Yesterday I felt good. It was a better day sprinkled with hope. Then I watched the Government Update on the Infected Blood Compensation Scheme on BBC Parliament last night. Then I read something on Facecrook about that Scheme.

I recently started morning pages, a writing process that involves writing immediately after you get up, you dump everything that is in your head on the page. They are not to be shared or even reread, just expunged and on with your day. I am choosing to share today’s writing because as they make their statements, so I have a right to make mine. This is my update on the Infected Blood Compensation Scheme.

Night not great because I saw something on FB last night about the Infected Blood compensation. Suggesting that the ‘experts’ have said that post 2016 those of us who’ve got HCV will have had successful treatment and therefore the calculation for financial loss – an amount per year that looks to be around a third of what I was earning – will be halved from then on. That year I think because that’s when the most effective treatments were available. No account has been taken in their calculations for the life fucking medication myself and others were put on before that. No account taken for the long term devastating side effects of those medications that meant so many of us had to give up careers and so much more. I am angry and sad about this but I haven’t even confirmed yet if it is true. I can’t look at it for fear I’ll feel even worse. The stupid thing is I don’t care about the money, although that is an actual loss that must be recompensed and its essential for my future; it’s about properly having our pain recognised, properly understood. This, if it is as I’m hearing, is not that. This is an insult, an offence, a punch in the chest.

It puts me back in the place, post interferon, when I was really struggling to regain my health and was going over and over to my doctors and being dismissed, having my symptoms denied. I feel I am there again. Having my suffering shut down. Being made to doubt my own experience, forced to question – is it really that bad if the ‘experts’ say I should be ok?

The horror of this is that since then so many us told our truth to the inquiry. That truth was magnified by its similarity. We, in chorus, exposed our pain, our desperation – the sound of it harmonised and swelled as more of us added our voice to become a wall of sound. Why now is that being drowned out by medics telling us how it is, how it must be, how we do not know ourselves?

ENOUGH!

I feel I must now look at these documents ‘explaining’ the IB compensation scheme, documents I am fairly sure will destroy me, as I see them doing to others around me, to see if what I suspect is true. Madness when I know they are a challenge to understand, possibly inaccurate or missing information. Must I damage myself further in order to try to understand what is proposed? To then what? Fight more, raise more issues with my MP, press our pain down their throats that they might understand? Did we not just do that with the 5 year public inquiry? Did we not just do that with the June consultation led by Sir Robert Francis? I am so confused, so hurt, so tired.

Watching the government congratulating themselves on what is happening, that’s the ritual: I thank my learned friend for blah blah, I know everyone across the house will join me in sending our sympathies to the family of blah blah blah. Words with no substance. Words that do not provide needed detail, that do not reassure and engender trust. Words that further confuse and diminish us all.

We are done. We are done. We are done.

I cannot fight this any more. I need help but instead I lay out my pain for those who are only now setting up a service to help us. I fluctuate every day from I’m ok, I can do this if I focus elsewhere, look forward, try to imagine a future beyond this – to I cannot take any more, hold my fracturing pieces together, feel like I’ve fallen through cracks of contempt. The worthlessness overwhelms me, the helplessness is complete, takes me under, drowns me over and over, I cannot reach for help.

I should be dead. I should be dead. I should be dead. I am in a sea surrounded by others. I am in a sea alone.

Why? Why is this ok? Those who make speeches reach out piecemeal to ‘work with the community’ and then do not listen. Follow their agendas while patting themselves on the back. They simply do not know what it is like living like this and yet they judge us. They appoint people furthest from our own truth to judge us. They feed favourable information into the press so wider society can judge us. And they expect us to be grateful. Why are we still making noise? Why are we not appeased? Why don’t we just shut up and go away? Cash in hand.

I ask myself the same questions. Why does it fester so? I doubt myself, my experience and my feelings again and again. BUT THEY ARE REAL, I shout into the void. But we know best, the void quietly replies.