Friday 3 November 2017

Frustrations.

I want to tell you is that Isaac is well, back at school, and loving life; I'd love to tell you that Rosa is settled and behaving again, and her rage and tantrums are a thing of the past; That Anouk is getting all the love and attention she deserves; That I am sleeping well and when I fart, rose petals fall to the ground behind me....

But it's just not true. Recovery is slow; Isaac is vomiting daily, and missing more school. This could be a) cough-til-your sick vomiting, b) CF digestive problem related vomiting, c) side effects from the steroids/anti fungal drugs which he is still on or d) a bit of everything, with a little post-hospital anxiety thrown in for good measure - we just don't know. Plus, we think he has been teased at school about his moon face (known side effect of steroids) which makes me feel mildly, well, murderous. 

Rosa swings from loving me so hard, to hitting me in rage. I am trying to get back into work, which is a welcome distraction to everything (I love my job and colleagues) but my heads not quite there - I want to be there, but my *anxiety still come in waves. Still trying to figure out how the time I have taken off work will affect us (unpaid?) and at the same time planning how we will manage this better in future, as we are facing more regular, planned hospital stays. 

My anxiety stems from seeing Isaac become so sick, so quickly; a glimpse of a future that we hope never happens. 

We are waiting for a date for the CT, while results from the bronchoscopy come in slowly - and will do for some weeks yet. We also have to prepare ourselves for surgery in a couple of weeks; shit, that had better go well.


* Anxiety is an emotion characterized by an unpleasant state of inner turmoil, often accompanied by nervous behavior, such as pacing back and forth, somatic complaints, and rumination.[1] It is the subjectively unpleasant feelings of dread over anticipated events, such as the feeling of imminent death.[2] Anxiety is not the same as fear, which is a response to a real or perceived immediate threat,[3] whereas anxiety is the expectation of future threat.[3] Anxiety is a feeling of uneasiness and worry.[4] It is often accompanied by muscular tension,[3] restlessness, fatigue and problems in concentration. <Wikipedia)