Oh gosh… did I really not write since MAY? Sorry. And… ehm… not sorry.

Summer holidays started. We went to Krakow Rheumatology hospital (again). Got a few things (temporarily?) dismissed and a new diagnosis. Then we went to Crete and spent a blissful 12 days doing pretty much nothing other then chill, sunbathe and swim. Now we are back and yeah….. we go to Rabka and the lung hospital in a few days.

I try not to think about these visits to much because Im not really ready for this to be our life, although obviously it already is….

I think I have been burning the candle not just from both ends, but every angle imaginable for so long, so long now that I cant really remember a time where that candle burning thing wasn’t consuming me, for so long now that its normal and I don’t really know what it feels like to not have it (the candle burning) anymore. I mean, its a flippin inferno going on with this candle!

Then… 2 seconds after typing that I feel immense guilt, because we are the lucky ones, we are the ones, that even though we have all this crap, we have each other, we have a roof over our heads, we have a kid who battles on with stuff that is liveable, we have life, and 4, 5, 6 hospital stays a year….. there are others who have it way worse. I don’t get to have a pity party or feel sorry for myself, for us. Because we are ok.

But yeah, I didnt write since May. Because I couldnt, and I cant right now either I think, but at the same time I have to. My head right now is buried in the sand. Im playing ipad games that take my concentration so I cant think, Im watching crap on tv, Im doing everything I can not to think, because Im not ready to be alone with my own thoughts.

I am pretending everything is ok, because it is. And yet it is not.

There is no Lupus (right now). There is no Rheumathoid Arthritis (right now). There is the high ANA still, there is the lump on her finger (probably benign) there is the millions of rashes and weird things going on (MCAD?), there is the EDS, the new thing which I suspected since her Celiac diagnosis – low bone density (Osteopenia).

Still, the above is all good, its good news, it could be worse right? So why cant I think about it? Why am I paralysed on my sofa some days almost unable to move? Why have we yet again had to go buy more underwear and t shirts because I cant pull it together enough to do laundry most weeks.

The puzzle pieces are coming together and we have more and more answers, I should be happy, I should get on with whatever needs doing and face facts, none of it is new, we lived with it for years already. But I just cant allow myself to think…. let alone write.

I want to go back on holiday and stay forever and bury my head in the sand and not have to worry that soon she wont fit in the push chair. I want to keep my head in the sand and not listen to the niggling voice thats in my head asking why she’s not gaining weight again, I want to keep my head in the sand and keep it there forever and ever and just sunbathe and lie around on the beach and play UNO and not have to set the alarm clock.

I dont want to have to deal with trying her back in school again in September and living with the let down that comes when she has to be taken out again. I am hopeful….. I was hopeful, until 2 weeks before the summer holidays started she had another pneumonia. I want to be hopeful… but I have to be realistic. The realist in me is hopeful and happy and an optimist, but the realist in me knows, and the realist in me also knows that its going to hurt oh so bad if it doesn’t work. I feel like I am a hundred years old.

So I smile, I laugh, I carry on, I make no plans whatsoever and carry on and try not to think about the hospital stay thats happening in a few days. Maybe after we will go buy more new underwear.

Leaving you all with some happy holiday snaps incase I depressed you to much.