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.
Sunday, 27 May 2007
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4 comments:
It just takes time and he'll gradually come round as he begins to hear what his body is telling him and, sometimes, be able to heed the cry. Sometimes he'll ignore it because we're none of us Saints (bar Gillian Bloody McKeith ---but look what its done for her !. Glad you're having a calmer time
I can't help thinking it's a real shame he didn't stick with the exclusion diet, never mind about the supplements and chlorella. The thing is that his violent reaction to the reintroduction of things like dairy and wheat (assuming he'd cut those out) pointed to the fact that he was on the right path. The way to go then is to keep on the exclusions, reintroducing things gradually, one by one, he wouldn't have had to give up his tea forever. The underlying condition then gets far more of a chance to sort itself out. Intolerances are just part of the picture, I know. When I tried the kind of regime you found for your husband I didn't have such a reaction to reintroducing things - if I had I'd have been almost glad because it would have given me such a clear idea of something I could actually do that would make a difference.
But I can see that it becomes impossible unless he himself wants to engage with the process, otherwise you put yourself in the role of being his mum or nanny and tantrums are bound to follow. It sounds as though he is beginning to find some of the answers for himself, and in the end we who have the illness all have to do that. Good to hear things are better between you.
it may sound awful but i understand both views here *wry grin* ... it must feel so powerless to be tyrannised by ME ... both of you .. but if someone told me i should give up this or that, relatively healthy as i am, i'd resist. On the other hand how flipping courageous of you to launch into what isn't an easy weekly shop ... to get what we should probably all be eating anyway ... it isn't easy because you will no doubt have gone to extraordinary lengths to make it "right" and delicious too! as always i am in awe of you.
i hate herbal teas and such too but i do adore jasmine tea! weird, eh?
it does seem as if your husband was more willing to try healthier/cleaner stuff when he felt in control of that choice - there must be so few choices available to each of you at any time ...
you dear lady are Magnificent!!
Thank you all for your comments. I'm sorry I haven't been around much to say so (I've been finding it difficult to get any desk time), but your support and advice means a great deal to me.
I can understand about not wanting to do what you're told... but when we were first together *I* was the one with the chronic health problem (I still have it, but under control) and he was the one who bullied me into eating and drinking the right foods to avoid aggravating it. I followed his instructions like a lamb...
I do understand his rebelliousness, but I wish he would properly avoid the things that make him iller, as it has such major repercussions for the whole family.
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