Despair – I’m under house arrest

Despair – ‘the feeling that there is no hope and that you can do nothing to improve a difficult or worrying situation’

So I’m going through a particularly hard time at the moment. I’m effectively under house arrest again – I want to live and be free.

I have been fighting off yet another attack of the dreaded ‘white lumps’ – these are extremely painful lumps with white heads that appear, generally in clumps around the body. The are painful to not even touch, even more painful when you lightly touch. They are also disfiguring as well, I’m embarrassed to go out and show my face. Getting to sleep is very painful when you have them in your hairline, neck, back and backside. It impossible to lay in bed and get a position that doesn’t put you in pain. I used to Box & Thai box so no stranger to pain, broken bits, cracked ribs, bruising etc – I don’t use the word ‘pain’ lightly.

I have what only can be described as 3rd degree burns over the entire back of my scalp, it’s sore, inflamed, it hurts to turn and the skin in peeling off.

I met with a friend, Andy for coffee, he’s generally got a background into my situation but when he saw me he looked distressed. ‘I don’t know what to say – you need to see a doctor’. I looked at him and said ‘I’ve seen several, they just shrug their shoulders and tell me they don’t know what it is – then pass me onto a different dept, some of them are positively irritated with me going back and asking questions’…. and this is Private. I’ve been referred back to some dept in the NHS, which I know will come back with something along the lines of ‘we don’t know what it is’

…and there is the problem. I’m good at dealing with issues – but when you don’t understand what the issue is and you are guessing at answers that just aren’t working you cannot exert any control over a positive outcome.

The medical profession has completely failed – they seem to be very good at telling me ‘what it isn’t’ but ‘not what it is’. I was recently effectively forced to go for a CT scan with injection – to check for cancer, even though I know it isn’t that – because if I didn’t, it would then be used as a perfect excuse to not progress my case and neatly pack it away. The logic seems to be along the lines of ‘If you float you are a witch and we’ll burn you, if you sink you’re not and you’ll drown’, well maybe not quite that extreme.

Anyway, back to Andy – he seemed very distressed and wanted to help, I guess it is very distressing when you see someone that needs help but are unable to give. I changed the subject quickly and moved it onto something else, pointless for him to be worried as well. Its hard to do that smoothly when the physical signs are so manifest to the person you are speaking.

I’m worried mainly because I can’t see a way out of this, there is no clear path, identification of underlying causation and no path to health. Its affected me in every way possible and I want to be happy when I see my children, instead I’m highly strung and trying to hide what’s happening.

Maybe I’ll try a doctor again ……

Pictures: Some of the many painful white volcano’s appearing all around the body and some of the flecks of skin peeling off the rear of my head.