though I am no where near as severe as Whitney, I still feel the constant restraints of living within the parameters and confinements of this illness. I sometimes still find myself wistfully longing for a ‘normal’ life, where I could do as I please without always being under the thumb of this disease. Unless you live it, you cannot possibly understand it. I dream of running through the wind, being able to bicycle (last time I tried that I lost my voice and was sick for a couple weeks) Everything has a price. Everything. I’m so, so tired. I do count my blessings and love my family, my doggy and my son more than life itself, but sometimes, I just wish I was free.

So, I will use this poem by Whitney Dafoe to express how I (and Im sure, many others) feel: So many things are no longer allowed when you have this illness. Your world becomes smaller, the inner world greater (which has its gifts, but also its losses). My travel is so limited. Social interactions have to be close to home, always have to sit (or lay down if I over do). I wish to live just one day in my old body. to feel that complete freedom. Its hard to live in this twilight, half-life for years on end. Makes me think of the main character, Tom Hanks in the movie “the green mile’. I am grateful for this life, for all my blessings, but sometimes, it just gets so old.

I wish I could just leave my body. Just be free. I’m not suicidal, just truly tired. So I guess I’m sharing this as a testament. I miss my friend Mark who also had this illness and took his life 6 years ago, but I understand. I hope he’s finally back to climbing his mountains and kayaking and fishing and doing all those outdoor things he so loved to do. I hope he’s happy. Usually I am, I’m just feeling wistful I guess.

So, here’s Whitneys poem:

Imagining but never doing

Dreaming but never experiencing

Longing but never feeling

Seeing but never touching

Believing but never receiving

Envisioning but never achieving

Driven but never accomplishing

Loving but always being Alone

The experience of living with ME/CFS”

Lastly I will say how grateful I am that I can live in seclusion, and that I do not have to work as I would absolutely have to kill myself if forced to do so, I am grateful I am no longer in the workforce even though it hurts to live this life sometimes, I know there are others out there struggling and treading water to survive under the heavy weight and burden of this illness. I am so lucky and fortunate for all I do have, but I think it is human to fight against the restraints….to wish for normalcy, to wish for normal relationships, the ability to stand all day. (I cannot imagine having that ability).

Invisible illness

on top of

invisible illness….

once you get me/cfS, you just start getting a whole collection of illnesses. Most are not seen by others. It is a bit crazy making….always being on alert for the next ridiculous thing. tiring….at least I know I’m not alone. I pray for people out there who can no longer work but are literally killing themselves trying to or are in extreme poverty or homelessness due to this illness….many will opt out as they will feel no other choice. I wish for better healthcare. For more knowledge of this disease that takes things, bit by bit…if you are lucky like me, you can adapt, but some people never get that chance….