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.