2003-12-16

To Work Or Not To Work With CFS

I thought I'd put this in my diary because I think others might be interested in it too.

This is part of an email I got from one of my dearest friends who suffered from CFS:

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I read your story on SleepyDust and something grabbed me -- the part where you said you felt better and got a part-time job. I've been thinking about a part time job. But then you relapsed big time. Now you have me worried that will happen to me. Your opinion, if you don't mind.

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This was my reply:

When I first developed M.E. in 1995 I was also anorexic. Once I overcame anorexia I had the M.E. left to deal with and although in my mind I thought it had gone away, I think it's severity just 'lessened'. It never really left. So say I had it 100% before I guess I may have had it just 30% - enough to be fooled that I didn't have it anymore basically.

But even when I was 'fooled' I still noticed that I just couldn't handle as much as I had done 'pre-CFS'.

I started by working part time for a relative of mine and travelled to work from where I lived in London with my friends. That didn't last long - by 9 months or so I was on my knees - the commuting was killing me and it was only 3 days a week!

Then I was approached by someone to set up a music production business. After three months or so I moved back home... but the recording studio was in London (where I used to live – doh!) so that meant more commuting! In fact, I ended up commuting but the other way round.

But this time instead of 1 hour and 20 minutes each way, it took me over 2 hours each way. That's over 4 hours of commuting each time I went to work. Even going into the studio three times a week was just killing me.

Anyway about a year later I left the company and started a 'conventional' office job - and my first full time job...

This was a completely different experience. I went for the job because the director needed a personal assistant to help him set up a large company and since I had experience in that area I thought it might be good opportunity. Besides, the pay was rather nice - but I soon learnt that money comes way down the list when it comes down to priorities in life…

…it’s health that comes in at number one...

Anyway the full-time hours were like a slap in the face...I would literally come back from work, eat and go to bed, and feel like I hadn't slept a wink when I got up for work the next day. By the weekend I was so weak and exhausted I slept through most of it and felt no better by Sunday evening.

Day by day I stumbled through - life was becoming a blur.

Apart from the fact that I just didn't like what I was doing (office jobs aren't my cup of tea), I got more and more exhausted and weak as each weekend passed - until it came to a point where I really knew that this downhill struggle was going to come to a nasty end at some point.

I knew the M.E. was coming back and it was coming back with a vengeance...

Then a close family relative become terminally ill. I handed in my resignation and came straight back home. Our whole family life got turned upside down. It was a painful, heart-wrenchingly sad and stressful time to say the least. And what with the stress that came with it, my CFS was back…

…and this time it was here to stay.

That period has got to be the most stressful period of my life so far. And then my dear relative died. The CFS went from bad to worse.

About a year and a half later though I decided I needed something – a project to work on – to keep my spirits up. I decided to create a website for CFS and FMS sufferers like myself. I started working on the 'sleepydust.net' website and realised that I could work at least a little - as long as I bore in mind that I had to work within my restrictions.

Ofcourse it isn’t as much as how much a ‘normal healthy person’ can work. For one I can only manage a little at a time. But the snail wins the race right?

Sometimes I can do 10 minutes or 20 minutes a day – maybe even an hour or two in a really good patch (which is rare). Sometimes though, I can go for several days – even weeks without managing a thing.

But take a look at sleepydust.net – I did that - a practically housebound CFS sufferer - sure it took me the best part of two or three years and I’m still plodding away building it slowly but just that little bit of work now and again has turned into a mountain…

And the great thing is that I don’t see it as ‘work’ – because I want to do it. I like to do it. I want to help others out there like me to realise that they can do great things – with or without CFS or FMS.

Although the focus is on CFS and FMS, I’m going to concentrate a large part of the site on helping people to realise their potential, to work from home and earn money by operating within their limits. The key word being ‘within’ – well within…

I’m not making any money from the website yet and I dare say I won’t for some time. And because I can’t do lots in a day – sometimes I can’t manage anything at all, then yes it will take a long time – but the thing is – it’s there and it’s growing.

And that’s the key – if you sit there and think ‘eurgh – it would take me years to set something up where I earn money from home’ and do nothing because of that, then just think for a minute.

What you decide now determines where you’ll be in say three years. If you decide now to do nothing, then I dare say nothing positive will have changed for you financially in 3 years. But if you decide to do something…

…if you decide to do something, then in three years time, you’ll have a mountain. You’ll have something of your own – that you’ll have built. Remember – the snail wins the race.

And although I’m not making money now (I’m hoping that one day I will :)). I’m counting on that famous saying:

”Build it and they will come.”

I can't even make dates with my boyfriend until the last minute because my condition changes as quickly as from hour to hour!

And that was my problem beforehand:

When I was setting up the music production business, I tried as much as I could to come into the studio 3 times a week during 'acceptable' hours but I was really struggling with even coming in just in the afternoons.

Come my first full-time job where I didn't have any choice but turn up when I was supposed to for an unmanageable amount of hours (normal office hours for everyone else) I lasted 3 months but believe me by the 3rd month I was a wreck.

So I would say that if you have CFS and are considering taking up a part time job - or any kind of work, that you sit down and look at the hours you keep at the moment.

Do you get up at the same time each day? When do you need a nap?

Is this a good patch? A long term one? When you have a bad patch how badly affected are you?

How often do you manage to go out?

How much do you manage to do when you go out? How long?

If you answer all these questions then try to find a job to fit your criteria then you should be ok.

For heavens sake don't do what I did and find a job and try to fit yourself into it because CFS just doesn't work like that.

And don’t rule out earning your own money by working from home.

It is possible and you can do it. Millions of people work from home. It’s not rocket science. You just need to know what to do and have the perseverance to put the work in – even if it means doing a little whenever you can manage.

I’m building Sleepydust to help CFS and FMS sufferers do just that. I haven’t got round to writing the ‘work from home’ section yet (I’m finishing up the depression section at the moment), but I’ll put everything I’ve learnt, hints, tips, guidance, info and freebies I’ve come across in the section so that others have a head start in working from home themselves.

(If you would like me to let you know when the ‘work at home’ section in online you can sign up to my free sleepydust.net newsletter. You can sign up to it by going to www.sleepydust.net.)

So there you go - that's my take on the old 'to work, or not to work - that is the question when you have CFS!'!

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