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!

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)

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?

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

BOOKING
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).

CONCLUSION
(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!!!

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!

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.

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.