Cups of Tea

Nothing for a month and then two in two days. But there are good things going on, and since the situation so often seems pretty hopeless, I thought I'd write something positive for a change.

Having been so absent from home the last few days with work, and knowing how much my husband was suffering as a result - but not having yet had the time to even have a decent discussion with him because we were both exhausted - I was sure I was going to have to deal with the fallout of my recent spree of overworking. I was thoroughly expecting to be punished for it, in that my husband would be feeling so awful, and so resentful of the fact that I had caused this, that he wouldn't be able to avoid at least snapping at me a little. He was so ill on Friday morning, when I was having to leave to catch an early train, that he couldn't actually get our daughter to nursery, even though not being able to complete that journey would mean he'd have her all day instead of having the morning to rest. I felt incredibly guilty and torn about leaving him that day, and completely deserving of whatever horrible treatment he would dish out to me on my return.

But everything is much better than expected. He doesn't seem to be blaming me at all, and is not only being positive and loving, but is taking some small but very significant steps towards helping himself feel better. I'll explain.

About eight months into his illness, when it began to dawn on us both what it was (and yes, it took that long to overcome our denial), I started doing the research, reading everything I could about it. Amongst other things I paid a tenner or so to download an e-book called something like "How I recovered from ME", figuring that it wouldn't be a waste of money if it even gave me one helpful thing I could use to help my husband get better. (And when I think about the thousands of pounds I've spent since in the hope of relief - thousands of pounds we essentially don't have, added to our debts - it was a good buy!) It was a very comprehensive guide to completely cleaning up your life - nothing unnatural, no additives, no chemical cleaning products, organic food only, anti-allergen dust covers on the pillows and mattress, no caffeine, no sugar, no alcohol, and shedloads of daily supplements - from specific vitamins and minerals to EFAs and chlorella. (The supplements were the first significant ME-related expense, many of them imported from America at considerable cost.) My husband agreed to try it for three months - basically, until Christmas - which he wanted to celebrate in the usual manner (normal food, alcohol).

We went at it full-tilt - including things like a parasite cleanse (though he point-blank refused the coffee enemas!). Or rather, I went it at full tilt, and he followed my instructions reluctantly. He hated the boring quality of healthy food, no matter how "interesting" I attempted to make it, and the huge number of pills (albeit supposedly "natural") that he was taking. The things he missed most were tea and coffee (four or five cups a day, always with two sugars).

When he came off the diet that Christmas the first thing he had, after taking the kids to the pantomime, was a slice of pizza and a glass of milk. He had an almost instantaneous allergic reaction - his face swelled up, and he had difficulty breathing. Not enough for us to go to hospital with, but enough to be quite shocking. What could be so harmful about a slice of pizza and a glass of milk, for goodness sake! We didn't realise how sensitised his "purified" body had become. That was followed in the next few days by allergic reactions to a) a single glass of Baileys and b) the needles of the Christmas tree. Although we talked about his going back on the diet after Christmas, he couldn't face it. He said he felt strongly that although it appeared to protect him from many of the symptoms of the illness (he felt a great deal better on the regime) it wasn't the path to health either, because the underlying illness was still there and supplements like chlorella only seemed to "mask" the actual state of it, meaning that he couldn't judge so easily (by the pains in his legs) when he was over-doing it. And in any case, he argued, if he couldn't have a cup of ordinary tea with two sugars, life frankly wasn't worth living anyway.

At times over the last couple of years, especially when he's was feeling worse than usual, I tried to gently suggest that he cut out the tea and coffee, but his reaction to this was usually irritation that I was trying to "meddle" in his health without any understanding of how it feels to be chronically ill, and that he was feeling rough enough without being made to feel guilty about having a cup of coffee, which he counted as a treat.

So I was surprised to find that one of the things that has happened during last week is that he has cut out ordinary tea and coffee completely, and taken up drinking jasmine tea without so much as putting a smidgen of milk or honey in it. My husband is not a herbal tea drinker by any stretch of the imagination, and though we have quite a few fruit teas, and redbush (for guests and for me), jasmine tea is a completely new addition to our cupboards. As if his choosing to switch to jasmine tea weren't enough of a surprise, he seems quite astonishingly good-humoured and well-disposed towards me, and yesterday we laughed a lot and had a good day together.

This has been such a rare thing over the last year or so that it is worth noting in itself, but the decision he has made, for himself, to switch away from caffeine and sugar - in this most gruelling of weeks, when he would usually be resorting increasingly to artificial props - seems to me the most significant indication that there is some genuine hope of things getting (at least a little bit) better. Certainly, despite being at a relatively low ebb, he seems more positive in himself that I have seen for a very long time.

Do Parents With ME Have Lower Recovery Rates?

Having not posted for nearly a month, you may be forgiven for thinking perhaps that everything was sorted out now. Of course, that isn't the case (though I really wish it was). But I took on a lot of work this month - and some other work that was supposed to be over has suddenly come back into play as well - and I've had so little time left over that what I have had has been necessarily given to husband and family. Not that they've had enough of me by any means. In fact another reason for staying away from here (even if I had felt, at any point, I could snatch half an hour to write something about the state of play) is that I have been avoiding thinking about the damage I am doing.

Is this wrong? There are times when I just have to close my eyes and knuckle down to work, even though I know my husband can't stand the current level of activity. I tell myself that it is only temporary; that it is necessary; that someone has to bring money in, and that someone has to be me. Because I'm freelance, work doesn't always come in manageable chunks - sometimes, the necessity to say "Yes" to almost everything (because there can be long periods of drought) leads to temporary overload.

So I've stayed away from here partly because I know he had been getting iller, and that my work (work I enjoy and want to do) has been the cause. There will be payback - both in terms of the longer time he will take, now, to recover, and because there is a good chance his increased level of illness and capacity - provoked by me going out there and having a life - will lead to problems between us. I don't want to be the cause of these problems. I long for what I still think of as a "normal" life where we both have stuff we do, and both is happy the other is doing stuff, and what I'm doing isn't the direct cause of his pain; a husband in good health, able to withstand the extra domestic duties that come from a brief spell of increased busyness on my part. I know this isn't what I have, so when I occasionally plough ahead regardless in a slightly bloody-minded way, I try to suppress my guilt.

Brian, interestingly, has not come back. I guess this is the point where I should stop being surprised about that and recognise that my husband has entered a new phase - he has gone from anger (about not getting better) to resignation (that he's not going to). Acceptance of the illness is a necessary stage, I gather, in getting better - but this seems much more like resignation than acceptance, and I'm not sure it's going to help him any more than the anger did. It's a great deal easier for me, in some ways - I much prefer not being constantly shouted at and having my personality flaws constantly exposed to scrutiny - my inadequacy as a nurse, my inability to plan properly etc. But he is completely without hope - he now says "I'm not going to get better". And the mind being a powerful thing, I can't help thinking he's making it true by saying it.

He's not open to any discussion about his approach to ME (believe me, I've tried), so I feel there's nothing I can do about this but be there for him and wait until he works through this phase and gets to the next. Trying to persuade him that he might get better only provokes anger (tickling the outer edges of the sleeping Brian). He's recognised that family life doesn't allow him the rest he needs to recover and that until at least some of the kids have grown up and left home (and the youngest become older and more independent) he won't get it. But we're talking easily ten years here.

I wonder - and I'm assuming the answer's no because of the appalling lack of research into ME generally - whether there is a significantly lower rate of recovery from ME amongst people with families. I read somewhere that the chances of making a "full" recovery decrease signficantly after the first two years. We're already a long way outside that timeframe (18 months outside), so it may be true that statistically, his chances of recovery to anything like normal health are slim. If having children around you keeps you ill because you cannot rest, does that mean ME sufferers who are also active parents are amongst those not very likely to ever make a full recovery? It's a depressing thought, and not one I really want to leave with, but people are beginning to wake up, and after my recent bout of overwork, my husband needs me to be present.