ME 2

September 12th, 2017

Fatigue is a word that in no way describes the realities of ME. I’ve come to the long conclusion that the best way to convey how it feels is that it’s like flu. You just want to lie in bed and be left alone – no thinking, no talking, just rest. Then, over a few days, you feel a bit better. You might make a phone call, catch up on your emails for half an hour. Then the big day comes when you actually feel almost ok to go out, go to a doctor’s appointment, or the shop, or even – boldly – meet a friend for coffee. Nothing wildly exciting.
But then, the next day, even that mild exertion has left you back at square one. Just want to lie in bed, leave me alone, can’t cope with the world.
Flu isn’t that bad. But imagine if it went on for ever. And throughout it all, you still have to get your rent paid, your fridge filled, your laptop replaced, your car MOTed. See?


September 12th, 2017

3 months after referral to my local ME/CFS clinic, I finally got an invite to their intro session. Much better than I’d feared, only a passing allegiance to the dubious NICE guidelines, based much more on the 2 OT’s own 10 years of experience with what actually works. Wonderful. They acknowledge it as an illness of unknown but undoubtedly physiological origin (you can’t take this for granted, even these days). They see themselves as not offering a cure, but illness-management strategies that may help you recover a bit faster. This is all done in groups: they only see patients individually if there is very good reason (OK, austerity, we get that.) If they think that people may have mood disorders that are getting in the way of them managing their illness as well as they could, there’s a separate group for that (group CBT, I wonder how that works?).
Then the killer punches. To be allocated to a group you have an individual (triage) session first with one of the OTs. The current waiting list for this is 18 months. Yes, 18 months. And you don’t even get to see a doctor for a formal diagnosis – if you think you have compelling reasons for a medical appointment (and not even with a consultant, just a specialist GP attached to the team), you have to phone the admin worker (who never answers her phone anyway) to book a 10 min phone call with an OT where you can plead you case. This is so appalling. You could see that when she said all this, which she’d carefully saved til last, she was embarrassed to have to tell us the length of the wait. She even encouraged us all to write to the NHS trust to complain. But the feeling in the room? Not a ripple of outrage. Just a sense of everyone sighing gently and subsiding a little further into their chairs. ME patients don’t complain. We’re too ill, too exhausted, too ground down with coping with a condition that devastates our lives but no-one else is even interested in. (I shall complain, of course, but that’s just my family heritage manifesting itself.)

Since I finished my cancer treatment, and therefore was strictly speaking off their books except for check ups, I have received so much ongoing support. Free reiki, free massage, free drop in centres with volunteers who offer you free coffee and cake and hold your hand while you cry, free benefits advice. There are even free holidays for post-cancer people, with mindfulness and relaxation and group support to help you with your “cancer journey”. Which has all been amazing and wonderful and I have felt so touched by the amount of support around. But you know what? I would have given all of this up – yes, all – in exchange for half a dozen OT sessions on ME management now when I most need it, not in a year and a half’s time.
Last week it was in the news that a minorly well known and successful government advisor had killed himself a few weeks after being diagnosed with ME. Yes, he had some anxiety and mood problems as well, probably related. But that’s what ME does to people. Why does the world not care? Because we’re too ill to complain?


September 12th, 2017

Yesterday (Monday) I ate my last fruit and veg til Friday. Also banned for now are nuts, whole grains, beans, seeds and anything else good for you, even herbs and spices. From now on it’s white bread, white rice, white meat, dairy, white grape juice, boiled sweets and fizzy pop! It’s extremely weird, to only be allowed food that’s unhealthy.
All this so my insides will be squeaky clean and ready for inspection on Friday afternoon. And it’d not a good idea to cheat with banned substances, as they are likely to be still embarrassingly present for viewing on the monitor – not to mention the more serious chance that they could obscure a polyp or worse from view, the detecting of which is the whole point of the exercise.
I also get to see, should I choose to watch, the join from last year’s surgery – from the inside. Not sure about that.
Am planning Friday night’s veg-binge already.

“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.


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.