I haven't been on health unlocked for ages because I seem to always see miserable posts!
Yes, I know it's great to unload your miseries when you're feeling down but have you all thought about the newly diagnosed who might be reading all this and thinking, my God. I might as well give up now.
Personally I'm thankful I only have Pv.
I go to the biggest cancer hospital in the north of England every 5 weeks. I see people in their 20's and 30's who've lost heir hair, who have blackened and bruised hands and arms, in wheelchairs, and just looking simply ghastly.
You know, I'm a great believer in the power of the mind. If you think positively, and count your blessings, and look at the good things that you DO have in your life, that can really help.
I have a completely separate condition - NOT connected to PV- called histamine intolerance, and interstitial cystitis, which makes me go to the loo about four times a night. If I deviate from my hugely restricted diet I have massive sleep problems, nausea, headaches, soreness under my skin, irritability, depression, itching ( not PV itching) and a plethora of other unmentionable problems.
I can only eat chicken, lamb, vegetables, rice and fruit.
I can only drink rooibos tea, water and elderflower cordial.
Quite frankly it's a pain in the butt. We can only self cater if we go away - even overseas.
I have to take my own food everywhere if we go out for dinner or lunch.
Do I let it get me down? No.
I look at all the poor buggers round the world with no home, no food, dying children and I think , crikey, how lucky am I?
So come on, buck up and look on the bright side.
Lots of love. Louise.