midnight terrors

I have got to start taking the Elmiron. Full name Pentosan Polysulphate.

Success rate: one in three. Risk of side effects: high. Risk of serious side effects, including liver damage, rectal bleeding and alopecia: considerable.

But did I mention that out of every ten women who have been brave enough to take this for their IC for six months, three or four have really improved and gone into remission. These are odds that I now have to take.

It's sitting there in my cupboard; eyeing me from its little white box, which cost BANES around £300 for a month's supply; looking so innocuous; daring me not to care that it could poison me rather than help me.

I fought so hard to get it, to get a chance at taking it; I made my doctor fight so hard... and now I have it, I am scared. No - not just scared. Absolutely terrified.

I am scared it will make me sick, nauseous, unable to eat, thus further reducing my immune system and causing rows with my family over my not eating and making me feel worse and worse... I am scared it will give me migraines, upset stomach, rash, insomnia (hey, that one I have now...) but these are not the main things.

I am scared it will slowly damage my liver, perhaps irreversibly; or cause rectal bleeding, how ironic that would be as it was rectal bleeding which started this whole cycle of illness 15 months ago.

But the terror, the real midnight terror, is I will lose my hair.

I've seen the pictures, photos of women whom Elmiron has helped and their IC is in remission or greatly improved, but they have ugly patches of alopecia around the hairline, or mixed in with normal hair, or their hair goes so thin it just all comes out one day. And I love my hair - I've always been terrified of losing either my hair or my breasts as they are so much my identity as a woman, but even knowing this I said fuck it, I don't mind, I would shave my head now if it would get rid of this thing which dominates and permeates every area of my life; the IC is so bad that I do not care. And now my aunt says fuck it, maybe it won't be so bad and you can get hair extensions or weaves; and the doctors say fuck it (well, they don't talk like that, but you know what I mean), deal with the hair loss when it happens, if it does... we have to try it, we've nothing much else left to try.

And yet I am paralysed with terror.

I put it off over the New Year because I had to take some antibiotics for a throat infection and I've been telling myself to wait til they are out of my system. But it has been a week now.

Tomorrow, I start the treatment.

Tonight, I can't sleep, I can't breathe properly, I can't stop crying. I am properly frightened. I have no hand to hold. I want the man I love; I want my brother; I want my cousin; I want my Granny; I want my real best friends.... none of these people are here. It's surprising how many people I long for are either abroad, or dead. Only my parents and my children are really with me through this (aside from a few loyal local friends) and I cannot let them see how terrified I am.

I can't let this beat me. So much in my life I thought was so much worse than this and yet when I look back it was nothing at all. It was always a man. A man not loving me. I thought that was the worst thing in the world. God how wrong I was! How stupid! Unrequited love/longing is a walk in the park compared with a chronic painful illness.

Realise this: you take your health for granted but it is the best thing you have. Better than your lovers or your children or your careers or your passions because without health, you cannot enjoy or live any of those things. They become burdens which root you to the world; albatrosses around your neck, because you no longer like your life. You can no longer run in the long grass (if you ever did run in the long grass, but you know what you mean; I think I used to, with my long hair blowing in the breeze... or perhaps I just wish that I did); you can no longer kick a football around with your little boy - that's the one I miss the most. The most pleasant thing you can do is lie on the sofa with a hot water bottle and try to give your children your attention, have a bath, or sleep. But sleep evades me, so scared am I.

So fuck it. Tomorrow I start the treatment. It's a giant canon; it's a nuclear bomb; it's my own personal Russian Roulette game, with a gun half empty, or half full, of bullets.

Cure me; destroy me. You decide, Pentosan Polysulphate. Because right now you're all I have left. And it's not just my life here; it's my children's lives too.