Experience of fatigue

Up to eighty-seven per cent of people with MS, including myself, experience fatigue at some point. It is important to us that people don’t think fatigue is the same as tiredness. It is the most draining experience imaginable and it can happen for no apparent reason.

I went to a talk by an occupational therapist the other night on fatigue and it’s management. As part of his presentation, he included quotes from some of the people with MS he has consulted with over the years.

I thought it would be useful to re-quote them here as I am sure these statements will resonate with the fatigued among us and go some way to help explain what it is like for others:

“Fatigue can literally reduce me to tears, for no reason, I just find I’m crying – it’s like the plug has been pulled out and my energy, almost my life feels like it is going down the drain…”

“I feel like I’m in a jail cell as I’m so tired all the time…”

“It feels as though my legs are full of lead, it’s literally like wading through treacle trying to do things…”

“It hits me like a wall and then I can’t do anything… There’s no real warning to it happening. Sometimes I’m not even sure if I’m awake.” (Oh boy, yes!)

“It’s hard to describe to someone that you’re feeling fatigued and tired when you’ve not actually done anything. I used to be so active.”

Prior to my diagnosis, when I was going through the darkest hours of a relapse, I had a number of afternoons at work where I had what can be best described as a waking sleep at my desk. It was deeply worrying to say the least and I remember the thought “What’s happening to me?” playing on a loop in my head.

Perhaps the hardest thing about fatigue is that it is invisible to everyone else. I’m not being lazy or unhelpful and I can still do everything I could do before, it is just that sometimes I can find everyday tasks exhausting.

Further information

• Fatigue factsheet (MS Trust)
• Living with fatigue (MS Trust)
• MS Essentials: Fatigue (MS Society)

MS Explained

Just a note to say that the MS Trust (UK) have updated their marvellous booklet MS Explained.

This is a little bit more involved than some of the literature out there. While not for everyone, it explains the neurology and immunology aspects of MS very well in layman's terms. I would heartily recommend this publication to the newly diagnosed. In the last year and a bit, I have read up on MS from various sources, gorging on the information within. I am pleased to report that the MS Trust publication had a lot to teach me. I know which parts of the brain have been affected causing my diplopia and nystagmus, for instance.

If it's a more general leaflet for friends and colleagues you're after I would recommend the MS Society's "What is MS?"

If you live in the UK, the MS Trust can send you a copy of MS Explained for nothing. You can also download it for free wherever you are (along with numerous other publications), just click on the link below.

• MS Explained

As if by magic, a support network appeared

Two items of fantastic news here in North Derbyshire. Firstly, our wonderful MS nurse has teamed up with the local MS Society branch to organise a series of weekly talks/discussions/lectures titled "Getting to grips with MS" for the newly diagnosed. Topics are to include exercise, benefits, developments in treatments, coming to terms with the diagnosis, fatigue management, employment issues amongst others.

A lot of ground that these talks cover, will be stuff that isn't relevant to me, things I already know or things I think I already know. I think the main benefit for me, will be the chance to meet people in a similar situation, share experiences and feel a little less isolated.

In another new development, my local branch of the MS Society is organising a series of monthly drop-in sessions at a local surgery for people with MS or their partners/carers to have any queries answered, access MS Society literature or simply to network with others over a cuppa.

I don't normally interact with my local MS Society as the people who attend the social evenings tend (this might be a little unfair) to be in an older age bracket. This is an issue that the MS Society has recognised nationally, judging by the voting slips that were sent round recently. I guess the EMYAMS facebook group is one outlet seeking to redress this.

It would be interesting to see if other areas have similar schemes for reaching out to people, or if there are any innovative ideas out there.

ffffffaaaaaaaatiiiiiiiiiiiiguuuuuuueeeeeeeee...... er.. [ctrl-alt-del] Damn!.. Didn't work.

I have been reading a recent issue of ms matters (quarterly MS Society magazine). It had invited readers as part of MS Week, what they thought was the most common misconceptions around the disease - usual stuff - wheelchairs; appearing to look well etc.

One of the more common misconceptions centred around fatigue, how it is generally percieved as being a bit tired or even plain laziness.

The only way I can describe full-on MS fatigue is, imagine you are working on a computer and you want to install a new program or you are downloading several megabytes of information and you PC crashes. Everything freezes, the egg-timer doesn't look like it is ever going to be anything other than that indefinitely.

Having MS fatigue is just like that - a sudden brain-crash. Nothing works. I have been jolted 'awake' from such moments when I have realised that I have just spent a period of time (seconds? minutes?) where I have been thinking zilch, nada, nothing at all - a completely empty thought process. I just didn't seem to have the energy to think. While that's quite a scary thing to realise, it's even scarier to feel your mind sliding back into that position again only seconds later. It's like my brain has been determined to shut itself down, but without the luxury of a ctrl-alt-del.

Of course, that's the mental side of it. Physically, it's like being in a four-legged race with both legs strapped to sumo wrestlers.

Right - now I'm off on my holidays. Going to do battle with hot weather.

Health talk online

Even with all the support in the world, diagnosis of a chronic illness can be a dreadfully lonely experience. While the MS Society and the MS Trust and the nurse assigned to me were all utterly wonderful when I was diagnosed, I think what I needed (need) more than anything was to connect with other people who have MS and share experience.

Ultimately, health professionals specialising in MS can give you the lowdown on the disease and tell you everything you need to know and more, but it is extremely unlikely they have the disease themselves. It is like a NASA engineer telling an astronaut what it will be like flying in space.

So it is only natural to turn to the web for advice. But it's also widely acknowledged that the web can be a wildly misleading and biased source of information (I did Health Informatics as part of my Masters degree, so trust me).

For the most part, I have connected with others so far, through YouTube, various Facebook discussion boards and blogs such as this one.

When I heard about www.healthtalkonline.org on the BBC1 Breakfast show this morning my ears pricked up. This is a new resource primarily for people diagnosed with chronic illness.

The idea behind it is that you can access interviews from other people with the same condition as you or your loved one and hear their experiences of diagnosis and living with the conditions. The patients interviewed are a representative sample from across the UK and the site is managed by experts from Oxford University.

"Sounds interesting," I thought "must remember to check it out later."

The BBC feature has obviously increased traffic to the site crashing it's servers as it was unavailable for much of this morning, but I have just accessed the site and I can report that there is NO information on MS. Clicking on "nerves and brain" brings up dementia, epilepsy, motor neurone disease, parkinson's disease and stroke, yet there is no information on the UK's most common neurological condition. Even clicking on "living with disability" only brings up
information on autism.

The only relevant info is on chronic pain where apparently one of the interviewees has MS.

I know, I know... early days... give it time...

...but it's very disappointing.

One year on...

I finally made it to my local MS Group's social evening and AGM the other night. Great to meet people and compare notes.

Funny to be in a room full of people who, for the most part, look like they would rather be at home taking it easy.

Also funny to hold a conversation about concentration problems and really having to concentrate. I forgot the name of the person I was talking to and had to look it up later.

Found my usual inhibitions difficult to overcome. Someone asked me if I was "feeling wobbly" as I stood with a cup and saucer and I found myself breezily saying "No... er, yeah!" as the realisation dawned that the questioner was empathetic rather than making mockery. I have been wobbly all my life - always had a tremor, so I get all defensive when it is noticed.

Had an interesting chat about poetry and creative writing.

A couple of people remarked that I was brave attending (I turned up late, halfway through the Chair's address). I didn't particularly think so as I have always remained positive and have never been in denial. I am a bit shy socially, and I was one of the youngest there but was made to feel welcome. One person recognised me from work.

There was a first birthday cake for the branch. Coincidentally, today is the first anniversary of my initial GP visit. See my MS History - Part One.

A number of thoughts and ideas came to me as a result of attending the meeting. I will blog about these later.

MS Awareness week - Limboland haiku sequence

Hello all

It is Multiple Sclerosis (MS) Awareness Week across the globe. To mark this, I have written the following haiku sequence.

Regular readers will know that I was diagnosed with Relapsing Remitting MS in 2008. Limboland was inspired by the journey to diagnosis.

Limboland

no hint of a smile -
for once my doctor says
"take it easy"

on the scan room ceiling
cherry blossom -
the staff retreat behind glass

not crying yet ...
your chin dimples
as you talk

diagnosis
I salute the magpie
anyway

on the news a terror attack ...
my leg
numb again

from a packed lift
a man on crutches
follows me to clinic

new year's eve
the bowl slips from my fingers...
smashes

Just a note on the cherry blossom haiku. Diagnosis of MS requires an MRI scan, but to eliminate other possible ailments including brain tumours an initial CT Scan is performed. This was described to me as being like sticking your head in a giant washing machine and I reckon that's a pretty good description.

I don't know if there is anything similar in other hospitals but at the Royal Hallamshire in Sheffield they have a light box on the ceiling of the scan room with an image of cherry blossom on it. I presume this is to calm the nerves while your head is x-rayed. Cherry blossom is an image often used in haiku, it normally signifies spring which in turn can also imply beginnings.

Limboland is also appearing somewhere on the MS Society website http://www.mssociety.org.uk/ and on my personal haiku blog: http://distantlightning.blogspot.com/

http://www.mstrust.org.uk/msawareness/
http://www.mssociety.org.uk/get_involved/campaigning/ms_week_2009.html

Bleurrggghhh!

That's how I feel.

My better half is wrapped up in bed with a stomach bug, and after a day of feeling a bit bloated I am wondering if I might have the same thing.

I hope not.

Last time I had a stomach bug - a bad one - I spent a night of hell as the MS, particularly the vertigo kicked in. Every movement I made spun the world around a Dave centred axis forcing me to retch as the seasickness took control.

Irony of ironies tonight I was meant to go to my first local MS Society social evening. I have been looking forward to it for ages as well.

But I feel just too bleurrggghhh!