The Joys of ME

May 12th, 2017

Happy ME Awareness Day. Don’t worry if you weren’t aware of this, no-one is. Not even those of us who actually have ME, on account of us having little awareness of anything, let alone what day it is.

So, a review of the joys of ME:

  • Never having to set an alarm clock
  • No Monday mornings. No  mornings at all, really
  • A Blue Badge so you can park on double yellow lines
  • Having no  expectations to disappoint
  • No-one having expectations of you, either
  • No  stresses about having to do things (except the occasional tricky benefits claims)
  • You can lie on your sofa all day and watch all of Eurovision (yes, including both semifinals) and the Chelsea Flower Show (all 12 hours) and it really, really doesn’t matter.
  • It doesn’t matter if you have no money, because you’ve no energy for going out spending it anyhow.
  • You get a tremendous number of books read – even though you won’t remember what you’ve read a week later.
  • You don’t – usually – die of it

Just a shame that you don’t get the same get-out-of-jail-free card as with cancer. But you can’t have everything.

Cancer v ME

April 30th, 2017

People with cancer: stay up all night online researching the minutiae of aetiology and treatment. Fight it. Battle it. Become a survivor. Juice inconceivable amounts of innocent vegetables. Create an exercise regime to combat the fatigue – and stick to it. Practice positivity otherwise we might die. Keep cancer diary that will later get written up into a book. Get loads of support from friends who are afraid we will die.

People with ME: lie on the sofa wishing it was bedtime already. Not worth researching online, since no-one knows what causes it, and there are no proven treatments. Do  not even think about fighting it, firstly because we’re too knackered, and secondly because success in managing ME comes only through patience, acceptance and pacing. Exercise turns out to  make it worse. Too tired to make phone calls, so friends maybe don’t get quite how awful things are, since it’s not something you can actually die from, however lacking in positivity. Far too exhausted to keep a diary, and could never make a memoir of it afterwards as everything was just one great miserable blur.

NB: These are not personality variables; I’m currently juggling both.

(Thanks to my sister Leslie for this line of thought).

 

Cancer semantics

April 21st, 2017

It used to be – before all this happened – that I felt a vague unease at terminology used by people with cancer. Cancer sufferer, cancer survivor, it all sounded a bit coy and queasy-making. Until it happened to me, and I discovered it’s not as straightforward as you’d think. Because despite cancer having majorly dominated my life for the past year and more, I can’t actually say it’s because I have cancer. I have ME, yes, I have arthritis, yes, but I don’t “have” cancer: as soon as they find you have it, they whip it out. So there were only six weeks in this whole process, between diagnosis and surgery, that I could actually say I “had” cancer.

It comes up more often than you’d think, the need to explain your health state, neutrally and succinctly, in passing conversations. Are you planning a holiday this year? Why do you need me to lift this down for you? I haven’t seen you around for ages. How’s work going? I started by saying I was recovering from abdominal surgery for a tumour, which worked well. Then I moved on to I’m on chemo. (Which is amazing, it’s like the best get out of jail free card ever. I’m having chemo exempts you from any possible expectations anyone could imagine.)

But now things have progressed past that. My life is still massively affected by it all, physically and mentally. I’m still under threat of it returning, and consequent ongoing investigations for the next five years. Sometimes  I need to explain why I’m like this right now, but there just aren’t good words. I’ve had cancer really doesn’t convey it: I’ve had pleurisy too, but that was 40 years ago and has absolutely no relevance to life today. I’m recovering from cancer sounds self-important. The best I can find is, I’ve been dealing with cancer. If someone says this to you and it sounds coy or avoidant, try to think of a better way to say it.

Legislation

April 7th, 2017

Here’s a piece I wrote recently for a Pagan blog:

I’ve been talking with people recently about UK disabilities legislation, which is not as well-known as it should be, so I thought I’d write it out for this blog. It seems to me important for those of us with disabilities to know that the law is, in theory at least, on our side.

Firstly there is the Human Rights Act 1998, under which disability is a “protected characteristic”, which means that discrimination on the grounds of disability is a breach of your human rights.

Secondly, and to flesh out the details, is the Disability Discrimination Act 1995, which was later incorporated into the Equalities Act 2010. This states that if a person with a substantial and enduring disability makes a reasonable request to a provider of goods or services to the public, the onus is then on the provider of services to justify why this request cannot be met. If the two do not agree, and the person with the disability chooses to sue, ultimately it would be for a court to decide whether the provider was reasonable or not in turning down the request.
This law applies to anyone running a Pagan moot, event  or ritual open to the public – although most Pagans don’t know this, and might be shocked to think it applies to them! Of course, a lot turns on what might be considered reasonable: if a group is in the habit of holding rituals in lonely and distant places, because that is part of how they work, then a request to hold it in the car park instead might not be deemed very reasonable. But if they were to choose a hard to reach venue, when there was an equally good one with disabled access nearby, you could expect them, in law, to choose the option that was most accessible if requested.

Of course, it’s unlikely that any of us would want to sue our local moot, and it wouldn’t do much to make us feel comfortable as part of them afterwards. But I do think it helps for us to know our rights, and to speak up for them. To have the confidence that we’re not just “being difficult”. This is part of our human rights in a civilised society.

I’ve never yet threatened to sue anyone, but my default expression is “I wouldn’t want to have to resort to legislation…”. Which is my polite way of reminding others that this law exists to be used, and we could appeal to it if we chose.

Check up

February 8th, 2017
Check up at the hospital yesterday. I said I’d put on a stone in weight since surgery. Good, she said, that’s what we like to hear. But.., I say. No, it’s good, she insists. It’s so weird not to be nagged for being overweight.
I’ve been joking about the need to know which department my paper file physically resides in. This time I got the honour of actually transporting it myself, with half an hour and a cup of coffee in between in which to read it (though you’re not meant to). Twice the correspondence says “this pleasant lady”, once it goes “this anxious lady”. I suspect these words mean different things to doctors, and “pleasant” is just code for “appears normal”. As for “anxious”, well if you knew you had a serious illness but hadn’t found out at that point which, wouldn’t you be anxious? Interestingly though, that was with the Gastroenterologist, the only doctor who I didn’t particularly like, because he didn’t appear to be listening. So “anxious” probably relates more to a real sense of communication difficulties.
I’d been told my file would pass back to him once Oncology had finished with it, but no, it’s now gone to Colo-rectal surgery sub-department of stoma care nurses (not that I have a stoma to care for, fortunately)  instead, for the next five years, all being well. (I know, I took it there). Each department is tremendously efficient within itself, but there’s such a lack of interaction between them. Which is maybe inevitable in such a massive institution, but that’s why I need to keep my own eye on where my file currently resides.

Bedtime routine

January 28th, 2017

How it used to go:

Calculate when it’s 10 hours since I took my morning dose and can therefore take the evening one and go  to bed.

Go  upstairs to fetch hottie. Put kettle on.

Go  back upstairs because I’ve forgotten to  check if more morning pills are needed.

Calculate how long it is since I had my dinner, because the pills don’t go well with an empty stomach.

Try to remember to eat the requisite snack before doing my teeth.

Bathroom stuff

Take handful of pills (2 small, 4 big) and bicarb as my stomach quite rightly doesn’t agree with me eating right before bedtime

Do hottie, pour out glass of smoothie to take morning pills with (see empty stomach)

Carry it all upstairs

Note how the day has been on my chart for monitoring such things

Go  to  bed.

 

How it goes now:

Do  hottie

Do bathroom stuff

Go  to bed

Lie there wondering what it is I’ve forgotten to do.

Finished!

January 27th, 2017
Finally, the pills are finished! Yesterday was a strange day, with odd inchoate flashes of fear about what the next stage will bring, as if life has suddenly become real again. But last night a lovely dream (my dreams have been so dreary for a long time now) and today I am filled with hope and excitement at the prospect of what recovery will bring. Like being able to go out sometimes. And eat yogurt and blue cheese and prawn cocktail whenever I want.
It seems likely to be a long haul, as the fatigue has really kicked in over the last couple of months: I’ve hardly even bothered to get out of bed. But however slow, at least I’m now looking at getting better not worse. And beautifully in time with the season, for once. The first snowdrops are up in my garden, and just waiting for a bit of sunshine to bring them into bloom. I feel much the same.

Abandonment

January 13th, 2017

Just as I’m trying to come to  term with the feelings of abandonment at the prospect of not having to present myself at the hospital every few weeks once the chemo is finished – I know, I know, it should feel a pleasure not a loss, but it doesn’t. They warn you about this in advance, like a type of Stockholm Syndrome – I’m invited to join a clinical trial into the potential protective effects of aspirin. This will require regular check-ups there for the next five years. Five years. Abandonment? Not yet, I’m pleased to say.
Also, of course, it’s nice to think I’m giving something back.

Complaining

January 13th, 2017

One of the most egregious mistakes in print (imho) is when writers, usually but not always in film reviews, confuse “psychotic” with “psychopathic”. I have pointed this out to the Grauniad, you will not be surprised to hear, on many occasions. And this time it worked! Within hours I had an email back from the readers’ editor dept not just agreeing with me but saying they will amend the online article, and consider how to add further clarification to their style guide, which all their reporters are expected to follow.
Result!
I may be spending most of my days in bed, but it’s giving me much more time to tell the world what I think needs improving.

Sleep

January 7th, 2017

It’s a funny thing how even people who can accept that you’re ill still believe it’s good for you to get up early.

My landlord is planning to replace all the doors and windows in my house (in winter?) and when I said I’d need good notice of when it would be, so that I could go and stay elsewhere for the duration because I’m ill and don’t wake up early enough to suit builders, he just laughed and said maybe I’d have to learn to. Even an oncology nurse, as she was giving me the drip that contributes to me currently sleeping 13 hours a night was unsympathetic with me complaining about being required to be there for 9am (and it’s an hour’s drive away) and said maybe I should go to bed earlier. I’m already in bed these days at 9pm, how much earlier could I go without missing my dinner altogether?

It’s like there’s supposed to be some peculiar virtue in early rising. Like early hours are for proper stuff like working and later hours are just for being lazy and selfish. Despite the fact that most days I don’t  even get out of bed, I should still be doing so earlier than later. This seems to me to derive from Christian traditions of mortifying the flesh, the welfare of your soul versus the welfare of your body. I’m glad that Pagan ethics suggest listening to your body, giving it the sleep it needs, and working with mundane realities not against them.