated by his lack of contact. And my MS was quite the turd to drop in our conversational punchbowl.

But it got me thinking about the ways in which different friends have reacted to my illness - and this is not going to turn into one of those YOU DROPPED ME WHEN YOU FOUND OUT ABOUT MY CHRONIC ILLNESS SO NOW I HATE YOU AND I'M BETTER OFF WITHOUT YOU-type posts.

I'm really lucky - the worst that happens is one of my friends pointedly asks me "[pause] so... how are you doing?". It's not that unusual, but he asks it in the middle of a conversation, even after asking how I am at the start, so I know what he's really asking about. Yeah, I know - sucks for me.

At best, when I'm deep in relapse another friend will make a point of checking in almost every day, bringing books / DVD boxsets / music or just dropping by to shoot the shit - all are greatly appreciated.

My point is, I've been incredibly lucky. And it can't be easy for the friends who I've shared time with to adjust to the changes in me - however small I think they might be, I am now fundamentally a different person because of them.

Yes, some people have drifted, but I read something by Oliver Burkeman a while back which said that we shouldn't feel bad about friendships tailing off. Maybe they have a shelf-life - it's ok for that section of your life but not this one. And that's totally natural.

If you're reading this Chris, I hope you're doing ok.


(* Me - Shellac. Him - the reformed Pixies, whose original line-up I saw in Nottingham in 1989. See? I'm still a massive nob about music! I'm lucky to have ANY friends!)

Thursday 6 February 2014

privacy settings

I had an interesting conversation with my brother over the festive season, which has been on my mind ever since. But the reason for me finally getting this published was a thoughtful, kind-of related post on SwissLet's blog.

I blog here under the name stevedomino - this is an overhang from my days as a member of Derby's burgeoning still-born "indie" "music" "scene" and my old band Johnny Domino - since then it has been my user name of choice.

(Incidentally, my previous band was called - for reasons too arcane to go into here - The Millers, so for that period I was sometimes legitimately referred to as stevemiller - the days were long, dark and seemingly endless round these parts...)

Anyway, you don't have to be Nancy Drew to find out my actual full real-life name - even if you don't listen to revealing radio interviews (where I also reveal the name of my employer), a quick glance at my Twitter profile will provide the key to my not-so secret identity...

WARNING: this man may crack under questioning
Plus the linked posts which I write for MultipleSclerosis.net are all under my own name.

I have tried to be careful about protecting the identities of people in my life (mostly... when I remember...), particularly my wife. But I know that in the past I have given away such tidbits as this just through being a bit clumsy.

The first MS blog I read which didn't make me want to GOUGE MY OWN EYES OUT was Jackie Zimmerman's MSunderstood (no longer online, unfortunately) - here was a writer who didn't take anything lying down and wasn't ashamed to talk about the (often humiliating) symptoms her conditions threw at her - plus she continues to be a constant force for good in the universe.

The fact that Jackie (and her colleague Dana) used to write in their own names led me to do the same when I started a blog as a way to sift through thoughts in my head which were mostly to do with my health.

Plus I don't know anyone my age (or even in the same basic age-ly ball park) with MS in the Real World.

The idea that the blog would find an audience - however small - was genuinely the last thing on my mind - if it was otherwise, I'd have chosen a blog title without a MILD SWEAR in it.

Somewhere along the way, I became convinced that this was a form of activism - a way of presenting a different face of living with MS than the one which is traditionally in the media.

As such, my logic went, why do it in anything other than my own name? I'm certainly not ashamed of having MS, nor am I particularly shy about "coming out" in person.

Now I know that there are many MS bloggers - certainly more popular and entertaining than I - who write behind user names and avatars, which is entirely their prerogative.

And I don't judge in any way, nor do I assign my own potential paranoias or shames to them. God knows, I know that I'm my own unique mess.

Anyway, over Christmas I was talking to my brother and he said that he'd read something on this blog, and that he thought it was weird that I would put it out there in the public domain for strangers to read. Why didn't I just talk to people?

(He also totally doesn't get Twitter)

And for some unknown reason, the fact that he'd been reading the blog royally weirded me out and I didn't really know why.

Was it just because he's someone that I know intimately in real life?

It's not as if this blog is a no-holds-barred literal representation of every crappy symptom and/or humiliation, because (a) that would be dull and depressing, and (b) there are some things which I'm uncomfortable being "out there".

So, it turns out that in some ways, blogging under my own name / image actually prevents me from being as honest as I could be about my MS.

(Weirdly, this was not the conclusion I expected to come to when I started writing this post!)

Anyway, my brother said that he didn't want to appear on this blog. So apologies, dear brother...

... although I did say at the time that I would use the conversation we were having in a future post.

Friday 31 January 2014

your call is very important to us

Earlier this week I was called at home by someone doing some research on behalf of the MS Society. They wanted to get some feedback about various services that I'd accessed.

Now obviously I'm DOWN WITH THE CAUSE. But they called at half-past six. I'd not long come back from work, my parents had just brought Evie home after looking after her all day, and we were in wind-down before wine-time mode.

So I asked if they could call back. They said fine.

At half-past six the following night they called again, right in the middle of the wind-down once more.

I explained that I'd been through this the night before and that I'm more than happy to do any survey for the MS Society, but could they email the questions to me?

No, it had to be done over the phone.

I explained to the (perfectly lovely) caller that this wasn't ever going to be a good time of the day to speak. Work, child, etc.

It's (mostly) a finely-tuned machine (sometimes). 

So she said (again, she was perfectly lovely about it), "Ok, I'll call you in the morning".

To which I replied, "But I'll be AT WORK". 

I'm probably being insanely over-sensitive. And I know the society published findings which said that “It is estimated that between 23 and 32 per cent of people with MS are in employment”- so basically only a quarter of us are still in any kind of work. 

But still it saddened me that the person calling - on behalf of the MS Society (not from them) - would make the assumption that, if a person has MS and they're talking about work, there's NO WAY that work will be full-time. 

I've been a bad mood about this ever since - if this is the attitude of people working in the name of one of the biggest MS charities in the UK, will the fact that people with MS don't feel able to remain in employment become a self-perpetuating prophecy?

People who are newly diagnosed could read these figures and go, "OK then, I might as well give up now". And I do appreciate that some people have a considerably greater level of disability than I do currently.

But still, it's not THEIR FAULT that they're disabled. 

What is society going to do to make them feel that they have a RIGHT to contribute and be fulfilled, doing whatever it is they want to do? * 

In my head I keep going back to the different models of disability - it's not the individual's fault, it's the Disabling World. 

(* the irony is that I HATE work, have never a had a completely fulfilling job, and would happily jack it all in tomorrow if my numbers came up. But still... Raah!!) 

I'll stop working when they stop issuing plush anniversary box-sets of key musical-texts of my young adult life - it's not going to buy itself now, is it?

Friday 17 January 2014

manifest destiny..??

So the walk into work happened today. And it was fine. As I knew it would be.

I feel much more energised and mentally switched on at work today. As I knew I would do.

It's genuinely the case that, if I'd not written yesterday's blog with my "non-resolution", I probably would've found some excuse not to bother.

So Thank You for giving me the motivation. I would've felt like a loser if I'd given in to the niggling little voices in my head!

The fact of the matter is, I've noticed that my legs have been getting increasingly weak, and the nighttime DISCO LEG spasms have really been getting crazy.

If a little bit of walking can help stave off the (inevitable?) progression of my MS, then it's kind of a "use them or lose them" sort of situation.

Plus, it'll give me more motivation to jump around like a loon to this song with my daughter.

Thursday 16 January 2014

the art of peer pressure

You'll be pleased to know that I don't believe in New Year's Resolutions – so I can’t make one of them "blog more regularly"...

Anyhoo, how've you been? Good I hope. Here's the headlines:

Christmas (remember that??) was great – we've finally got our head's round managing the time we spend with our (lovely) families at Christmas – they just want to see Evie but we need to keep her in a bit of a routine for our own sanity. I think we got it right this year, and had some lovely days out just the three of us.

The image above is from one of my favourite days, when we had a lovely walk around nearby Kedleston Hall (20mins drive away from us).

[section removed]

Now a little confession - for one reason or another, I've been neglecting to make the walk into work recently. We're still going for walks as a family at the weekend but long-time visitors may remember what a big deal I made about this seemingly simple aspect of my day last year.

I'm determined to get back onto it ( however it is difficult to get motivated when you've had a disturbed and stressful night's sleep) so this another one of those things where I publish a blog in the hope that it will kick me up the arse and get me to stop making excuses.

I will walk into work before the end of this week - it's strange how terrifying it is for me to type it!

But on the day after a study finds short bouts of moderately intense activity can have a big impact on tiredness levels of people with MS (which let's face it, we all know anyway), what have I got to lose?

On top of the short burst of "Yogo" I do with Evie in the morning (she's surprisingly persuasive), I'll be Supersonic by year-end.

(But still, NOT a resolution).