where have I been? the answer will SHOCK you

That's my first attempt at clickbait. Sorry, Little Ms D spends a lot of time watching crap on YouTube! How am I doing?

Anyway, it's obvious that things have been quiet 'round here. And as I write this I'm waiting for my next Tysabri infusion to start. So strap in for a long post. 

TL;DR we're moving house.  

To start I'll transport you to a simpler, more innocent time: December 2019. Did we realise how happy we were? Such innocence. 

At this point our landlady informed us that she wanted to sell the house we were living in. 

If you remember even further back, we needed to move into this house after a series of non-physical confrontations with our wanker neighbours. It was quite galling that we were forced to step off the property ladder but, seeing as I was fired/let go/made redundant from my job a couple of years later, this "temporary" move actually worked out ok for us. 

So we understood why our landlady wanted to sell up. And she did get us out of a hole when we needed to move quickly. 

But then 2020 happened! And the housing market stopped, so she wasn't in a rush to do anything. 

So we basically spent all of that year trying to either buy the house or persuade someone else to buy it so we could continue renting. We weren't able to get a mortgage because my business had only been going for a couple of months by this point. 

However, in January of this year, after a number of near-misses, we had to admit defeat. So since then we've been looking for somewhere else to live. And, as I'm sure you can understand, it has been pretty stressful and all-encompassing. 

It hasn't helped that the rental market has gone bananas. We've seen houses and while we've been waiting to arrange viewings, someone has swooped in and got it based on photos. Which isn't an option that is open to us, considering my access requirements. 

But we have managed to find somewhere to live. And it's another short move! Let's look at our past movements:

Mr, Mrs and Ms D - relocation, relocation, relocation

• living in a flat with arsehole late-night DJs, to...
• three-storey townhouse - then moving SIX DOORS to...
• purchase another three-storey townhouse, with arsehole neighbours either side - brief relocation to...
• move-in with my in-laws - moving ACROSS AND SLIGHTLY UP THE ROAD to...
• temporarily (*coughs* seven years) rent

And now we're going ACROSS THE ROAD and SLIGHTLY FURTHER-ER UP. 

Now this should be a really, GENUINELY temporary move before Little Ms D moves up to big school. By which time, we'll hopefully be in a position to buy a house. 

So that's where I've been. Are you as shocked as my title hinted?

employment, work culture and MS

One of my favourite podcasts is Beyond Today from BBC Radio 4. The idea is that they talk about one topic from the news every weekday - as they put it, they ask one big question about one big subject.

A recent episode was called "Is the way we work bad for us?"

This was prompted by an office-space company called We Work which has a kind-of Utopian vision of the future of work. But some people say that it creates a culture of 'hustle porn' - people needing to be seen to be busy and competitive and be defined by the way that they work.

This episode also looked at how the quest for perfection has infected many aspects of modern work culture, leading to a crisis of burnout among young people.

I really enjoyed this episode of the podcast (to be honest, I enjoy them all) but I did spend a lot of time thinking "Tell me about it!"

my work history

I was diagnosed with MS 14 years ago. At the time I was working full time in arts marketing, something which I managed to keep doing until December 2016.

I don't want to go into how that played out again - my employer was basically pretty understanding about my health (up until the point when they weren't). But eventually it became unfeasible for me to continue.

Like most people with MS the main thing I deal with is fatigue. The act of leaving the house in the morning - making breakfast, washing, shaving, making lunch, travelling into the office - was one of the most exhausting things I'd do each day. Meaning that I could be wiped out even before I'd made it into work.

Even so, when I requested a day a week where I could work from home (something recommended by a Community Occupational Therapist), I was expected to tell my boss exactly what I was doing and what I had achieved on that day. My remote working was viewed with suspicion, despite the fact that I'd been in post for over eight years at this point.

Since leaving that job I've had a handful of short-term contracts but have struggled to maintain any consistent level of employment.

For a recent freelance contract I'd been open about my health during the recruitment process. Even so, I was expected to go into the office on most days, despite the fact that all of my role could've easily been done remotely.

Why is remote working still viewed with suspicion in the U.K.? Particularly as the primacy of an office-based work culture can effectively keep disabled people and those with a chronic illness out of the workforce? Never mind any macho hustling!

the way forward?

Interestingly, friends in America have shared news stories and links to organisations that seem to point to a more realistic path. See THIS LINK for a story about the value some US Businesses are placing on disabled workers and remote working.

It should be fairly standard practice - but in this country at least businesses might talk about social responsibility and reducing their carbon footprint (for example). And it doesn't seem to make a difference to working and recruitment practices.

The people I know who are either disabled or have chronic illnesses don't want to sit at home living off benefits (despite some media portrayals!). I want to support my family and I also want to keep my brain active. But work will have to fit around my illness and hospital appointments.

Kathy at FUMSnow.com is just about to launch her Patients Getting Paid course, which will help chronically ill people to find legitimate work opportunities that accommodate their health conditions, wherever they are in the world.

A recent FUMS podcast episode was about Chronically Capable, "a platform that strives to connect the chronically ill with meaningful remote work and flexible employers".

This sort of thing is amazing. Why don't we have anything like it in this country?

my (future) glittering career... hopefully

I've really enjoyed the work I've been doing editing the FUMS podcast. And y'know what? I'm really good at it.

Some of the interviews necessarily come with audio issues - dodgy sound quality, even moments where the audio has totally dropped out. I've been able to fix these to the extent that even I can't see where the edit is. I've also started creating additional bits of background music when it's needed.

With that in mind, and with the support of Kathy at FUMS and Jackie (Queen of GSD), I'm currently exploring the idea of working as a Podcast Editor (see the lovely website Jackie designed for me at https://podcastingeditor.com).

If I can make this work for a while it will be perfect for me. So if you know anyone who might need my (very reasonably-priced) help please get in touch!

my PIP story pt.2

I hope these posts will be encouraging for anyone going through the PIP application process. I am NOT an expert.

Read Part One here 
--

5. Preparing for an assessment

This article is a pretty chilling depiction of the faceless bureaucracy of a PIP assessment: https://www.benefitadvice.org/pip-medical-assessment.html - particularly the Computer Says "No" section at the bottom of the page.

FULL DISCLOSURE
I honestly don't know what you can do to prepare for an assessment. I was lucky that both of mine were in my home. But for my second assessment - when I'd included details of adaptations that had been fitted around the house - they didn't even look around.

Although it couldn't have been used in a tribunal, I'm glad we made an audio recording of the assessment. At the very least I could play it back to ensure that I hadn't misremembered what we actually did say when we were able to go through the tribunal papers - which included their notes from the assessments.

But even so, the things that we said were twisted, misrepresented, or flat-out ignored.

Maybe I was unlucky. But all signs would imply that this is par for the course.

6. Take it to the bridge… I mean, the tribunal

my ACTUAL tribunal papers

After an application, an assessment, and an unsuccessful Mandatory Reconsideration, now was the time to request a tribunal.

At this point the case was passed onto HM Courts & Tribunal Service. Shortly afterwards I received a huge wodge of papers - forms, assessment reports, and decision notices for BOTH of my applications. 185 pages in total.

Although they were two separate things, I think they did this to show the tribunal service that, "This person has applied and been assessed twice. In our opinion they are clearly taking the piss."

At the front of the pack there is an official response to the appeal from the DWP:

I've considered all the available evidence and considered which descriptors apply for each activity, taking into account Mr. Woodward's functional ability. This includes the activities Mr. Woodward has disputed and those which he hasn't. I agree with all descriptors included.

I oppose this appeal and ask the Tribunal to dismiss the appeal and confirm the Secretary of State's decision.

Now. This scared the bejeezus out of me when I read it.

But think about it - they can't very well receive the tribunal request, look over the application notes, then turn around and say, "Blimey, we got it wrong here. Sorry!"

So this is a standard bit of verbiage. Stay strong.

Obviously I never got to a tribunal [SPOILER ALERT] but it really was like an intense game of chicken - who was going to blink first?

7. Evidence, evidence, evidence

This is what turned it around for me when we were waiting for a tribunal date.

I saw my MS Nurse, showed her the DWP's refusal letters and we went through them point by point. She also did some physical tests. This whole appointment took about an hour.

She then went away and wrote a letter in support which included irrefutable evidence based on her knowledge of my condition over the years.

The whole report was less than a single side of A4.

And in the phone call to let me know that their decision had been reversed, the person I spoke to said that this bit of evidence was what turned it round.

So save yourself a lot of bother - if you're applying now, include a notes from one of your listed medical professionals, as long as it backs up the things you have said elsewhere.

Another reason to include this kind of thing in your application is because NOT ONE of the medical professionals I listed - three for the first application, seven for the second - were contacted.

Perhaps I should have allowed enough time to gather this kind of evidence before I applied - but then, you're only given a month to return your application and there are enough things to stress about.

Conclusions

Like I said at the top of the first article, I am no expert in this sort of thing. But at the very least my experience shows that a decision can be reversed.

It takes a lot of stress and anxiety, and it might very well lead you to want to just give up.

But I can't help but feel that this might be exactly what the DWP is counting on. Call me cynical.

--

Just for reference, these are the scores I achieved through my application process, and how they changed.

Application 1: 
0 points for Daily Living
4 points for Mobility
Unchanged after Mandatory Reconsideration

Application 2:
6 points for Daily Living
4 points for Mobility
Unchanged after Mandatory Reconsideration

Final decision (after supporting evidence from my MS Nurse - remember, this was A SINGLE SIDE OF A4):
9 points for Daily Living
12 points for Mobility

my PIP story pt.1

If you are applying for PIP, here are the main things I learned in almost 18 months spent in limbo-land.

Firstly I'm not an expert on Personal Independence Payment. If we look at the facts, I submitted two separate applications, both of which were turned down!

But I thought it might be useful for anyone going through the process to see all the steps I went through to get to my result.

At the very least it might show that, with a bit a massive amount of perseverence you can get the result you need.

1. It's not the same as Disability Living Allowance

I approached applying for PIP in much the same way as Disability Living Allowance. THIS WAS A MISTAKE. It really isn't the same beast and what was fine in the past (writing about you on your worst days) doesn't cut it anymore.

The really slippery buggers are the Yes / No / Sometimes multiple choice questions about issues you might have. And it's these which mean that the system is not a good fit for a fluctuating condition such as MS.

If you have to tick "Sometimes", what does that actually mean? A couple of days a week? Five out of seven? I'd say that if it's over 50% of the time there's a good case for just ticking "Yes".

2. Get an outside view

Ideally this would be someone who is not personally or emotionally invested. There may be an organisation near you which offers an advice service - Citizens Advice, MS Society local groups or Disability Direct will all be able to provide some support to people making claims.

One other great source of guidance and support is Benefit Advice Essentials - see their Facebook group https://www.facebook.com/MYBASEUK and their website at https://www.benefitadvice.org/

When application number one was turned down we worked with the Derbyshire Unemployed Workers Centre as they have a lot of experience of these sorts of cases.

They submitted a Mandatory Reconsideration for us and when it was knocked back, they went through my form. And advised me to apply again.

3. If at first you don't succeed...

As I mentioned at the time, the main reason I was advised to apply again was because a lot of things had changed between my application going in (January) and the decision being made (August). I couldn't include things like adaptations around the house or Cognitive behavioural therapy sessions in my appeals because they weren't on my original form.

Could I have informed the DWP in the interim? Yes, probably - but they might have asked me to apply again anyway.

I was lucky in that, between submitting my form in January and the Mandatory Consideration refusal in August, I was still getting DLA. Which meant that when I reapplied in September (and got a positive result in May this year), I effectively didn't lose any money.

However. It was undoubtedly touch and go, and I wouldn't recommend it as a way to achieving a positive mental attitude.

I worked up the second set of answers with our DUWC representative, then drafted up the form. THEN the representative went through the answers again before I filled in the form.

And he took a lot of it apart, showing where I could be said to have contradicted myself or undersold the problems I have.

I think this is something that a lot of people do, because the whole process is so difficult to get through psychologically. We naturally prefer to assert our independence and focus on the things we can do, because the other option is too depressing. And even if we prepare our application with a family member or a partner, it's difficult to expose or recognize those parts of our lives.

The DUWC representative asked some tough questions and I didn't like him for a lot of the process. But he explained that he wasn't even thinking that the form would get passed at the first attempt. He was helping me to write it with one eye on a tribunal.

By getting it watertight at this point I would be giving myself the best possible chance at a tribunal, where an independent panel would look at evidence from both sides. Following on from this...

4. Language is important

Again, you will feel more confident if you're sure that your answers are watertight. Does your answer for one question contradict what you have said elsewhere in the form? Could this be used to undermine your claim?

Filling in this form is a horrible thing to have to do. You are laying bare the worst parts of your lived experience. You may not want to acknowledge that the person you are writing about IS you.

Give yourself a good chunk of time - I ended up panicking and rushing mine.

---
TO BE CONTINUED

the father of a PIP applicant speaks

When I'm writing this blog it's a very self-centered thing,  a way for me to sort out all the thoughts in my head and log my experiences and problems. If we're lucky then we'll have people around us who are also going through these tribulations alongside us.

A few weeks ago my Dad said that he had something he wanted to write. Here it is. 

History Repeating Itself or What Goes Around Comes Around?

My wife says nobody will wade through the potted history bit to get to the point I'm trying to make, I hope she's wrong! Here goes...

Before World War Two Germany was in dire financial straits. The powers-that-be decided they needed a scapegoat and decided on the Jews and all others they deemed a burden on the economy and society. During the war these same people came up with "The Final Solution" and subsequently handed the implementation of this policy to the SS.

With ice-cold logic the SS realised they could achieve their objectives more efficiently by utilising some of the inmates to organise the low level day-to-day running of their concentration camps. These inmates, known as Kapos, were often more brutal than the SS in the treatment of their fellow inmates. They were rewarded for their efforts with better food, accommodation and the removal of the fear of torture and death.

As the war progressed it became apparent, to the people at the top, things were not going to end well. Many started to distance themselves from the "The Final Solution", claiming it was not what they had intended and denying all knowledge of the death camps. The SS, realising they were in the frame for blame, again utilised their ice-cold logic. They came up with the now infamous mantra, "We were only obeying orders".

Well, that's all right then!

At the closing of the camps the Kapos gathered together expecting to be rewarded with freedom and congratulated on a job well done.

Consequently, their masters executed them. The SS regarded them with even more contempt than the other prisoners.

So much for old history.

Fast forward to the beginning of the 21st century. With the global financial crisis, the UK finds itself in dire financial straits. Austerity becomes the buzzword and the powers-that-be need scapegoats. I know what we can do! We'll use the same old reliable fall guys. Lets blame all our woes on the immigrants and the "liabilities" who depend on our inflated welfare budget.

Who are least able to defend themselves and least likely to kick up a stink if we attack them? You've got it! The people on welfare and the sick on disability allowance.

We have a solution. We'll get rid of Disability Living Allowance (DLA) and replace it with a policy that is so difficult to qualify for, that many claimants will just give up when faced with its complexity. Some may even die before they get a result. We’ll rebrand it to placate the general population and we’ll call it Personal Independence Payment (PIP). Makes it sound like we are actually helping people.

RESULT!

The DWP can implement this new policy. They have the organisation to carry it out. With their faceless upper echelon, all they have to do is gather the data and make judgements from on high. No need to meet the claimants. No need for empathy. No need for sympathy. That’s pretty cool logic if you ask me.

How are we going to get all the data from the claimants? Easy. We’ll "out source" it (another new buzz word. It means palm it off) to organisations like ATOS. They can train people in 6 weeks, who are ten deemed qualified to make judgements and write reports on people they've met only once. It won't matter what kind of disability they have, or what their personal circumstances are. We have a one-size-fits-all qualifying criteria.

Anyway, ATOS are incentivised. The more claimants that fail to qualify for PIP, the better ATOS will be regarded and rewarded.

We are present day now.
PIP is failing, as indicated in the news recently that all claimants dismissed with mental health issues must now be reassessed. The original instigators of PIP are wringing their hands claiming it was not implemented as they intended and recriminations are in the offing.

The DWP will not doubt say they were only following instructions when some of their judgements are reexamined.

As for organisations like ATOS, no, they won't be taken out and shot. However, for the many times they have misinterpreted and misrepresented the claimants they have interviewed they should hang their heads in shame.

I'm not saying the government are Nazis, or the DWP are as ruthless as the SS, or that ATOS are as craven as the Kapos. But the similarities in the modus operandi are frighteningly similar

Just for the record this is not the ranting of some raving Corbinista. Just a political middle of the road father who has no truck with extremists of any persuasion.

I'm just in the unfortunate position of watching my once confident and proud son become embroiled in a vindictive and unforgiving system that is denying him financial assistance that he never envisaged needing. This policy is destroying, both mentally and physically, the most venerable and need-worthy in or society.

I am not so naive as to expect life to be fair. Or to think nice things always happen to nice people in the end. Or even that justice and right will always prevail.

But one thing history has shown is that eventually, for all injustices committed, someone has always been found accountable and the truth eventually comes out.

i can hear music

At my last session my therapist gave me one task which I've been throwing myself into with some gusto.

She told me that I needed to listen to more music. I know, what a slavedriver. But I am nothing if not a good student.

One of my favourite bands has always been They Might Be Giants, who often get tarred with the wacky brush. However, they suffer from the opposite problem to The Smiths, who are mostly hilarious but who people assume are miserable. Conversely, TMBG write quirky, funny songs that have a sheen of cleverness and fun but frequently touch on dark issues such as death, depression and social anxiety.

One of my favourite songs of theirs is called - bluntly - Dead. Call me a simpleton, but I’ve always just read the lyrics as being an original look at the concept of death and reincarnation

I came back as a bag of groceries

as well as fears about the legacy we leave behind

Did a large procession wave their torches as my head fell in the basket?
And was everybody dancing on the casket?

as well as daft regrets and the wrongs we never corrected

I will never say the word "procrastinate" again
I'll nevers see myself in the mirror with my eyes closed
I didn't apologise
For when I was eight and I made my younger
Brother have to be my personal slave

So far so clever (but since when did we see cleverness and expertise as a bad thing?).

But the day after I got my second PIP refusal letter I spent a lot of time playing TMBG songs. I was in a bad way and quite frankly just about ready to give up. And in my heightened state I realised that this song is actually about depression:

Now it's over, I'm dead, and I haven't done anything that I want
Or, I'm still alive and there's nothing I want to do

It seems so bleeding obvious now but a quick look at the TMBG wiki shows that not one person has tagged it with depression or pulled out that theme.

But that line ("I'm still alive and there's nothing I want to do") summed up how hopeless and pointless it felt that day. And weirdly made me feel better.

But it’s not all highfalutin concepts and heavyweight lyrical concerns. Sometimes pop smarts just come at you out of left field and you find yourself playing the same song over and over again.

A quick reccy of YouTube plays and recent Last.FM stats shows that I’ve played this song by Alvvays around 12 times within the last couple of days.

I know nothing about them, they're not doing anything remotely original. It's a song about love gone bad through thoughtlessness or laziness, and musically it’s treading some well worn paths.

All I know is, the way she slurs downwards on the word "psychology" at 1.28 (on the video above) makes my heart go all squiffy.

That one moment makes my day every time I play it, in a way that hasn't happened since the off-beat ride cymbal which kicks in at the end of Uptown Funk (from 3.54). Yes the song is the very definition of ubiquitous but by god that's a Grade A piece of pop arrangement.

So what has all of this navel-gazing got to do with anything?

Yesterday I went for another bloody job interview. I’m waiting for feedback and clinging to the fact that one of the people who interviewed me isn't at work today. But being realistic it's not looking good is it?

However, at the very least this will be (surely?) the last job interview I have this year. So that's something, right?

Play it again, Stevey.

my (first?) 14 days with fampyra

Not Fampyra / Fampridine. This is Vampyra in one of my favourite films, Plan 9 From Outer Space

Day 1
Maybe I’m concentrating more on sensations and the quality of my walking, maybe it's the wonder of the placebo affect, or just the feel-good sensation of doing something, but I feel more stable already. More control over my feet, toes more responsive after my usual vigorous after-shower massage.

Day 2
A little thing but I'm able to move the toes on my left foot without feeling as if I'm mentally and physically doing some heavy lifting.
Balance still shot but lugging myself around is definitely improved. Increased sensation in my fingers. Downsides? Feel a bit constipated and bloated.

Day 4
We had a late night yesterday, which coincides with the clocks going forward an hour later on tonight. As the doses of Fampyra need to be taken at 12 hour intervals, this is troubling me. I’ve decided to do a "hard reset" in the morning - this is when my stomach is at its emptiest. Who knows?
Have been wobbling like a newborn foal - it's like I'm learning to walk again AGAIN (again?). 
Went swimming today with my Dad who noticed improvements already.

Day 5
The slump. I've been trying to keep my perceived improvements under my hat but it turns out everyone has noticed already. I feel like a watched pot or a tiny animal in the garden which no-one wants to scare off. 
Last night we mad a meal from the OMS Cookbook, which was a complete and utter faff and was REVOLTING. Had a bad night's sleep plus we lost an extra hour. So I felt as bad as normal. Patience at all time low. Plus still feel sick after gross meal. 
The day was saved when we ordered pizza - mine was Vegan and delicious. Plus I shared our cooking failure with an OMS Facebook group and they all related their own disastrous meals with me.
Tomorrow is another day.

Day 6
Had a great night's sleep - still getting supportive messages on Facebook (it's good to know that most people feel the same about Flaxseed oil!). 
Not so much positive action with regards to my walking at this point. Is it stabilising?

Day 7
Went swimming - the absolute highpoint of my day was when I drove out of my parking space and a woman driver pulled up really close behind me. When the lights in front of me changed and I had to stop, I saw her completely lose her shit in the rear-view mirror. This is usually what I do. She looked totally ridiculous. Then, because she was on her phone (!), she didn't realise that the lights had changed. While I was waiting at the next set of lights I could see that she hadn't moved and had missed her chance to drive on.

Day 8
Unexpected Daddy/daughter day. She says she's ill, I'm not convinced. I recognise the tactics from my 10th (?) birthday when I pretended to be ill so I could come back home and listen to my new Howard Jones LP.

Day 10
The effects of Fampyra are getting less impressive by the day - over analysis on my part? Should there be a cumulative effect? Feel bereft of something I never had. The disappointment on the faces of family members is precisely why I didn't want anyone to notice.

Day 11
We attended a music festival in Derby City Centre. Access to most of the venues was shocking and we ended up using the dreaded wheelchair for part of the day. But we had a good time.
Low point was my Vegan pub meal - it was the first time I've felt punished for my life-style choice, just a load of vegetables in some anonymous stock - even I know to use cornflour to thicken sauces, people!

Day 12
Felt tired and beaten after yesterday and full of self-pity. Pep talk from my Dad which made me realise that although Fampyra on its own might not be a miracle-worker, if I can take these improvements in control with me to any Physio which I will be doing (alongside continued swimming), it won't do me any harm.
---
It was at this point that I decided to contact the MS Nurse to arrange a continuation of this treatment. So on Monday, I go to see her to find out if my walking speed really has improved as much as it seems.

Regardless, the change in my ability to control my feet has been really quite something. As I said, it's not (in my case) been a miracle cure - it has (to my mind) increased the speed of my walking, but not necessarily the quality of it - there's still work to do to prevent scuffing, dragging my feet, etc. So now I'm chasing a referral for another round of Physio and an appointment with Orthotics.

by way of an explanation

AKA my glittering career

In the past, when the gaps between posts have dragged on, it has been because nothing has happened. 

This has not been the case this time. 

The appraisal process which I mentioned before has been going on since February. There have been many regular (interminable) meetings, which have felt quite personal and pointed (call me paranoid but that don't mean it ain't so). 

Somewhat annoyingly, way back at the start of this appraisal process I was asked if I wanted to reduce my hours or take a position with less responsibility. My pride got in the way and said that I wanted to step up and deal.

If I could go back in time, I would bite my boss' hand off.

At one point in the process (probably before another meeting) I told my boss that I was hating it and wanted it to be over. It was making me miserable and ratty, at work and at home. 

He said "I know what you mean. I'm going through it the same as you". 

To which I responded, "With the greatest of respect, I really don't think that you are". 

(If memory serves, that was the day my daughter put this plastic medal in my shirt pocket, where it remained for the whole day. She's a heartbreaker.)

FULL DISCLOSURE: in the middle of all of this, there have a couple of things which I have let slide at work. I'm not proud of this.

We recently had a board meeting and I was left feeling incredibly exposed and attacked. And I did not respond well (I should say that I put my head down, rather than standing on the table, giving everyone the finger and loudly suggesting they had known carnal relations with their maternal parent). 

Questions have been asked about my ability to do my job (I've been asking them of myself too). I was given a series of key tasks to achieve and I have met them - even going so far as taking documents away when we went on a much-needed holiday recently. 

On top of all this, the Board requested that I have a workplace assessment. Now I've had these in the past but they've always been from the view of supporting me. The employment law specialist on our board recommended this company:

http://www.ohbm.co.uk

Now in my pre-assessment research, my feeling was that this website didn't look like it belonged to a company that was overly concerned about protecting the rights of disabled employees. To put it mildly - no matter how conveniently (or even cynically?) multicultural the images on their website. This was the view shared by the Equalities Officer at my local council.

My boss said there was nothing to worry about, that the trustees needed to show the organisation had thought about all the potential outcomes, which would mean a nice healthy 'tick' in this section of our Risk Register.

But my last relapse was four years ago, and my attendance record is little short or exemplary. If all this is prompted by my recent performance, surely this should be a disciplinary matter; rather than being about my wonky genes and uncertain prognosis.

I was righteously nervous, so much so that I asked my dad to come along to support me - as suggested by my MS Nurse and the aforementioned equalities officer.

Despite a couple of hairy moments, this actually went ok. The assessor seemed to have some knowledge of MS and made some pretty good recommendations - timetabled work from home, regular breaks throughout the day, and MEDITATION. The first two of these will come under the heading of 'reasonable adjustments' that my employee will have to consider. The third one is for me alone.

Right. That's everything up to date. It ain't over, not by a long a stretch - but AVANTI!

PS - I am aware that there have been seismic changes in UK politics in recent weeks, but I feel that they are currently beyond the scope of this little blog. Plus things seem to be changing on a daily basis. I am scared about the future of this increasingly inward-looking little country.

in brief

There has been a bit too much real life to have any time to post anything recently. Yes, it's the annual "sorry I haven't blogged for ages" post!

My phone is full of scrabbled notes of things I did want to post, however. So let's clear them up!

• Thanks for the comments on my last post. Some of you will be pleased to know that, far from being retired, the sexy grey (Eastern Bloc) walking stick has now been joined by its twin. Double the sex appeal!
  Hilariously my love for these sticks was only increased when I saw that the company that supplies them is called SimplyMed. 
• New Years Resolutions. I absolutely don't agree with them. However on New Year's Eve me and the divine Mrs D had a nice quiet night and went through some questions from a dinner party set - where was the best place you went to this year, that kind of thing.
  Although it sounds a bit like organised fun, it was really nice to look back on the year and everything we've done. Obviously there were some resolution sheets and questions about things we wanted to give up. As a mostly clean-livin' sort of fella, I've promised to GIVE UP LESS OFTEN. 
• This was mostly prompted by watching my daughter. We had a couple of days in London over Christmas and she is SO FEARLESS and TENACIOUS. I genuinely don't know where she gets it from, being an "if at first you don't succeed, give up"-kind of guy. So there's that. Plus swimming more regularly, continuing with my physio, maybe even eventually the dreaded WALK TO WORK. Gah, that old chestnut. 
• A couple of weeks ago, we had a meeting at work with an associate who I've met her a few times and always enjoy seeing - she's kind-of spiky and brusque but always good value. I was having a wobbly day so was walking with a stick and using the lift to get to the room. She clocked my stick and asked me what I'd done, I used my usual "it's just something I need to use"-line which I assumed would close it down. But bless her, she was like a dog with a sore tooth - she could not leave it alone. I took a seat while everyone else went off to drinks (as she travels up from London for our meetings she always eat through them as it's the only chance she gets). And she just would not let it go -asking my work colleagues for more information which made them very uncomfortable. Eventually they said that Steve has a long-term health condition which should normally have shut it down) but she kept pressing.
  Eventually, my colleague said that she was really uncomfortable saying anything but Steve has this THING and if she wanted to know more she should talk to him.
  Cue the associate steaming into the room, giving me a huge hug, apologising profusely and asking loads of questions.
  It was great but I'm just glad that I only used one stick on this occasion. God knows how she would've reacted if I'd gone in with both sticks blazing.
• David Bowie died. It's been weird, I've never been so affected by a 'celebrity' death before, but this has floored me. What an amazing career, what an incredibly artful way to manage one's own death, what a legacy.

So that's that all cleared up. And the only reason I've got THIS done is because I'm on a Residential Course for my job - putting myself  "out there" a bit more for work and being more proactive is another resolution thing I've decided to do more of this year.

So now I'm going to sit and watch this Panorama MS special and probably have a bit of a cry.

stoicism: a blagger's guide

Recently - probably prompted by this excellent post on Avonex and 8 Wheels - I've gone back to re-read a book my brother bought me years ago, The Consolations of Philosophy by Alain de Boton.

I know that he can be quite a controversial character, accused of dumbing down unnecessarily. But I enjoyed this book (again) so I don't think I agree with the view of him as "a slapheaded, ruby-lipped pop philosopher who's forged a lucrative career stating the bleeding obvious".

As I've realised through my brief dips into the worlds of mindfulness, CBT and my everyday life, sometimes I NEED someone to state the bleeding obvious - say it to me enough times and it might just bloody stick.

Each chapter focuses on the works of a different philosopher -  Socrates, Epicurus, Seneca, Montaigne, Schopenhauer and Nietzsche - and showing how they can be of practical use in certain aspects of our lives. So there are philosophical consolations for Unpopularity, Not Having Enough Money, Inadequacy, Difficulties, A Broken Heart, as well as the one which really struck me, Frustration.

Now I can't really remember when my brother bought this book for me - it will have been a birthday or Christmas some years ago. But whereabouts in my MS journey I can't really place. And like another recent-ish re-read - Douglas Coupland's MS-related weepie Eleanor Rigby - the fact that I didn't take more from it beggars belief.

This chapter is devoted to the work of Seneca, a Roman philosopher who died in AD 65. Seneca was a man who took Stoicism to almost lunatic levels.

Although he had once been a favourite advisor to Nero, Seneca was (falsely) implicated in an assassination attempt on the emperor and was ordered to take his own life. So, after consoling his friends and family ("Where had their philosophy gone, he asked, and that resolution against impending misfortunes which they had encouraged in each other over so many years?" (1.)) and two fruitless initial attempts, he asked to be placed in a vapour-bath, "where he suffocated to death slowly, in torment but with equanimity" (2.)

Here's a Senecan definition of frustration:

Though the terrain of Frustration may be vast - from a stubbed toe to an untimely death - at the heart of every frustration lies a basic structure: the collision of a wish with an unyielding reality. (3.)

With the following illustration.

from Alain De Boton, The Consolations of Philosophy, p.80

I don't know about you but to me that seems like the perfect depiction of a natural response to being handed a diagnosis with any chronic illness. I can certainly see a lot of myself in there!

But it's not just the diagnosis, it's all the other little indignities which MS can pile on us. The walking sticks and the wheelchairs. The bladder-retraining programmes. The endless planning for once-simple trips and the many "sorry I can't go, I'm too tired"s. The cog-fog. It's no wonder we can get frustrated.

This great post on Weaving a Way is a perfect example of how I have felt, and frequently still feel.

Reading the chapter about Seneca, I can recognise the value in his stoical way of life. Anger is a kind of madness - "There is no swifter way to insanity" (4.) - resulting from an unrealistically optimistic view of the world.

I don't think that Stoicism is simply passive, fatalistic acceptance. We don't simply have to resign ourselves to "our lot". And this is a passage which really struck me:

We may be powerless to alter certain events, but we remain free to choose our attitude towards them (5.)

I'm not entirely sure I completely go along with the idea that, "That which you cannot reform, it is best to endure" (6.), but there's a lot in this way of thinking which I think is incredibly helpful (maybe bleeding obvious in the cold light of day but helpful nonetheless). 

Our brick wall, our unyielding reality, is the fact that we have a chronic, disabling illness with an uncertain prognosis. As soon as can begin to accept that, then we can focus on living to the best of our potential - seeking help when it's required, advocating for our condition.

All very highfalutin and I can hear my family members choking in disbelief - I am NOWHERE near this level-headed in real-life. But as a man who has a fairly hair-trigger relationship with outbursts of frustration, I'm constantly trying to be better.

...for Seneca, in so far as we can ever attain wisdom, it is by learning not to aggravate the world's obstinacy through our own responses, through spasms of rage, self-pity, anxiety, bitterness, self-righteousness and paranoia... we best endure those frustrations which we have prepared ourselves for and are hurt most by those we least expect and cannot fathom. (7.)

In Seneca's view, Philosophy's main job is "to prepare for our wishes the softest landing possible on the adamantine wall of reality" (8.)

from Alain De Boton, The Consolations of Philosophy, p.81

I bet he was GREAT FUN at parties.

Actual footnotes and everything:

De Botton, A. (2001). The Consolations of Philosophy. London: Penguin.
1. p.76
2. p.77
3. p.80
4. p.82 
5. p.109
6. p.111
7. p.81
8. p.81

up and down like a bride's nightie

The magnificent John Shuttleworth (Sheffield's premier songsmith) yet again sums up my life. Warning: this song contains a slightly blue lyric.



So I finally got a letter from the neurologist who had eventually seen my MRI. At the top of the letter was the following titbit:

In a truly mind-boggling display of my inability to see the bright side, I read this as I don’t have Secondary Progressive MS YET.

After being told to actually read the bloody letter properly, I realised that this was the same as me saying that I don’t have cancer or ebola yet – e.g. while this is true at this point in time, it is no more useful than me saying that I haven’t been run over by a car YET or I haven't lost a limb in a bizarre gardening accident YET.

So I eventually accepted that this was the good news that I hadn’t allowed myself to expect.

(although the reference to a "very pleasant gentleman" made me double check that this letter wasn't intended for someone else)

I think my problem is that I know the way that MS tends to play out – 10 years after an initial diagnosis of relapsing remitting MS the majority of people (as high as 80%) will be re-diagnosed with Secondary Progressive MS. Subconsciously I was trying to prepare myself for the worst. And yes, I know that this is probably the way that this beast is going to play out but it's not particularly 'mindful'. Or healthy.

So earlier this week I toddled off to the MS Nurses to talk about my switch to Tecfidera... which was a less upbeat meeting than the one we had before.

The Nurse wasn't quite as sold by my need to change medication, quoting much more conservative relapse-rate stats, as well as pointing out the two (so far) instances of Progressive multifocal leukoencephalopathy (PML) in people taking Tecfidera - one fatal.

An aside: PML would be the correct acronym for 'Piss Myself Laughing' - and yet PMSL seems to be the favoured choice amongst 'young people' in their illiterate texting. What a world we live in...

Seriously - these are the things which wind me up! I am an OLD MAN.

According to the nurse, in these cases the doctors hadn't known to check the white blood cell count of patients before starting the therapy.

I'd gone into this meeting expecting to be sent away with a prescription so this was a bit of a kick in the teeth. But I went off to have my bloods taken there and then, prompting the following waiting-room hilarity...

I'm a teenage phlebotomy #ramones_based_hospital_fun pic.twitter.com/bKLbWTqM5w

— Steve Woodward (@stevedomino) August 3, 2015

Another Aside: There's an Italian-themed coffee shop by the entrance of the hospital. I repeat - this is in a HOSPITAL. This coffee shop is called Fonta Nelle... FONTA NELLE... Fontanelle? Just me?

So I was really pleased to get a call from the MS Nurse team yesterday - although my white blood cell count is on the low side, this might be a side-effect of Rebif. Aside from that, there's no reason for me not to switch meds.Yay.

I'll take a two-week break from Rebif (handily coinciding with a holiday we're taking) then toddle off to the QMC for more blood tests, another chance to get any further questions answered, and then I'll hopefully walk out with my first load of pills.

I know that this could be the start of a whole OTHER world of issues but I am so over injecting. The side effects from the pills can't be as bad - can they??

a historical artefact [TLDR]

Among my group of friends in the pre-internet age, much of our cultural and social capital was tied up in how much we knew about music, obscure or otherwise (preferably obscure). Yes, we could be more than a little bit intimidatingly smart-arse-y about it, but I have many fond memories of sitting in pubs, drinking, (and even smoking) while shooting the shit about music.

Back in the day we would make compilation tapes and CDs for each other and I'd been visiting Music blogs like Spoilt Victorian Child, Bubblegum Machine, You Ain't No Picasso for a while. So eventually, our own brand of musical one-upmanship led to the creation of Domino Rally, enabling the members of our band Johnny Domino to talk about the music we were into.

To me, this was a more altruistic time of music enthusiasts writing about artists they loved, sharing one or two tracks, linking to the artist and encouraging people to actually buy music. I'm not going to pretend I haven't benefited from bulk-downloading of pirated music but to us it was more a kind of recommendation service we were providing. Plus I still like actually buying stuff.

In the back of my mind, I kind-of thought that, if we talked about it enough, we'd strike up a conversation with an audience who might be interested in the music we were making ourselves.

Did it work? Well, we did receive a lot of comments on the blog and struck up a number of transient faceless online friendships. But did this translate into sales of CDs?

Ask yourself this question: how many Johnny Domino CDs are in your house? 'Cos we've got f**king loads of them!

Anyway, about a year and a half after starting the blog, Johnny Domino played their last gig - it became more and more difficult for us to get together. (Maybe we also felt slightly ridiculous being men of a certain age trying to make it playing music. Who knows.)

At one point, I received a (fake?) Cease and Desist notice from Google, panicked and removed all the posts. So for no good reason whatsoever over the last couple of years I've been slowly reuploading all the articles, replacing the MP3 files with Spotify / YouTube embeds where available.

Here's a playlist! Only the first 200 songs available by this embed but here's the link to 337 songs and nearly 22 hours of music.



This really was as wild as our Wild Young Days got, but I've loved re-reading the posts - some of the writing is actually pretty good and I still love a lot of the music (with a handful of exceptions). The comments we received haven't been reuploaded yet - another time, maybe.

It seems to me that these days music is everywhere, more portable than ever, and more accessible. But somehow it seems to mean a bit less. Not to me, I must add, and maybe not to you.

I still buy a lot of music in a variety of formats, and I still get a thrill from hearing something new and different - I'm going to be 42 in a week or so, so I genuinely love hearing something which confuses me, and which is a reminder that I'm not really the target market - it's good to know that this can still happen!

As an illustration, a recent WTF moment was when I heard the following song (which I really like now, despite - or because - it sounds like it was recorded on someone's phone).

down the rabbit hole

So it's probably two weeks or so since me and Mrs. D went to see the lovely MS Nurse Team at the Queen's Medical Centre in Nottingham.

While we were waiting outside we read through a booklet which was about the type of treatments which are available on the NHS - worryingly they were all injection-based, so all just variations on a theme.

Like I mentioned before, the reason for seeing them was because I'd been noticing that the side-effects of my Rebif injections were getting more and more debilitating - plus they seemed to be lasting forever.

With injections on Monday, Wednesday, Thursday, I would be good on Sunday if I was very lucky.

But in my annual meeting with the Neurologist last March, we talked all this through and he said that Rebif was still a first-line treatment.

When we got in, we explained all this to the MS Nurse, who said that the booklet we were looking at was really out of date - they don't tend to prescribe many injection-based treatments, preferring to get people started on oral therapies (the first choice of many patients too, I'm sure!).

She also mentioned the fact that people on some beta interferon injections can sometimes start to produce neutralising antibodies - so reduce the effectiveness of these drugs. So this might be a reason why my side-effects were getting more intense.

This particular nurse (Maxine) always seems to have a tote bag with her which is full of booklets for different therapies, and she did not disappoint this time - see the image on this previous post.

(The MS Trust booklet is particularly good)

We talked the options through, explained our concerns and my side-effects, and were particularly interested in Tecfidera (dimethyl fumarate), which has been shown to reduce replaces by up to FIFTY PERCENT - beating the "by about a third" which gets bandied about for the more old-skool injection therapies. I've since confirmed with the MS team that this is where I want to go, so the wheels are now in motion.

The other thing we talked about was my ongoing problems walking and the drug Fampyra (called Ampyra in the US), which we mentioned as an outside possibility - Maxine is a real force of nature and said that she didn't see why I couldn't go on this too.

By this point we were both in tears - the last few months have been really hard and not-a-little worrying for us but now we were in a position to make some changes for the better. Normally I would have just waited for my until my annual Neuro appointment (which is in July)!

Maxine vowed to talk the Neuro I'll be seeing, and to arrange another MRI for me - I haven't had one since the MRI which led to my initial diagnosis and we need to check my lesions, especially because I've recently been experiencing a bit of new-ish Neuropathic Pain (mostly intense burning beneath the skin).

When I said that I found my previous MRI experience traumatic (to say the least), she admitted that she did too and suggested that I get sedated for my next one (date TBC).

So a really positive experience - and now I wait to hear from them about when I can (hopefully) get off Rebif.

GOD SAVE THE NHS - in light of the recent election, I've just written to my new MP from the http://www.treatmerightms.org.uk/ website.

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!!!

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!)

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.

the gullible cynic

The Internet can be an amazing thing - especially if you have an illness like MS.

Most importantly, you can find somebody, somewhere who will have already written about any symptom in order to back up ANY half-baked theory you might come across in the course of your day!

Exhibit A
I've stopped having Cow's milk in my cereal, shifting to a Soya alternative (quite nice actually) after reading various things about a link between MS and Lactose Intolerance. But the thing that finally convinced me? Well, that was finding a web page (which I can't find now!) which said that the cheese-making process actually removed the lactose - so I can still eat cheese! Result!

I do actually feel quite a bit better, it has to be said - much less slovenly and my memory (for work stuff) seems to be better (still SHIT at home, mind) - but that could be due to any number of reasons:

• I genuinely love the autumn - Jumpers! Comfort food! Bright crisp mornings! Cardigans!!
• I've recently doubled my Vitamin D3 intake to 2,000 IU.
• I've walked into work for the first time in AGES on a couple of occasions in the last week - it was lovely (see first reason above).

So it could be the Soya or it could be... I dunno. Just good vibes?

I even recently picked up this article about Bacteria in soil having a link with MS - bizarre and I DID eat soil as a child...

When I go home to talk about this stuff, my wife just rolls her eyes - "oh, what have they decided this week?"

And it DOES seem that there's always something new which is put forward as a theory - hopefully something which can make you feel quilty - "are YOU eating enough LIVER? Tut-tut"

Call me a wet liberal but I like to think we should, as a species, be moving beyond the idea of OFFAL as a food choice. I know it's supposed to have loads of good stuff in it but when you think about what a liver actually does... just *ick*.

I always come back to when I was first diagnosed, when the neurologist who called it what it was told us to stay clear of the Internet.

There are some totally valid sources of information - MS Trust, MS Society, Shift.MS - but even here there are open forums where people can sound off about their individual symptoms and have a good old moan (a long-standing pet peeve of mine) - and even play DISABILITY ONEUPMANSHIP BINGO. Brilliant!

But my absolute favourite thing about the Internet is currently Twitter - I can't even put into words what I love about it, but in the last few months I've had many chats with people - some newly diagnosed, some old-timers - not to be the "Big I Am" but just going back to my idealistic view of solidarity and LOOKING OUT FOR EACH OTHER.

(I still hate the #MSsucks hashtag, however...)

Anyway, I organise my feeds into two lists - the full list of those that I follow, including musicians and hopefully amusing celebrities, and one called Real People - these are people who I interact with regularly or have even *gasps* met in the Real World.

One of those Real People is Abigail Budd and earlier today she posted a link to another new study which says that "measuring the walking speed of multiple sclerosis patients can help doctors assess progression of the disease and the severity of disability". It then goes on to give an idea of what level of disability can be expected based on walking speed.

I flipped out (mildly - I am at work, after all) - how is that study useful to someone who has been recently diagnosed, or even to someone who has been diagnosed for years? As Abigail said to me, it's not offering much in the way of hope or disease treatments.

It's effectively just giving a new yardstick to measure how difficult your life is / is going to be. I have visions of people with MS walking around with stopwatches. And what's going to happen if they can't manage the desired time on that particular day?

Are we so out of ideas that we're each going to turn into our own personal ATOS? The current UK government would probably call that an "empowering decentralisation" or something.

As is so often the case, I don't really know where I'm going with this (and I am hungry) - but we need to be careful about what we choose to believe (obviously).

Just like me with the thing I found about Antihistamines or my ridiculous Lactose rule - if it had meant cutting out cheese, I'd never have even considered it (wish I could find that website, though...).

My problem is that I'm a very gullible cynic - I try to take everything with a pinch of salt but like my canine friend says...



[edit: see my follow-up to this post, corrections and clarifications]