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ME and Fibromyalgia

kate1966kate1966 Posts: 2Member Listener
I was officially diagnosed with ME over 8 years ago, but was told I had suffered with it since my early 20's and had accidentally managed my condition, a series of inoculations knocked me off my feet and I was ill for a year, taking 6 months of tests to finally diagnose me.  Since then my health has fluctuated from day to day and week to week, I have tried to continue working, had breaks and then returned to work for 6 to 12 months stints, but I find all my energy either goes into work and then there is nothing left for those at home or when I am not working and at home, I feel bereft for the career I should have, worry about my lack of income and get quite depressed.  

In my experience the quality of part-time work and understanding employers in my area is not very good, and I have both been honest about my condition and kept it secret, the former not offering any more support than if I was fighting fit and the latter causes stress and anxiety every time I am having an off week or get hit with another flair up.  I have never thought of myself as disabled, unless trying to navigate the escalator on a bad day, and when standing in a queue for more than 5 minutes brings to me to tears due to the pain in my neck, back and legs, so don't know if I am in the right place, I suppose that's because I am a mild to moderate sufferer.

Being an experienced Personal Assistant and Secretary for many years, I find the brain fog and memory issues make it hard to do a full time job anymore and the thought of trying actually scares me as I have had my share of bullying bosses over the years, but taking a lower level job is equally challenging for its own reasons.  Now at the age of 53 and going through the menopause on top of everything else, I find myself yet again at the out of work stage having just finished a 15 hour a week part-time job as they can no longer afford my wages, a favour from a self employed friend.  I am again looking for something part-time, but there is not a lot out there and most things are more physical than I can manage.  Having never claimed any benefits I don't know what benefits, if any I would be able to claim and have no idea where to start.  It has taken me weeks to just start investigating as I find it quite daunting.  Sorry to babble on, another symptom especially when I am anxious, any advice would be much appreciated if you are in or have been in a similar situation.

Replies

  • pollyanna1052pollyanna1052 Posts: 1,526Member Disability Gamechanger
    Hello there! Oh love, I do feel for you.
    I can imagine the job and career you had, lost and tried part time is such a blow! 
    You still have the wish and motivation to continue with that line of work.........commendable...but difficult to find, especially when the uninvited gatecrasher in your life raises it`s ugly head.

    I wonder if doing some similar work from home is a possible answer...what do you think? Maybe that way you could face a batch of work when you feel up to it. or leave it a bit until feeling better. Plus you dont even have to get dressed, ready for off, but not have to fight the battle in getting to work.

    I had to retire very early, due to disability, aged 47! I loved my job too! There was no way I could continue.
     Another thought...you might think about applying for PIP....this is a non means tested benefit, which can be claimed whilst working,

    I hope you can find some relief to your worries.
    Take care xxx
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