Thursday, June 17, 2010

Support Means So Much

Thank you everyone for all of your comments and support. Truly it is a breathe of fresh air to communicate with people that get it and I can tell in your messages that you truly care and are trying to help me from falling far - it really means so much more than you know.

I also, got a pleasant surprise from my uncle who is apparently very knowledgeable about CFS/ME so it's been nice to have an additional family member "get it".

I went to bed at 8pm last night - and slept for 12 hours - it seems like I could sleep for weeks right now to be honest. I'm at work today - but came in late (had to get more bloodwork drawn) and am not staying all day. I'm going to tell them effective Monday to start paying me hourly and stop burning up all of my paid time off trying to make up my hours. Step #1 in my eyes. I am definately being more realistic now after this last "episode" that has now lasted several weeks and appears to still be getting worse (but I'm surviving at least).

For the most part my family has been understanding about no commitments - my daughter was a bit disappointed about something she wanted to do this weekend but quickly realized how it was out of my hands (have I mentioned lately how grateful I am for my adult children and their support and understanding), my mom has been wonderful about it and is totally supporting my decisions (she would also like to see me take time off work), but there are still some in my family that just don't get it and I'm accepting that they just may not get it. This is the first time, I can truly say I feel like I'm putting myself first.

It's still difficult with my husband - but I can't change him or the situation - so my newest goal is to stop apologizing and making excuses for what I can't do - it's ridiculous and I know it.


  1. Your situation is really difficult and one we can all relate to!

    I read that you passed out on Saturday... I had a similar thing from heat and overwork a couple years back. I'm sure common consensus there was that I needed to eat more, but you know how your throat closes up and you can't eat... Well anyway, no one at the time told me (not even doctors), but I was very dehydrated from lack of salt. I was drinking water like a fish but it didn't help. Maybe if you add salty food and electrolytes you will at least be able to avoid blacking out... still, if really sounds like you need to get away from work!

    good Luck!

  2. Thanks for the advice - and for commenting. I absolutely understand your throat closing up - add a bit of nausea to that and it's much easier to say "you should eat more" than it is to actually accomplish it.

    I have to be careful with added salt (high blood pressure also) - but the electrolytes are a great idea - I really appreciate it.

  3. Extra salt has been something useful for me also .... Even before I got CFS I had regular episodes of blacking out, so it's just worse now! BUt you are right, you need to be careful because of the other risks associated with salt.
    Glad you have some family support, would be nice if it were your hubby tho .... give him some more time (don't forget men are stupid LOL) ... take care. xx