Friday, October 5, 2012


when you need help its often hard to ask - something about the word feels disempowering - maybe its all those disney movies -the damsel in distress thing. however, those of us with this illness need help - and prior to its arrival we were the ones freely giving it.  i spent two nights at a friend of mine's house - and despite calling her nurse betty because she was the best nurse/friend one could ask for - it was extremely difficult to not be in my own home - and micro managing all that i didn't even i realized i tried to grasp at the slightest control of - that's the other thing when you have sporadic symptoms that don't always follow a pattern and on top of it have gotten very use to making your own food so you avoid the unpleasantness of popping benadryl or prednisone for reactions its hard to let others care for you. So when I began to freak out a bit feeling so overwhelmed and just wanting to be home - my friend looked at me and said hey - think back to the first day of college when you went away - remember how terrifying that was - everything and everyone was new - and remember it gets better - it always gets better.  And she was right - its been a long time since i have felt "safe" inside of this body - always wondering when its going to give out on me or over-react to the temperature in a room - the smells somewhere - too much noise or bright lights - too much good news or too much bad news - the tipping point is so fragile and it fluctuates in its stability.  Another of my oldest and dearest friends kept reminding me that i use to do it all - i use to feel safe and if i didn't all i did was push through - that was before - before this illness seemed to rob me of a security net - but i am trying hard to fly without its crutch.  So this past week I have learned to accept help and the wonderful gift i have been given is the more help i seem to accept the more that keeps coming my way.  Yesterday out of the blue I got a text from my old roommate in college - with the message sending you light and love.  The last two days the massage therapist i had met last year - and comes to give me my hydro-therapy treatments could tell i needed help and offered to come today and cleaned my house, did my laundry, and gave me another hydro b/c i feel as if i am fighting off a cold - and she was so calm and sweet - and i forget sometimes what it feels like to be able to give so freely - wanting nothing in return - and it makes me sad because i am a bit tired of being on the receiving end.  but then i tried very hard to accept the help - the help i needed and instead of feeling disempowered it brought me more strength realizing this illness much like the old term it takes a village - well luckily i live in one.


  1. Wow, I could have written this one myself. It is so hard to receive help. Like you say, esp. when it's so hard to give it being sick...and after 10 years I remain on the receiving end. It sounds like you have some fantastic friends and that's at least a great thing.

    I'm so glad you have people who can make life a little easier when things aren't going so well health wise.

    I was thinking on going on a kindof reunion this coming week, but as travel itself and esp. driving makes me so ill (crashed) it would have involved all kinds of people giving me rides etc. so I'm having to back out unless the move the reunion closer to me. A very hard decision sometimes to take care of ourselves isn't it?

    1. very hard - it gets a bit old asking for help over and over - i hope they are able to move the reunion closer - i am the same way i hate to ask people to adjust plans - but then i realize if i was healthy and my friend couldn't make it - i would change plans to make it easier - just remember that - you know that you would do the same to help you friends - or family - or even sometimes a stranger that just needs a little help - be well xo heather

  2. I totally understand - you are so right!

    Before CFS, I did everything...and ok, I admit it, was a bit of a perfectionist, too! Even after 10 years, it is still hard to get used to not being able to do everything for myself and still so hard to ask for help.

    Great post -


  3. thanks sue - that means a lot xo heather


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