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In my last job I was working 30 hours a week in a post I really liked, 6 hours a day,

 Monday to Friday. Gradually I found myself getting tireder and tireder, with increasing headaches and the old familiar muscle pains. I started going to bed the minute I got in from work and spending more and more of the weekends in bed. After 9 months in that job and the last 2 or 3 being a real struggle, I had to admit defeat and gave in my notice. I had been off sick too much and was taking more and more pain killers. I realized how hard I had been pushing my self after I gave in my notice and felt a tremendous sense of relief.

 

 

I am in another job now with reduced hours, no more than 4 or 5 a day and so far I am coping. Fortunately the field I work in (social care and support work) is short of workers so my poor sickness record hasn’t proved a big problem. Also I am low down in the pecking order. If I was a senior manager I think my bosses would look rather askance at my time off sick.

 

 Being a worker with ME means that I still spend quite a bit of time resting up when I am not at work. It doesn’t leave me the energy to do voluntary work and my social life is a bit limited. However I do like being at work and would encourage others to give it a go, but start very slowly and keep your benefits at first, as a safety net. I don’t know how much pressure the benefits people are putting on people with ME and other disabilities to return to work. Helping and supporting people with ME, who want to work is ok, but forcing people to work who are very ill is obviously not acceptable.

 

I realized recently that there is more understanding about ME on the part of employers and also we have some legal protection in the form of the Disability

 Discrimination Act. I was told that if I needed my working hours to be reduced because of ME, my employer had by law to do it because ME is recognized as a

disability. This is helpful and allows for a bit more flexibility around employment.

 

 I hope this article has been helpful to anyone with ME thinking of trying voluntary work or paid work. I’m sure the Committee of the ME Network would welcome help from members and they (the Committee) are a warm friendly bunch, so don’t be shy. Voluntary work (and paid work) can lead into all sorts of directions that you had never thought of. Give it a go.

 

   Penny Lilley   

 

 

 

 

 

   Thank you Penny for sending in this article.  It was good to hear from you , there would not be an ME Network if it hadn't been for you in the beginning ! 

I hope members will take encouragement from your words

Best wishes to you and the family  and hope to hear from you again.   

                                                                                                                 Norma