I've been diagnosed PV for around 8 years now and had the emotional ups and downs you can expect with this, but no one can tell you everything. Last week I was with the Hemo clinic and have gone from one to two hydrox tablets on alternate days, the effect was awful, taking me back over the course of a week to the start of my treatment years ago, fatigue and low low moods. After dropping back to one a day I'm almost back to a "normal" position over the last 3 days, to some it may seems I'm on a very low dose of the meds here but the effect was almost instant. I plan now to start the double dose tomorrow, 1 in the morning 1 at night over three days instead of two.
Like everyone, I didn't ask for this crappy disease, we just have it and have to get on with things but if you don't have it, you would never understand the effect of the hospital visits that put a question mark over your mortality each time you go or when you have these type of set backs and the fear it brings on of "how long have I got then?". I recently lost my sister at 64 to COPD, her husband only just recovering from a bowel cancer op and now halfway through his chemo, he is 65 tomorrow, life can be a real barst****, but here we are. I suppose what I want to say is, I am grateful to my medical team for the treatment over the last 8 years but they never consider how the treatment we are given can affect us emotionally or why or the mental impact we face with this and the other related conditions, treatment is not just giving out pills and testing the results, think outside the "box" people before we end up in one!
We are people after all, not just machines that are not running very well and no two of us with these conditions are the same or react the same, to those doing well, blessings on you for your spirit, those that sometimes fall over the emotional and physical hurdles, find what need to get you through the low times and when you need help ask, finally last Monday a new young nurse after listening to my woes told me, "you can have counselling if you need it", that alone was a help, maybe now is the time? Chin up all!