Monday, August 9, 2010

Follow Up to Doc Appt.

I crashed big time this weekend, so I knew already my follow-up was not going to go well (or rather he would see a true picture). I am going for Lyme screening and he is setting me up with a neuro exam/consult. He wants me out of work SOON, and currently feels that I shouldn't be working more than 3 hours per day and that I shouldn't be driving at all. I am now down below 100 pounds as well.

He strongly believes I do have some brain "damage" / "issues" going on, and is surprised that they are already noticable to others.

I am regressing as he put it.

He is now indicating that I am already disabled and that WHEN I go out of work, it won't be so I can get better, it will be because I can't work, if I happen to get better that will be a bonus.

Sometimes reality sucks.

So, I will probably be out - shortly after my neuro appt. I truly don't know how much of this to share with my husband, he is not going to take it well.


  1. Well really what else can you do ? You can't keep it from him. I suppose you could drip feed him with it but you're prolonging the agony for you both of you. Maybe it would be best to tell him straight but with someone else there who you feel will support you ...or go to docs together ?

    Thinking of you (*)

  2. Cusp -

    I will tell him tonight, you are right of course and I can't prolong this any longer.

    Thanks for the support. :-)

  3. Dawn, I'm so sorry to hear things have been getting worse (leg problems on top of everything!). I noticed that when I finally stopped pushing myself endlessly (working full-time and all that) and started resting more, it felt like my body started acting up MORE. More tingling, muscle and joint burning/pain sensations, etc. As if it was coming out of shock from endlessly grinding it down. Don't know if it's the same for you maybe.

    Anyway, good luck with your husband. I really hope things go better than you think. But either way, not working and letting your body recovery is the absolute best thing you could do for yourself, regardless of what anyone thinks. Big hugs!!

  4. So sorry to hear where you are at. I know how dreadful and daunting it all is (and continues to be) .... but at this stage all you can do is go with the flow .... Regarding the brain damage issue ... unfortunatly in my own experience this is true ... my short term memory is getting worse and worse and my IQ is falling .. my ability to spell, calculate etc is all just declining. My Dr said not to be stressed by it ... it happens to everyone with age and it's just happing to you sooner. He also said it is possible to regain some of the brain stuff ... the nerves and transmitters etc can regenerate if you are well. The question is will we ever be well?
    I found that when I was still pushing myself I was declining rapidly but once I quit work and stopped pushing I got somehwat better over time ... it was reassuring! I have since then gotten worse in someways and better in other ways. The reality is we are disabled and the best way to live with that is to start living with it rather than pushing through it.
    No idea about your hubby ... if you really think he is not gonna hear it then perhaps you should wait till you have some test results to back up what you need to tell him??
    It's such a hard road, thank God for the internet, this would be so much harder without being able to connect with other sufferers!!!

  5. Dawn,
    Hi there,
    I have had ME/CFS for ten years now and it has taken my hubby the best part of that to be comfortable enough to talk about my illness.
    I have had some truly tough times with it, and even then he couldn't acknowledge it at all!

    I drip-fed him a little information and often, it eventually worked for us! Also, talking frankly to someone else, whilst hubby is in the room is what got the ball rolling here. I think he was able to listen and take it in without being in the position to have to respond - the pressure was off!!!

    I have been on the same page workwise, but for the first year of my illness I couldn't work. It was financial worries and pride that sent me back. It is harder than anyone can imagine isn't it? Spending your energies at work, only to fall into bed totally finished at the end of it.

    In my case I ocassionally have to stop work and take time out to get a better level of health back, now I can do 4days and most of the time it is manageable, with some time for myself and my family at weekends.

    Take care of you Dawn.
    I also Blog,

    maybe see you there!
    thinking of you,

  6. Thanks for all the support everyone!!! I have no idea what I would do without all of you out in blogsphere.....((Hugs))