Friday, June 11, 2010

Update on Work & Health Situation

FOR NOW, I'm still at work - but the days are counting down. My doctor wants me to take at least one month off to rest and "treat by body as if I had mono". He has informed me that FOR NOW he is leaving the decision up to me, but if I decline much further he will have to insist.

When I went to the doctor on Wednesday, I was running a low grade fever, had VERY swollen and tender lymph nodes and am now down to 103 pounds. As a reminder I weighed about 122 in January but even more alarming is that I weighed 119 March 1.
I am wearing down - my body is not handling this well at all (which everyone I know is shaking their head in understanding).

I took yesterday off and can't even tell, I had to get a ride into work today because I was afraid to drive and doubt I will be here all day.

Still alot of family misunderstanding going on right now. My husband is slowly understanding but still believes if I put on weight I would be better. I am seeing a nutrionist soon but tried to tell him that is a concern but not a "cure". (My doctor also told me that if I get below 100 pounds I'm risking being hospitalized for my weight). There is concern all around about the financial impact of this and I am concerned about if I can't return to work after one month (which we all know is a possibility).

I know the right thing is to take off work and put my health first. I'm a planner (which I'm sure is known by now), and this is not settling well in my mind at all.

My "fabulous" insurance company is well known for delaying and refusing claims for CFS - since it's considered a "self-reporting syndrome" and I'm afraid. I will HAVE to have that income or things will be going badly fast at home. Which is why I am asking for advice because I truly don't know what will test etc could "help" my case.

My doctor told me to call him WHEN (not if) I am ready and he is happy to help me with all the paperwork.

I had a dream the other night that I couldn't get out of bed and my husband was trying to get me to go to the hospital - I'm afraid it's a sign.


  1. Hi Dawn, So hard to know what to say or how to help now. I know that UNUM has all sorts of fingers in many pies including in UK. None of the Insurance or Pensions companies look very kindly on diagnosis of M.E. to be honest. Having sais that mine will not give me any lump sum for permanent disability but they have paid the premiums on my pension plan for nearly 10 years now with regular 6 monthly check ups and questionnaires. I'm grateful for that at leats.

    All I can say is I hope that you can resolve things asap because the stress of all this is def. not helping you.

    Hugs (*)

  2. Cusp -

    I'm glad that you have been able to receive the premiums on your pension plan at least - and I know they don't look very kindly on the diagnosis - I don't understand - even if there is not definative test - it's obvious I'm VERY ill - but it seems that's not enough. Yet, another problem of not fitting in a neat box.

    I also hope it can be resolved soon - the stress and trying to hang in at work is not a good combination.

    Thanks again (Hugs)

  3. This has got to be the most stressful part of the illness .... working out how the hell you re-arrange your life without sinking. My private health insurance wouldn't help in any way at all but I was lucky enough to convince someone in the public system so I receive a bit of disability support pension. I get 2/3 the full payment which is enough to pay for groceries and basic bills. With the new medications I am trying I am still down about $200 per week and my saving aren not goingto last for ever! So ... I totally understand your fear. But unfortunatly, what will be will be and at the end of the day you just have to find a way to go with the flow ... once you do manage to get some of these things sorted you will at least have the stress that come with uncertainty lifted!! I will post something on my blog directing people to yours in case someone has info that can help! xx

  4. There are 2 sorts of governmentaid ( benefits ) for people who are sick and unable to work in UK: Incapacity Benefit and Disability Living Allowance. Very basically the first is for those deemed too sick to work and the second classes you as disabled.

    It was relatively easy to get the first though it's not much money. I have been on IB for about 9 years and been through various reviews and tests/medicals. You'd think that after all this time they'd recognise that I could qualify for DLA but its much harder to get and I have not been successful. The problem is that this condition fluctuates so this time last year I was in relapse and could barely get out of bed for about 9 months. ATM I can drive short distances again and do some shopping etc. if I'm careful about what else I do.

    Now IB is proving v difficult to get and also difficult to stay on because they have introduced an ability-to-work test and, surprise, surprise, most people with M.E. are deemed able to work : saves Govt money and makes us all look like malingering skivers.

    Same world over and UNUM are very fact the whole insurance industry is very powerful and have had great influence here on Govt. attitudes and linked with the psychiatric lobby in UK which holds sway in everything to do with M.E.

    As I believe you good people in the United States of America say 'It's a crock !@ :O)