shit happens

A weird week, and a perfect reminder that it's not always MS.

So for the last couple of weeks, I've had a seemingly-endless crappy cold.

Yes, it's just a cold. But throughout this - probably because I'm such a slacker - I've been going into work as usual.

(as an aside, this cartoon appeared in our paper right in the middle of all this - round about the time a colleague complained about having MY COLD)

Plus now Evie is around, it's almost like a never-ending game of PASS THE BUG.

We've all had this cold, which has led to many disturbed nights' sleep.

So you can imagine how pleased I was when yesterday we were all convinced I was having a relapse. Inability to lift my legs, inability to carry anything, loss of manual sensation, lower levels of cognition, blah, blah, blah.

It was a really hard day for us all, coming so close to Christmas, and at the end of a fairly shitty year.

For the last week we've all been waking each other up with coughing and spluttering so last night we decided that I should use the spare bed in the office we spent so long clearing out earlier this year.

So after a decent night's sleep, my legs are "back on-line", my brain seems to be okayish, and I can carry things.

Within reason - this morning, I totally passed-out in our kitchen. Which was nice. In my mind, I look something similar to this (although it's just a little bump in reality).

As such I'm working from home today - in our lovely office.

So why share all of this, especially after my recent rants about the MSer trend of MOANING ALL THE TIME?

Just to give it all a bit of balance - another time, this might've turned into a full-blown relapse. But more often than not, there might be other elements at play. There're a lot of shitty viruses out there, so don't do like I did and continue to drag yourself into work regardless - we all need to look after ourselves, yes?

But hey! I received my Disability Living Allowance Christmas Bonus for 2012* the other day.

(* genuinely this is what it's called! I've never won anything in my life before - LUCKY, LUCKY ME)

That extra £10 (TEN WHOLE POUNDS!) will go a long way. I was chatting with my Grandma the other day - she gets enough for a months gas bill.

I'll be lucky if I manage to get a box of candles!

medical/individual < social

So a couple of weeks ago, at the request of my boss, I went with him to have a talk with the Equalities Officer.

This was because (and I'm paraphrasing here), my "next relapse is 'in-the-post' and we need to prepare."

(Friends on Twitter might recognise this from a tweet from earlier this year - it has taken this long for us to meet up)

My boss has quite a way with words but I do see it from his point of view: I work for a small not-for-profit organisation and if I have to take, say, 6 weeks to recover from a relapse (like I did earlier this year), then it can be hard to absorb this within the team.

So we talked about a lot of things, about my difficulty with certain aspects of my role, etc and I could tell that my boss was finding this all very difficult. But we came up with some ideas which will help us all - most of them REALLY FRICKING OBVIOUS.

Case in point: we've just completed a massive project, and as part of that we bought three laptops.

Which have all been sat in a room at work.

The idea was mooted that if I had one at home, it might help me to stay in touch and even maybe do some work from my sick-bed during my next relapse.

Like I say, obvious stuff but it was very helpful for us both to have someone independent who could listen. It was kind of like couples therapy in a way, and we both agreed that it was good to talk about some fairly awkward issues.

Anyway, there was a little bit of FALL-OUT from this discussion which I'll cover at a later date.

(oh, the suspense...)

First up, the Equalities Officer is someone that I saw way back in the days immediately after
Relapse 09 - Part Two so I knew she had my back.

At that time, she laid a real mind-blower on me, when she picked up on my feelings of shame and inadequacy following my diagnosis and "relabelling" as a DISABLED PERSON.

She told me about two different ways of looking at Disability:

The Medical or Individual model
(which suggests the disabled person is the problem)

And

The Social Model of Disability
(which shows the barriers are the problem)

Now. This might not be news to you. I'm not the sharpest tool in the box.

But she was able to pick up that I was TOTALLY living the Medical/Individual model, seeing everything as my fault.

Seeing things via the Social model was - and CONTINUES to be - a real eye opener.

PLEASE NOTE

This does not absolve us of responsibility.

If anything, this means WE have to shout louder about the things we need to get by everyday.

Not just whining about the symptoms we all have and acting the victim.

This just makes us seem WEAK, which makes it so much easier for people to ignore us.

Here endeth the lesson.

(see illustrations of both models below - hope these are accessible to all, I'll sort it later if not!)

from the (not that) sick bed

We'll try that again - seeing as the new-and-improved Blogger app just lost my long draft!

TWICE!!

So I'm at home on a sick half-day off work - no biggie, just a stinky cold which has been bubbling under for a week and which refuses to shift.

incidentally, the only good thing was the husky voice which developed over last weekend - in my head I was convinced I sounded like Tom Waits / Lee Hazelwood / Johnny Cash, until a colleague said I sounded like a Muppet. Which is obviously even better. Anyway...

So I'm trying to do the thing that I always say to people when they NOBLY come into work when they should really be at home in bed. Plus I haven't updated this blog for ages because real life keeps getting in the way.

First up, many thanks to all the people who either tweeted or left a comment on the last post - the one where I was debating whether to get involved with another round of LinkedIn-fisticuffs.

Pretty much everyone was of the opinion that I should wade in. It's good to know that if we'd known each other at school you'd all be offering to hold my coat, rather than holding me back to prevent another humiliating beat-down. Cheers.

Anyway, I DIDN'T post my response.

I know, what a sell-out. But it comes down to what I've said before, about picking yr battles and managing your stress levels.

Bear in mind that, by the point I published that post, I'd been running it over in my head for a couple of weeks - not really very good Fatigue Management, or a very good advertisement for CBT. Needless to say, my therapist wasn't very impressed with me.

Yes, I could have got involved further but would I have altered the opinions of the two guys involved? Or would I have just become another MOANING DIS-BO who complains while abusing parking along with all our other wonderful "perks"?

And anyway, I'd got it off my chest by sharing it on here with you. Thanks for listening.

Sorry that I wussed out, as opposed to STICKING IT TO THE NORMALS. I promise that - when it's a fight worth fighting - I won't bend so readily.

Hey - who wants to know which UK performing arts centre employs one of these jokers in a fairly senior role?

What??! I never said I was big OR clever, did I?

once more unto the breach..?

So I eventually received a response to my LinkedIn fury from the other week.

Actually, I got a response over a week ago - since then I've been slowly chewing over my options.

First up, I got this response who from the guy that prompted my initial message (hereafter known as Mr Reasonable):

Fair enough I thought (but I don't really get why this comment gets 'thumbs' - what gives? No 'thumb-love' for the righteously-peeved disabled person?)

Anyway, a couple of minutes later, this appeared:

Gaah! Just When I Thought I Was Out, They Pull Me Back In!

So this is where we are – I’m weighing up whether I really need to get myself embroiled in this.

Below is the response that I would send if YOU, DEAR READER deem this to be a sensible use of my time:

Matthew - yes that sounds reasonable.

But as we're all – in one way or another – working in Customer-facing environments, and as some of us may also be publicly-funded, my issue was with the language you used in this group - which implied an attitude and a lack of awareness that was unfortunately mirrored in Roger's subsequent comment.

OK

I know this is a closed forum but (ta-daah!) I’m a disabled Marketing Professional and I'M reading it so there's at least one of us.

It took me a long time to get up the courage to use my disabled parking permit and i do get the odd dirty look when i park in a disabled bay. I’m not a wheelchair user yet and on my good days I can pass for 'normal'.

People’s conditions can fluctuate - I know that mine does. Also DISABILITY does not automatically mean WHEELCHAIR USER.

However, I am entitled to use my parking pass without being judged or (God forbid) being abused if i walk into a building normally after parking.

If someone holds a lift for me, I’ll try to get to it as quickly as possible - that's just being polite, isn't it? Should I hobble slowly from my Blue Badge space (ideally using my walking stick for added effect) so people don't assume that I’m abusing the system?

Or should people:

a) Give me the benefit of the doubt in a 'there but for the grace of God' kind-of way
or
b) Mind their own business

I know this is wildly 'off-topic' for this group. BUT we should all be careful about the language that we use, even in non-public environments.

So what do you think should I publish this comment? Or should I let it alone?

benefits and MS | Multiple Sclerosis Society UK

MS Society awareness talk: benefits and MS | Multiple Sclerosis Society UK

This is another talk we're going to be at - according to the website, it wil feature, "An overview of disability benefits including Disability Living Allowance/ Personal Independence Payment, and Employment and Support Allowance".

Incidentally, two days after my LinkedIn rant, not one comment on the original thread!

Crazy - these people work in the relam of Customer Relationship Management! They should really have the balls to respond, don't you think?

i love the smell of righteous fury in the morning

Always nice to start the day off with a rant!

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

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

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

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

One comment went thus:

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

HERE COME THE PAIN:

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

gaucho

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

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

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

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

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

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

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

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

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

Talk about putting a positive spin on my condition!

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

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

mind = officially blown

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

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

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

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

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

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

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

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

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

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

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

Y'know, that kind of thing.

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

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

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

So she totally called me out on it!

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

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

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

Shaw Taylor says....

KEEP EM PEELED

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

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

image and description from Ultimate LWT

is this helpful?

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

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

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

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

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

Controversial POV coming up - duck for cover

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

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

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

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

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

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

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

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

I love this bit from Jackie's post:

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

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

Let's get on with it!

brief encounter

A PICTURE OF FATIGUE

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

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

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

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

working, not working

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

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

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

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

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

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

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

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

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

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

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

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

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

I should be more open to these ideas, maybe.

---

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

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

Ho-hum, such is life!

here comes the flood

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

Work issues
My boss has quite a way with words.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

So the problem is totally in my head.

Bladder Retraining Programme, here I come!

waiting for a bus

So a lot has happened recently - let's dive straight in, shall we??

First up i have some new Real-Life Heroes - the guys who've submitted user reviews for incontinence pants on the Boots website. They were all aged between 35-44 (just like me) and this fact led me to man-up, walk into a shop and buy myself a pack (following my leakage mentioned back here).

I decided to get them because I've had to do some travelling for work to meetings and events, as well as trips out with my family.

In actual fact I've not had to USE them (if you know what I mean) - obviously I'm not saying that this is any kind of a cure but just having that protection seems to have removed the thought that i will need the toilet from the front of my mind.

Plus they look super-sexy too!* 
(* please note - they don't, but it's still better than running to a public toilet with damp trousers)

Anyway, I've got an appointment with a Urologist coming up in a couple of weeks. More pee-pee talk later.

Speaking of appointments, I've started seeing the Neurology Outpatients Therapies Service again - walking any sort of distance is still an issue. In the two sessions I've had so far, the Physiotherapist has discovered that my problem seems to be that I'm using my toes to compensate for the lack of control in the rest of my legs, especially the weak muscles in my shins.

(i know! who knew shins had muscles??)

I know some people really hate physiotherapy (and physiotherapists) but i love it - i find it fascinating the way that the human body will try to fill in the gaps in itself - "the shins aren't pulling their weight so the toes are going to have to step in" or something.

(and yes i really do still think that the image below is a good representation of this...)

And in the last week I've had my first assessment session with the local Psychological Therapies Service and next week I start my first course of Cognitive Behavioural Therapy (CBT).

I'm really excitied by this (probably not as excited as my Dad, who thinks I'll be able to give him some notes...), and it weirdly has some parallels with my physio.

Physiotherapy is all about being aware of your body and trying to consciously be mindful of posture and gait. CBT (as far as i know after one session) is all about being aware of where your thoughts come from and which particular situation has prompted them, and then coming up with coping strategies for the future.

Hardly CBT.101 but like i say, it's all new to me. A good friend of mine (who happens to be a Clinical & Forensic Psychologist) told me that CBT is a good therapy as it's nice an practical - "a lot of therapy can be a little bit too far removed from the reality of a person's actual experience" - and it's this practicality which appeals to me.

And that was even before my therapist came out with this classic line:

Humans aren't designed - and certainly haven't evolved - to be happy all the time.

Brilliant! 

Obviously, I'm sorry if anyone reading this is a creationist (and to paraphrase the late, great Bill Hicks, I'm not sorry if you're offended, I'm just sorry that you hold such ludicrous beliefs) but that just makes perfect sense to me - if you're in a jungle, an evolved state of anxiety and fear is a good thing as it keeps you on the lookout for (I dunno) a fricking huge beastie who might be looking for his lunch. The old Fight-or-Flight scenario, y'know?

So now that (most of us... well, quite a few of us) have got the old food-and-shelter thing sorted out, where do those senses go? Turns out they're still there, just lying dormant until we hit a bump in the road, when they go into OVERDRIVE.

Well, the two week holiday period i wrote about here has been and gone - i had a really good response to my post on Shift.MS, some people saying they would never dare to go abroad with their kids while they (the parents) have limited mobility, others saying that you just need to let the airport know that you'll require additional help.

So we never went abroad, for numerous reasons, most of them financial. Instead we had two weeks at home decorating the study (which was cleared of clutter way back in the halcyon days of Relapse2012) and nice days out with Evie.

That's all for today - phew! Thanks for reading this far.

Working with MS Conference, Nottingham | Multiple Sclerosis Society UK

I'm going to this in a month or so, looks pretty interesting:

Working with MS Conference, Nottingham | Multiple Sclerosis Society UK

"going anywhere nice this year...?"

The recovery from Relapse 2012 continues.

As I moaned on here incessantly, the worst thing this time was the fact that i couldn't do much to help my wife look after our baby girl.

Taking all that happened into account (combined with the British Summer Monsoon Season), my wife is understandably looking at going abroad somewhere for some sun.

Now, since my diagnosis we've been abroad many times - we even got married in Venice in August the year after my DX.

But my relapse ended on the last day of April, which is just over two months ago. And this will be the first time we've tried to leave the country with THE CHILD along for the ride.

As soon as Emma starts to talk about possible holiday destinations, my mind starts racing thinking of packing, airport parking, navigating the terminal, negotiating transfers, unpacking, ... and then doing the same thing in reverse on the way back. All coupled with the fact that we'll be doing this with a baby.

I don't want to let MS beat me on this one. But I do wonder if it's realistic to be looking at leaving the country 9 weeks from the end of a pretty debilitating attack.

I've just asked the question on the Shift.MS forum so I thought I might as well ask the question on here too!

My in-laws have offered to come along with us which isn't ideal but would help with childcare - but even taking that into account, we've still got to do that same long list of jobs at both ends of the journey.

I'm currently still not walking into work (which is a half-mile / five-minute walk) and whenever I do walk anywhere, I need to rest all the time.

Obviously, the other option is that wife and child could go on holiday without me... which would really be a shit business.

Help me, interwebz!

the invisible disability

2nd week of a staggered return to work. The fatigue I wrote about last week is 'manageable' but I have to be majorly careful about doing too much.

I've had relapses in the past where I've returned to work full-time way too quickly - hence the 'softly-softly' approach.

But in the past week my boss has been telling me I look really well, while at the same time gently asking me when I think I'll be back in the office full-time.

I've heard MS referred to as The Invisible Disability - I guess this is what they mean:

• I come to work everyday
  
• I'm very conscientious
  
• I'm good at my job
  
• and apparently I look fricking great!
  

However, when I finish my 4 or 5 hours, I go home and I'm completely beat. Which people don't see.

This doesn't make me special or unusual, and most people reading this will have EXACTLY THE SAME THING happening on a fairly regular basis.

Just sharing, is all.

See the MS Society's excellent 'Fighting Back' report for research into the affect diagnosis can have on MSers careers, amongst other things.

puppet on a string

So I've just finished my first week at work since the middle of March. I did between 4 and 5 hours a day, with one day working from home.

Everyone at work has been cool, pleased to see me looking well, and I did some good bits if work that no-one else can do. Which is nice.

On the whole, things have been fine with the reduced hours.

But like the majority of people with this 'wacky' disease, I've had to endure attacks of MS Fatigue before. And I had one particular instance of that this week.

I was chatting to a colleague about this and that, and when he left the room it was just like someone had cut the strings on a puppet. Or as if someone had pulled the plug out of a jukebox while it was playing.

Mentally and physically it was 'Game Over' for me for the next 24 hours.

It was bonkers. MS Fatigue is the most common symptom that we get, and it's the hardest one to try to explain.

Which is why we resort to talking about puppets and jukeboxes (well, I do anyway).

And I know everyone gets tired. And I'm guilty of just saying "I'm tired" when in reality what I need to say is, "I'm physically and mentally exhausted".

But who has the energy?

GROANS!

lighten yr load

My Dad and me concluded the 'life-laundry' I spoke about before. I was moving a lot easier so I ACTUALLY LEFT THE HOUSE and accompanied my dad to the tip with two car-loads of crap. We've even managed to clear our garage - we could almost fit our car in there now we've got rid of 2yrs of dust sheets, boxes, saucepans. Like I said before, recommended.

The main impetus for all this is that, once I return to my job fully, I'm going to request the option to do more from home.

There's no part of my job that I can't do from home (apart from endless, pointless f**king meetings). And fatigue is a big part of this condition, obviously - by the time I've showered, shaved and dressed myself in the morning I'm usually totally banjaxed.

And before you ask, yes, my (male) boss does comment if I come into work without shaving or in my 'scruffs'. Slightly Tongue-in-cheek, but it IS noted.

So the study is getting sorted to enable me to do this, and maybe create a spare bedroom, too. At the moment if I'm a bit insomniac, or if my leg spasms just get a bit too 'disco-leg', I disturb Emma, and that's no good.

So. 6 weeks (more or less) of continuous relapse later. This has been the hardest one yet:

• The weather has been uniformly SHIT.
  
• Oral steroids absolutely SUCK BALLS. Yes, having a cannula in yr wrist for three days of trips to the hospital is nobody's idea of fun. But at least it's going straight into your system. Having to digest them fully first just made me feel dreadful.
  
• This is the first relapse since we've had Evie. The hardest thing has been being unable to help out more with her care. When I gave her a bath the other night for the first time since this all started, it was really emotional for me.
  

But despite all that, I've managed to achieve quite a lot (here comes another list!):

• LIFE LAUNDRY.
  
• I've got back involved with this blog. I'm not even sure how helpful or informative it is but it has certainly helped me over the last couple of weeks. If you're out there, the odd comment wouldn't go amiss.
  
• Oxybutynin is definitely helping me with my bladder issues. Cheers.
  
• I've referred myself for some Cognitive Behavioural Therapy.
  

I was diagnosed 6/7yrs ago and I don't think I've ever really dealt with it. Plus I've got a very short fuse and tend to Sweat the Small Stuff - where's my wallet, where did I park my car, that sort of thing. And there are a lot of great things about my life.

So why am I frequently down about it and myself?

This condition isn't going anywhere anytime soon. Might be a good idea to get some coping strategies.

PS - My appointment is in September...

Going to try going into work for a couple of hours tomorrow. Let's see how long it takes for that to wind me up.

now you tell me...

Just got off the phone to the MS Nurses.

When I got my bumper pack of drugs last week, the consultant gave me the Lansoprazole (as mentioned before, these prepare your stomach for the intense oral steroids).

He said he'd put a couple of extra capsules in for me but didn't make it clear that these were an ESSENTIAL. PART. OF. THE. TREATMENT.

Apparently, if you finish the 'roids and stop taking the Lansoprazole, it can lead to chest pains, heart palpitations, panic attacks, insomnia.

Sound familiar?

These drugs didn't come with any literature - y'know the sort of thing that lists every possible side effect under the sun, that used to scare the bejeezus out of me?

Probably could've done with one of those...

one step forward...

So I finished my last dose of oral steroids - that's one last meal ruined!

My mum is trying to super dose me up on oily fish and made some fantastic mackerel pate. Which was totally screwed. Bleurgh.

Later that day, I had a bit of a life-laundry session with my dad, which was cool. Over the last 7 years, I've:

1) got married
2) rented two properties
3) bought a house
4) had a child
5) been diagnosed

(not in that order, obv...)

The point is, I seem to have never thrown anything away - not in some freaky, bottles-of-piss everywhere sort-of-way. Just receipts. Inventories from rental properties. Endless documents for houses we didn't buy.

And I thought I had a tidy mind.

My dad came over with his shredder and the house feels LIGHTER, somehow. Recommended. But you're probably way more organised than me.

So Tuesday was my first day without drugs. And here I am writing this with chronic chest pains at 1am on Wednesday morning. Don't know if it's connected or what, but it's pretty sucky.

I've come downstairs to waffle on like some MySpace saddo in the hope that I don't wake anyone else up.

Just trying to use the next couple of days to rest up and get my strength back.

Then I need to decide what I'm going to do about returning to work - going back full-time straight away, or staggering it with some part-time work and doing some stuff from home.

Oh Dear Diary, whatever should I do?

heavy metal

Well, the fact I started writing this at 5.30am will be the giveaway to most people reading this - steroid-induced insomnia! This was actually the latest I've slept in since Thursday.

I saw the Neuro in Nottingham on Thursday and after a pretty thorough consultation, we agreed that a course of steroids was the best option.

(incidentally he looked a bit confused as to why I'd waited so long to come in - hey, I was just acting on your colleague's advice and trying to be a good boy!)

As the clinic is closed over the weekend, a 5-day course of oral steroids seemed the best option - aside from cutting the trips to the clinic, the idea of having a cannula in my wrist all weekend while trying to fend off my grabby 1yr-old daughter sold the oral option to me.

Here's my current diet o' drugs

Breakfast

• Oxybutynin 5mg - to reduce the seemingly endless need to urinate.


• Mebeverine 135mg - to regulate "fecal urgency" (what a lovely phrase!).


• Gabapentin 300mg - for the crippling pains I wrote about before. To be honest the steroids have been taking care of them but you have to take Gabapentin on a reducing dose, you can't just stop.

Plus my standard multivitamins and fish oil supplements.

Lunch - where the fun begins

• Lansoprazole 30mg - oral steroids are so intense that you have to line your stomach with these little beauties 30-60mins before you take them with food - nice.


• Methylprednisolone 100mg x 5 - the main course, if you like.

Now if these bad boys had a advertising slogan it would probably be something like:

All the metallic taste you know and love - now longer lasting and in a convenient* tablet form!

*stomach-churning

Obviously, you have to take these with food so everything you eat tastes like shit too.

Plus if it's a Rebif day, I have to take Ibuprofen before I inject in the evening.

So I'm 3 days in. The oral variety doesn't have the "jolt" you get from IV steroids, but yesterday I was able to stand and prepare Evie's lunch. I haven't been able to stand that long for ages so this was a big deal.

Then I managed to vacuum the house (in stages - I'm not insane).

But the hardest thing about this relapse has been how little I've been able to do round the house.

Previously it's just been me and Emma. With Evie on the scene, Emma's had to bear the brunt of the housework and the childcare, as well as returning to work part-time.

Our families have been amazing, taking us to appointments and getting us out of the house, bringing food parcels, etc.

And it can't be massively easy for my 66yr old mother (used to accompanying my 91yr old grandmother to appointments) watching her youngest son staggering around a clinic.

Ah well - last day of steroids is tomorrow.

update

Still off work, still no change in my condition, still no sign of it improving.

The weirdest thing about this relapse has been the pain, something I've never had to deal with before (MS related, anyway).

I remember when I was first diagnosed, I read about people using cannabis for pain relief and I always thought, "what pain?". This relapse, it's been really intense, knocking me sideways at times.

FULL DISCLOSURE
I smoked my share of weed in my younger days (in fact, I think I smoked most of your share as well) - has all the stuff I smoked finally 'worn off', and now I get to enjoy my MS pain?

Anyway, FIVE WEEKS in and enough is enough. Have called the MS Nurses and made an appointment for a Steroid assessment - earliest they can get me in is Thursday morning.

Cue 3 more days of me sitting on my butt on my own.

Now - I always thought I was a slacker. Turns out I'm really conscientious (see the last two weeks of working from home while recovering) and I'm going slightly mental.

An aside: Oxybutynin has totally sorted my bladder issues out. Gabapentin is kind of sorting my pain out (now I'm on 3 tablets a day, anyway).

only connect

I'm writing this on a grey Bank Holiday, at the arse end of two weeks off work.

Actually, I say that but it's not strictly true. I had one week off and for the second week I was able to do some work from home.

Now I'm a bit of a nerd and I love me some technology. I remember the first time I used LinkedIn to control my shitty work PC with my much sexier Mac Mini was mind-blowing. Especially when I used it in conjunction with cloud storage from DropBox.

(by the way, if you sign up by clicking that link, we'll both get a bit of extra space!)

But however great all this stuff is, it does mean that you're not really ever off work. Which when you're trying to recover from a MS relapse without steroids, probably isn't amazingly clever.

I've been pretty lucky, though. The weather last week was unseasonably warm so I could sit in the garden with Evie and Emma.

(as an aside, a couple of days back it was snowing...)

The main thing that's been bothering me this relapse has been how it has affected my time with Evie.

Now I always knew that Emma would make a fantastic mum. But I wasn't totally sure about me as a dad.

Over the last (almost!) year, I've got more confident and relaxed. But this relapse has taken all the strength from my right-hand side. Which means I can't do my usual dad stock-in-trade moves - wrestling, tickling, roughhousing, etc. I even (seriously!) miss changing her nappies - just because it's one of the ways you take care of her, y'know?

This means the last couple of weeks have put a lot of pressure on Emma and our amazing families. Which doesn't make me feel all that great, obviously.

By the way, the Oxybutynin tablets almost work a little too well. They give me major DRY MOUTH but they do seem to calm things down a bit as far as urgency is concerned. One week in, I'll keep you posted.

I'm also going to be trying some Gabapentin tablets for nerve pain, presumably due to walking heavily on one side.

Also waiting for referrals to the Physiotherapists and a Cognitive Behavioural Therapist.

At this rate, I will soon be on my way to becoming NORMAL, if not a FULLY-FUNCTIONING MEMBER OF SOCIETY.

Which could be good news for everyone.

slippery when wet

So last week, we went for a holiday. It was really nice but as mentioned before I was having some killer mobility issues.

We were staying in little cottage in the Cotswolds - ooh, accessibility tip! The pretty village of Broadway is a dream:

• Award-winning toilets!


• Dropped kerbs all over the place!

...so that was the good day on our holiday.

The next day we had a bit of time in the cottage before going out to a National Trust property.

Now all through this holiday I had to remain aware of where the toilets were - I know this is something that us MSers have to deal with. But my 'urgency' has been getting pronounced and has proved to be more and more annoying - I've missed meetings at work where I've had to travel, for example.

This was the first time I didn't make it to the loo on time. I know, worse things happen at sea and all that but still pretty humiliating (thankfully I had a change of clothing with me).

So when we got home I made appointments with my GP and the MS Nurses to get stuff sorted out and to see if my lack of mobility was actually a relapse or not.

The MS consultant we saw was great. He said it comes down to semantics - you could call it a 'blip' and it's an off week or so. Call it a 'relapse' and it becomes a whole 'nother level of PROGRESSION.

I said that it felt like a much weaker relapse than the one I had two years ago, with the Rebif maybe putting the brakes on. As such he suggested I should see how I feel after a week of rest, rather than jumping straight into steroids.

He also put me on a course of Oxybutynin tablets to get my crazy bladder to calm the hell down.

A lot of the problems I'm dealing with at the moment are psychological. So I'm looking into doing some Cognitive Behavioural Therapy.

It's weird, but since I was diagnosed, I've never really had a chance to talk about it with anyone outside my family. It's kind of like, "ok, this us what you've got, call us if you need to, and good luck!"

Might be good to talk?

suck and blow

Ok, that's enough faux tension. Long story short (if there's anybody still out there):

- within 30 minutes of arriving back from holiday, we were joined by 2 groups of family members - one from my side, one from Emma's.
- each arrived with a separate story of a relationship ending - one a broken-off engagement, the other a marriage with two kids.
- in each case the people we're closest to (there's no nice way of saying this) were/are at fault.
- being the only link between two separate but weirdly similar situations put our little family in the uniquely shitty position of the fulcrum (or apex?) of crap.

I know, we're not the people going through it but at one point I started getting panic attacks. It was really stressful for all involved and I'm thankful for the fact that it didn't bring about a relapse.

Yeah, sucks for me right?

We had a really nice weekend away (this should've been the wedding weekend! I know, how cold are we?!) and Evie's first Christmas was great.

All of which made it difficult to write a MS themed blog - I'm still conflicted about what I'm writing this for.

However some issues (mostly toilet-related, I'm afraid) continue to cause me trouble. And within the last week I'm having some killer mobility problems.

So I appear to be looking down the barrel of a Relapse - with the type of MS I have it was always "in the post" (or "dispatched from the warehouse" if you prefer). It was only ever the actual 'date of delivery' that was in doubt.

But this is the first relapse I've had since I started my Rebif injections. And this is way lighter than my last one - like with the volume turned down, if that makes sense.

Got an appointment with the MS nurse team tomorrow so should hopefully have more of a clue then!