“You’re still the same you”

July 18th, 2017

Conversation on a Facebook page about loneliness, and how people with chronic illness / disability / impairment are more prone. I say, I worry that I’ve been ill so long now, I’m drifting off into a different world where it’s harder for my friends to relate to me. Falling out of the loop. Someone else says, but you’re still the same you.
Am I? What makes us who we are? We don’t any longer believe in a true self, but one that is constructed, and therefore changes over time and with experiences. The “me” that used to rant on about social work issues is not the same as the “me” that now rants on about disability ones. Why would I expect my friends to be interested in either, to follow me down my own changing patterns? Hopefully, because I can find something interesting to say, about either. And about what they’re interested in too. But I start to feel more belongingness in the disability world than in the healthy ones. And envy of what friends can do that I can’t. Sometimes I’d rather not see your holiday pics on Fb.
These aren’t things I like in myself, but they’re things I observe.

Lanyards

July 16th, 2017

I have lanyard envy. Now and again I see someone bustling around looking busy with their name badge dangling around their neck and I think “I’ve got one of those at home. Oh, I wish I could wear it again”. This is seriously sad.

Such are the results of illness.

So, what’s a Reclaiming witchcamp like then?

July 5th, 2017

Well, you don’t need to be a witch to come, though you may be by the time you leave. And it’s not all camping, there are dorm and other indoor spaces too if you’d prefer. But what it really isn’t, (if that’s what you’re imagining), is hanging out in a field doing not much.
Witchcamps in the Reclaiming tradition are fabulous, intensive, focussed experiences, planned and guided by an experienced teaching team. After breakfast, the day starts with a choice of two paths, each a three hour mixture of ritual, trance, exercises, creativity, time in nature, sharing, having fun, and whatever else your teachers will have dreamed up for you. One path is designed to work for both children and adults, and for both less and more experienced participants. The other tends to require a reasonable familiarity with circle-casting and other such ritual practice, to save time having to be spent covering this ground, and therefore tends to suit those with more established spiritual practice who are ready to go deeper into magical and inner work.
Afternoons are less structured, but include one hour a day of affinity groups, where you meet in the same small group every day, to process what’s been going on for you, support each other and share ideas. Otherwise the afternoons are free, but get quickly filled up with optional offerings from other participants (previous topics have included tarot, yoga, astrology, the history of Reclaiming, Buffy, Elvis is God and other such delights). Then, time to explore the beautiful surroundings, a silent hour for personal practice and maybe homework from the morning’s path, preparations for the evening ritual, and just hanging out over cups of tea.
Dinner is early, to leave time for a very full on ritual each evening. Witchcampers are encouraged to participate in the creating of sacred space, casting and invoking, either by themselves or in affinity groups. Each camp’s rituals follows its own story arc, taking a tale from myth or legend and using ritual drama, perhaps some aspecting, trance, drumming and chanting to incorporate the lessons of myth and magic into our own lives. Again, the rituals are created so that children as well as adults can engage at whatever level works for them. And after ritual: pudding. A necessary grounding and replenishment after the evening’s work.
And more? A raffle and auction of wonderful witchy things. Maybe a Bardic circle/talent night. Great food, most special diets catered for. Endless tea and coffee. A small amount of chores like washing up, allocated via affinity groups (also grounding). Nice spaces to hang out, chat, network, catch up with old friends and make new ones. Lovely helpful teachers so you can ask all those questions that you’ve always wondered about but never found the right person to ask. Experienced organisers to keep an eye on everything, and deal with any problems (well, as best as we can).
Sounds good to you? Come and join us.

If you see me on the street, beware

July 3rd, 2017

I’m a nice person. I do my best to be kind, helpful, sympathetic. But if you see me on the street these days you might not believe this.
Walking isn’t easy for me right now. ME, arthritis, general debility, all make my weekly trip around town painful and difficult. By the time I’ve limped around the GP surgery, the library, the newsagent, and reached the market, all I’m thinking is “I need to lie down, I need to lie down. Now”. My head is down, my legs are hurting, all I’m focused on is getting it all done and getting back to my car as fast as possible. The market is wonderful here, all the shops are wonderful here, but there is no time for browsing, no time for window-gazing, just “I need to lie down. Now”. No time to stop and chat.
When someone bumps into me and apologises, I haven’t even the spare energy to make eye contact and smile. When clumps of tourists stop dead in the street right in front of me, as they are wont to do, I could very easily hit them, just to get them out of the way. When people crowd me in shops, I come close to screaming at them. My patience with stupidity is zero. I worry about bringing my walking stick with me, because of the temptation to take a swipe with it at anyone blocking my path. It would have happened before I could stop myself.
This isn’t the “real” me. This is what disability looks like. If you think I’m just being rude, it’s because you don’t know that.

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, for special conditions or treatment that they need because of their disability, then 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.