So How Am I?

These are extraordinarily difficult posts to write.

If you were to look at the very first few posts on this site, and their comment threads, you would see how uncomfortable I was with discussing my health from the very start.

I have spent my life pretending I'm OK whenever I can. Most of my family and friends say that they were staggered when I started writing here, privately, in front of the whole world. They had absolutely no idea how I really am because if I let them know, I have to admit it to myself.

I hate sympathy. I mean phobically, rabidly detest it. Sympathy is the big neon light that confirms my secret is out. There is no sympathy without pity and I cannot bear the moments where I see that my life can be pitiful.

But I made a choice to shine a light on this other world. To draw back the veil on a life like so many millions of others, lived beyond the comprehension of most. Because without comprehension there is only the  ignorance of being judged. If I don't edge into reality now and then, lay myself totally bare, face the day as it is, just for once, then none of what I write has any meaning. It has no context.

I've been very unwell since my last operation. I didn't recover as I normally would.

I started to get hot-poker stabs of pure pain at the site of my surgery, so breathtaking, I would shout out involuntarily. I am no surgery virgin. As the days and weeks went by I failed to put on weight as I normally would. I was weaker than I should be and I had all the symptoms of obstruction I was supposed to be free from.

After the horror of my recent stay, I found myself with no medical or surgical support at all. No gastro, no bowel nurse on the end of the phone, no dieticians, no surgeon, no cardiac consultant, no more lovely rheumatology specialist, no respiratory doc, no neurologist. I had to start over to get the treatment I so urgently needed.

Chronic care is not acute care. The endless, bureaucratic hell of trying to negotiate urgent treatment is a farcical, kafka-eque, nightmare of unbelievable delays and disappointments. You just won't know unless you've done it, so you will simply have to trust me when I say that you just have to play the game. You wait the waits, you succumb meekly to all of the same predictable delays and conventions. You live a limbo-life of survival.

I'm malnourished. I daren't eat more than once a day. If I eat at lunchtime, I will writhe all afternoon but might enjoy a few hours with my family in the evening. If I need to do anything at all during the day, I dare not eat til the evening and so pay the price through long, sleepless nights.

I try not to faint at the school gate. I wonder why I'm crying because I can't find a bill or satchel and realise I'm shaking with hunger.

I allow myself two days of opiate-cloud escape at the weekend, when I can hide away in bed and Dave can compensate the boys with ice-creams and parks and bedtime stories.

But I itch and I sweat and my nerves jangle and jump. By Monday morning I never want to see a painkiller again. Then, by Friday, I crawl into the surgery again, convinced that it is, after all, a price worth paying for some peace from pain, however fleeting.

We dare not plan, Dave and I. Yet we do plan. Because life must somehow go on. We fill our diaries cautiously with normal lives until the normal life becomes chaotic and frightening and uncertain all over again.

I have never needed surgery immediately after surgery before. There has always been some respite, a brief few months after the horror of an operation, that mean I always remember there will be better times ahead. You need some fight to go into surgery. Some strength and reserves and acceptance. I have none of that this time. I am still a painfully thin, weak, little bag of bones.

I am lethargic. I don't want to write or check my emails. I don't want to climb into a frock and a painted on smile and fight for justice. I don't want to pay bills or make phone calls. Even my old friend adrenaline is becoming more and more reluctant to drag me through.

So I hide away in the twilight of this limbo-life. Please, don't make me look, and later, we can pretend that this was all just a bad, bad, dream.