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)

By way of introduction...

Hi

for anyone that may be discovering this blog for the first time, I was diagnosed with Relapsing Remitting MS in June 2008 and started my magical brain as a means to keep in step with things and let friends and acquaintances know how I'm getting on (cactus hands today, folks).

Anyway, if you don't know where to start, why not read my MS History?

• Part One 
• Part Two 
• Part Three 
• Part Four 
• Part Five
• Part Six
• 2009 update

Thanks to the MS Trust, by the way, for linking to me from their Facebook page. Reespec back atcha!

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.

World MS Day

Pet peeves - part one - the MS makeover

Imagine - you have woken up with instant jet lag. The world is spinning. Your fingers are feeling fuzzy as you fiddle with the buttons on your shirt. Your vision is playing tricks on you. You are moody. Your legs may as well be encased in concrete because you can barely lift them as you walk and you know... you just know... the odd creeping, squeezing sensation that starts in your calves will kick in later and that no painkiller will relieve it. You struggle along but to all intents and purposes look fine on the outside.

Then you start talking to someone you haven't seen in a while, a former colleague or a relative perhaps and they ask about your health and you respond with some vaguely optimistic small talk. Then as you are leaving they say....

(cue fanfare) "It's good to see you looking so well, anyway"

"Thanks."

This multiple sclerosis is doing wonders for my appearance. No-one ever complemented me on the way I looked before I was diagnosed and now I get complements left, right and centre. It must be doing something good as it eats away at my brain and spinal cord - it seems to have given me a makeover in the process.

My pet peeve is this: I have no problem with people telling me I look good, healthy or whatever. Bring it on! I can live with that. It's natural for people to want me to feel good and when they say it, it shows their heart is in the right place.

What gets me down is that I would like to say something along the lines of "Actually, I feel like death. I have good days and bad days but today is a BAD day. I live with the knowledge that this is only going to get worse over time and because it is an invisible disease I can't outwardly display the fact that I am ill, but yes, at least I don't have a cold which would indeed make me look poorly." But I can't. Of course I can't. People are being kind and they are concerned for my wellbeing. They are being friendly.

The last thing they want is some curmudgeon moaning about how crap they feel all the time, because it would frankly get on my nerves if I knew someone who felt the need to remind me at every turn.

It's just that sometimes you want to shout it from the rooftops...

...but then you remember rooftops involve some stairs

...and maybe some climbing

...and then you might have a giddy spell on the way up.

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

MS Awareness

I finally remembered to ring my motor insurance company to tell them I have MS. It made no difference to my policy other than they made a note about my (Grrrr...) temporary license.

One curious fact about MS is that the further away from the equator you go, the higher the incidence of MS. Consequently Canada and Scandinavian countries have some of the highest incidences of MS in the world. Even in the UK, The prevalence of MS is higher in Scotland than in England. It is also higher in the north of Scotland than the south.

Anyway, I told the call centre operative, somewhere in India, that "I have multiple sclerosis."

"You have what, sorry?"

"MS."

"Oh!... OK, you have MS... please wait for a moment..." on hold for about a minute... "Hello? What is MS?"

"It is a chronic degenerative neurological disease."

"Oh, OK, please wait while I check..." on hold again... "OK, I have made a note on your record that you have a neurological disease."

It is World MS Awareness Week next week. I have started early.


PS - Hi to Herrad, Richie and SwissToni - thanks for the recent comments