… not really 😉
Its really just a continuance right?… I have been totally off blogging for a while now. I’ve just struggled to find inspiration, positives, energy and time… Well, we are heading towards lighter days – with sunlight comes Spring and hopefully some positive energy!
Most in my life is the same as before – yet still, not the same at all. I actually have a darling 2 year old now – TWO!! – and my oldest love will be 5 in a week – FIVE YEARS.. It’s really unbelievable! Where did all those years go, what happened? I get it – life… LIFE happened right there, in front of my flat, fat, face.
I’m not sure how I feel about it – whether to laugh or cry – laugh for having made it this far, for being blessed with two gorgeous little girls, for still being married to my love and best friend – Cry for still being sick. For what this illness is making me miss out on and what it makes my children and husband have to adjust to…
M.E – Myalgic Encephalomyelitis is the invisible illness that rules my life. It has taken me, beaten me to a pulp and spat me out.. Leaving me feeling like I was run over by a bulldozer and in a everlasting flu – leaving me empty, in pain, degraded and full of shame… Ashamed of being sick… To not being able to work and provide my share of expenses. To have to grovel for my means of living. I feel like an outsider most of the time, having to turn down invitations to any social gathering. Made to pass on most activities outside of the home.
How do I make people understand that the few hours of socializing incl. the prep time ect. can take me weeks to recover from – Its so hard to explain without feeling like a lazy moron. Cus “normal, healthy” people can’t… I’ve been there. It hits me hard to admit I was once one of those people who just could not grasp the reality of this SO REAL, SO DEVASTATING ILLNESS.
You might think .” Oh but I saw you the other day, smiling, laughing, talking cheerfully away….” – Yes!!! You got to see me on a day where I fought a battle! A good day, a day I needed to do something for my children or to keep my social sanity. You don’t get to see the bad or the worst, because I won’t be out. I’ll be home in our bed, or on our couch recovering – or trying to recover, before another battle is fought for my children, for my way of life.
Its only the handful few AMAZING friends that get it and still keeps coming back – understanding that I am not turning THEM down. It kills me that I’m not able to return invites either. That just the few hours of a small dinner party or visit is like climbing a mountain without the adrenaline rush of accomplishment and getting to put down ones flag at the peak, or like giving birth without the wonderful bundle of love handed to ones chest at the finish line) Its such a huge task for me to overcome that It very rarely happens anymore.
The thing is, I have my kids. Small beautiful kids. They need their mama. They need their mama always. I have to prioritize them before ANYTHING else in my life and to be honest, it does not leave much of me for others. Cus at the end of the day, I still need to be their mama after the guests has gone – I cant just lay down and sleep for a week like I feel like I need to. Then we are back round, full circle to the constant feeling of shame and being inadequate. I did not choose this – I did not choose to not live a full life – I did not choose to have M.E! I’d trade this for a full time job in a heartbeat! If you believe otherwise, I’d be happy to lend you my shoes for a day – I bet my life on you changing your mind. Other then that I would not wish this on any soul…
If you want to try to understand me and M.E, please watch the video below for a good intro. I will put links under if you want even more facts – both in English and Norwegian – Thank you for caring!
Video by sleepydust.net