Nearly Unemployed

My workplace and I have reached a mutual agreement to terminate my contract due to ill health.  So from the 1st November 2007 I am to be my own woman.

I think joining the union (if you’re not already a member) when you fall ill with CFS/ME is a very wise thing to do.  If you can keep working but need some reasonable adjustments (under Disability Discrimination Act) then they can help support you with that.  If you are unable to continue working then they can help with any problems that may arise between you and your employer.  And ultimately they can help extract you from your contract in the most agreeable way possible.

When I first got ill and took a long absence (a few months) away from work my main aim was to get better and get back to work.  Resume normal life.

I was determined I would not be someone whose life was wrecked by this illness.  I would keep on working.  I had plans once I was back to full hours to negotiate some changes in my work situation – doing one or two days a week from home for instance.

My Occupational Health advisor and I agreed a back to work plan where I would start by doing 4 hours a day.  After two weeks it would rise to 5 hours a day.  Then 6 hours a day and so forth until I was back to full hours.  The timescale for this was about 6 weeks.  I had wanted to start with 3 hours a day and build the hours more gradually – but the strong message from Occ Health was if I couldn’t do 4 hours a day then I wasn’t fit for my job anymore.

So I agreed the plan.  It was (predictably) too much, too quickly.  With my line managers agreement I stretched the return to work schedule.  I upped my hours in fortnightly blocks instead of weekly.  I also worked 2 of my 4 days a week from home.  This meant I could stop in bed and work.  I was protected from stress quite effectively and the work I was given was manageable and realistic.

I started my back to work plan in mid October 2006 and planned to be back to “normal” in the January.

Problem was – although I was teeth gritted, postive attitude, gutsy and determined to get myself back to normal I wasn’t noticing the glaring truths about my situation.  When I did got into the office I was having my husband or brother give me a lift – because I was too tired to drive myself.  When I got back from the office I was totally exhausted, unable to do anything and often needing to collapse/sleep.  I was struggling – but determined.

By the time I was up to 6 hours a day the signs were not good.  At 7 hours a day I felt wrecked, useless, weak, pathetic and a failure.  My husband was the one who put the brakes on – quite literally.  Dressed and in the car en route to the office he pulled into a side street and told me he didn’t think I should go in.  I cried.  He took me to the doctors and we all agreed I was utterly exhausted and very ill.  It was mid December 2006.

I thought that being signed off for a week plus the Christmas break would be enough to get me back on my feet.  My doctor gave me a leaflet about CFS and told me (very gently) if anything looked familar to come back and talk some more.

The reality of what I was facing sank in over the festive season.  This wasn’t glandular fever.  This wasn’t going to take a little while to be back to full speed like another GP had cheerfully suggested.  This was serious.

I paid a big price for that continued strain of battling to stay at work.  A price for increasing exertion week by week even though I was getting weaker and weaker.  For the inevitable increase in workload, responsibility, deadlines and stress as my hours increased and it seemed enough time had passed for me to be able to start coping with it (what average person wouldn’t make such an assumption after all).

I was more ill than ever before. My summer of suffering was a breeze compared to my January 2007.  I rested and made some huge adjustments in my lifestyle and after a month things were a little less acute.  But truth is another 9 months on and my health has improved very little.

So the terminating of my contract is the obvious thing to do.  There’s no-one who can estimate when I will be fit for that kind of work again or even if I will ever be fit.  Besides the job was ultimately too stressful to be practical for me with CFS.  Even if I felt a hundred times better and started a phased return the nature of the work and the environment would be potential triggers for relapse. 

I wish that last summer I had seen a doctor who was up front about my prognosis.  If I knew what feeling tired and taking a year to recover had really meant I am sure I would have approached things differently.  I thought it might take a year to get back to 100% and I expected 6 months of that to be that last little 10%.  it was in fact quite a different scenario.  I wasn’t pushing myself hard, but I was pushing- when in fact I needed to listen to my body a lot more and push a lot less.  I first felt exhausted and had clear blood tests back in late 2005.  It took another year for someone to diagnose me.  Inbetween, not knowing what I was dealing with, thinking that CFS label was for other people not me, I in fact became progressively more and more ill.  I wasn’t able to do the right things because no-one was honest about the problem.  I was in the dark and getting deeper into debility.

You can’t change the past.  A million different things might have made a difference – or done nothing at all to alter the course I was on.

So, here I am nearly unemployed.  But I no longer see that as a failure.  I am, after all, ill.  That chapter of my life is closing and a new one is beginning.  I know work in the future will have to have a different feel and be better suited to MY needs and who I am.

I can’t promise I am always going to feel so positive and relaxed about it.  But I’m ready to make the transition.


10 Responses to “Nearly Unemployed”

  1. 1 Nina October 24, 2007 at 5:16 pm

    Oh yeah, been there……..! Actually, you are really lucky to have your husband who stood up to the plate. I know so many spouses who expect a full-time salary coming in. And then, there are the ones who leave:-)

    I’m glad to hear you’re calm about it (today, anyway:-)

    Hurrah! This is a wonderful milestone — really. Am I right to assume that was far from your dream job?

  2. 2 jowynn October 24, 2007 at 9:25 pm

    When I collapsed with ME-CFS, I had my dream job, the consulting practice I had built from scratch, with clients I delighted in working with. I can identify with your account. And I did find my new vocation.

    If you’re interested in reading my story, you can find it here.

    You may have found yours, with your drawings.

  3. 3 Connie October 25, 2007 at 2:55 am

    I’m sorry but then I’m not. It’s just that even I who’ve been there don’t know the right words. Just know that you can vent all you want. I’ll listen and be there.

    Keep writing about how you’re feeling as you go through the phases of acceptance. And take your time about it too dear. It is tough and sometimes those crying jags are just what the doctor ordered.

  4. 4 Rachel M October 25, 2007 at 6:22 am

    All I can say in short words…
    I know how you feel. I’m listening… And I’m thinking of you.

    I really mean them.

  5. 5 rachelcreative October 25, 2007 at 12:07 pm

    Wow. Thank you – all of you.

    Nina you’re right – it was not my dream job. But there was a time i thought it was pretty close.

    At the beginning I felt I was stepping onto a career ladder that would make my parents proud. Then I found out that all my parents wanted was for me to be happy – being some successful web developer or IT person was irrelevant.

    Then – in recent years it’s been the money. Ever since graduation I have wanted to earn the kind of money that job gave me – and I tell you it was a hard slog to get there. So I measured it as a great job because of the salary for the kind of work I had to do.

    But there’s more to work, and life, than money. We all know that now!

    Truth is I have been crawling throuhg this transition for months and months. But I have conciously not blogged about it, or talked much outside of my family about it whilst I have still been under contract and it has been undecided whether I would go back or not.

    Not that decision and agreement has been reached I feel able to share some of it with you, with the world. In the hope that it might help someone else, and that it might help me too I suppose.

    Thanks so much for your comments and your encouragement. It’s good to know I’m not a lone voice talking to myself 🙂

  6. 6 bbabe October 27, 2007 at 2:00 am

    Rachel, Hey I’ve been there myself. I thought I’d be back at work too but that hasn’t happened. In my case though, I have decided I don’t want to go back to the same kind of work. Hang in there and be proud to be a housewife. I used to think it would be cool to not work for awhile until I was forced not to, maybe I should be thankful for some time off. Chronically ill housewives of the world unite!!

  7. 7 tammyrenee October 28, 2007 at 5:19 am

    I’m another one who thought this was temporary and I’d be back to work by now. What’s worse are the days when you feel so well and ask yourself why it is you aren’t working. Sort of like what Little Miss was saying on her post… you wonder if you are really so sick you shouldn’t be working. Usually, it only takes one bad day to remind me why I’m not, he, he. And then a day like I had today to make me feel I should just bite the bullet and go back to work. It isn’t likely to kill me… maybe just make me wish I were dead.

  8. 8 Growler October 28, 2007 at 9:53 am

    I won’t be disappointed to see you leaving that job 😉

    The job was possibly a good one, some of the people you worked with were undoubtedly good for you (others less so!). But that job was too restrictive for you. It stifled your creativity, your talent and your potential because of the environment you had to work in.

    You are and will be so much better off out of there. You’re already showing what you can now achieve and I for one am incredibly excited about what the future holds for you…and I want to be alongside you all the way.


    PS: You can’t be unemployed, you’re an artist and photographer!

  9. 9 elizabeth November 1, 2007 at 4:21 am

    I’m sorry that you are transitioning out of a job though it looks like you are coming into a place where you understand what your needs are for your body, but still that seems like a big emotional upheaval. Thanks for sharing the process it took to arrive where you are.

  10. 10 rachelcreative November 1, 2007 at 6:34 pm

    Growler – as ever – is right. 😉

    Elizabeth – thank you. I am hoping to blog more about the transition and maybe reflect some more. As from today I am officially 100% jobless.

    And you know … I’m pretty happy about that. Work that is a bad fit is bad for you in so many ways. Money is an essential but at any cost? I’m not so sure these days.

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