Rachel Worrall

Posts Tagged ‘Acupuncture’

I know my house. I’m a bit of a finicky cleaner – although I’ve had to let the state of the floors slide since the dogs arrived (not muck – muck I still won’t tolerate, but sticks and leaves, unless they get out of hand, I pick up as I go along but otherwise ignore) but being a finicky cleaner means you tend to get to know one’s house, the nooks, the cracks, the hollows in the uneven floorboards where the water gathers when you’ve mopped the floor. My cleaning never went as far as as my parents’ next door neighbour who used to scrub her skirting boards daily with baking soda and a toothbrush, but during periods of stress, is has edged on it.

When I think of cleaning, I think in terms of rooms, and then subdivisions of rooms, and then the subdivisions of the subdivisions: the items themselves. Sometimes an item will be an entire subdivision unto itself. The bookcases, for example, or the dining room table. The ten (we need a total of 8ms of uninterrupted wall space in any house in order to carry them) book cases must be dusted, the pine tree trunk table (8.5ft x 2.5ft; 2.6m x 77cms) waxed.

I’ve always been a cleaner. Whenever people came round for dinner at home (my parents) the cleaning of various rooms about the house would be distributed between my sister and me, and my dad, when he wasn’t helping cook or fixing the car. I used to love that cleaning my room, my room especially. Even though it was the smallest in the house, I used to spend the most time on it. Polishing the window sill and the side tables and the desk and the book shelves that my dad handmade. The duvet had to be pulled straight and the pillows balanced. It used to drive my mum mad. She’d have wanted me to finish the bathroom and the utility room but no, there I was still hiding (truth be told) with the cleaning fluids in my bedroom.

Since I’ve had CFS Adam has largely taken over the cleaning. He also does the laundry. He was a saint anyway but with me being so ill for so long it’s been proven beyond doubt. Not only does he understand that being unable to contemplate small tasks such as struggling down to the basement or pulling around the hoover is not malingering; he also gets on with them, without being asked – without a word – whilst I lie in bed, trying to be calm, trying not to be frustrated, staring at the ceiling.

I sleep for at least twelve hours every night – never less, if I do I simply cannot get out of bed. When the Adderall & Provigil combination doesn’t work (which means I don’t function; this usually happens after a ‘big’ day the day before) I lie the full day through in a half doze. This happens at least one day a week, more if the others have seen me fairly active. Thus I don’t blog very often – if I blog, I’m not doing sleeping, not working on my novel.

At first, when I started with CFS, the way I could tell something was wrong was that I could not contemplate walking as far as WholeFoods (a ten minute walk). Adam started doing the shopping struggling back with it through all weathers where we used to together. Now we have the car, I drive him there. It’s not only the physical exhaustion that prevents me from shopping, but the mental one. For making choices is tiring, tiring in the sense that after going to the supermarket I have to sleep, if not then, then the following day. This is true of all of my activities – so I pick the ones I want to trade on. Adam can shop /cook/ clean/do laundry for me, so I let him – because then I don’t have to sleep these activities off.

Supermarkets and other public places, such as the T, and novels or longer non-fiction books, are fraught for other reasons. My aural and olfactory senses have become sharpened in some way, or else I process the information I get from them more acutely. The result is that I cannot contend with places that are overpowering in terms of the confusion of noise and smells they contain. This is why I wait in the car rather than go into supermarkets. I can use that time to rest, I put the chair back and doze. That way I get more awake time with, in particular, Adam. As it is it’s rare that I’m still awake when he comes in from work.

CFS has imposed involuntary rules upon me. I can’t go out in the evenings. If I do I will pay for it with the following day in bed. I can’t organise more than two activities a day, once a week. The other days I must limit to one activity a day. Another day I must doze and the remaining I must try to split between dozing and writing. If I’m lucky I’ll get in maybe one full day’s writing a week. I can do 45mins of yoga maybe once a fortnight. Even though I don’t drink, my blood pressure is as good as it was when I exercised five days a week, my diet is great, my labs are fine and I’ve never smoked, my PCP is in despair.

I have learned things, though, with my CFS. I have taught myself breathing techniques both to calm and to rouse. I often meditate. Unable to write (type) I write instead in my head as I half-sleep so when I turn up at the keyboard I’m ready to go. This has made me a better writer. I have learned to value every single hour of every single day; eeking out the ones that are available to me I try to use them more constructively than I did before. I think a great deal more about how I spend my time because there is so little of it to be spent.

Because I spend so much of my time in my mind, trying to be as still and trying to be as calm and trying to be as accepting as possible, my imagination seems to play more, or at least play more tricks on me. I started this piece talking about rooms and the fact I know my house. Yet sometimes it seems I do not, that I exist somewhere amongst the three main houses of my life, in this space. As I wake these days from a half-doze, or even from sleep itself, there are parts of this house that have become part of my parents’ house and my maternal grandparents’ house. The desk from my small room at home sits in the corner of our bedroom, where the closet is. The bathroom from my parents’ house is through that closet, in the far corner of our living room. The big spare room at my grandparents’ house is where I wake up. It is interesting to me that not one of the rooms I was in at boarding school, nor at college, are part of me at all. Only the rooms that I especially liked, or where I was most cared for are there in my mind’s eye.

The good news – the euphoric news – this week is that there may soon be a test for CFS. No treatment as yet, though it’s speculated retroviral drugs may be involved. But what worries me – what has always worried me – is what if I don’t have CFS? What if I have something else? Something unidentified? It’s partly for this reason, and for the fact I would simply find it too emotionally exhausting, – going all that way to be told I have it or that I don’t have it but that there is still no treatment – that I haven’t done what Adam has long wanted to do and go and see a CFS specialist in Florida.

I have tried acupuncture, and this did indeed get rid of the sore throats. But I stopped because I didn’t feel it was getting anywhere, also because the walk there (30mins) was killing me – I spent the entire day following recovering. Then, I started again, this time with a different acupuncturist. I started seeing him in March and he told me he would work on re-balancing my Chi and that I would be cured in eight weeks. I’ve been going once a week since and last week I finally plucked up the courage to ask him how I was doing. He said my pulse was a little stronger, but slowly, slowly. In the meantime, somewhat irrelevantly, he told me to sleep well, work hard, eat well and exercise daily. I am learning a Mandarin word a visit.

I can tell that I am getting stronger though. On a day I’m writing, I need less dozes between paragraphs. For example, in writing this, I have had to stop for two dozes of one hour each where before I would have had to spread out the writing over a few days doing little else in-between. I’m becoming more adventurous and active in taking up treatment suggestions made by friends. On September 14th I am going to see a bio-nutrition specialist in NYC, and on Sept 18th I will try Reiki, as recommended by my PCP, for the first time. I have also taken up Rolfing, something which has had the most positive effect so far on my energy levels. I can also tell you that eating a small amount dark of dark chocolate helps a tiny bit. Drinking caffeinated drinks however is deleterious – they either make me suicidal (coffee) or sick (tea).

I’m hoping, whether I have CFS or not to find help from these new sources, maybe learn something about myself I didn’t know, and as an added bonus, feel better. Life, as Tony Blair says, is a journey, though I’m hoping curing CFS will involve saving lives, not losing them.