Timing

I often feel quite frustrated about the poor synchronicity between my physical capacity to do things, my opportunities to leave the house, and the weather. For instance, when it's sunny and I feel good and I want to go out and get stuff done, but I'm stuck indoors. Or when my work desk is clear, the weather is okay, and Steve/my PA/someone else is loading my chair into the car for a gleefully-anticipated trip somewhere, but I feel awful and wish I could go back to bed.

So it's with a sort of wry satisfaction that I am sitting here, admittedly in quite a lot of pain while feeling really quite unpleasant with medication side effects, but listening to the rain thrash down outside, snuggled up in a fluffy jumper and the safe and certain knowledge that the nearest I need to get to going Out There today was this morning when I brought the milk in.

There's not even much I need to do In Here.

I'm dopey and tired and I can't sleep for pain, but at least for once my brain's not filling itself up with all the things I should or would rather be doing.

'Cept maybe make another cup of tea.

Wedding: the Aftermath

There are certain patterns with ME/CFS, and one of the major ones has to do with the relationship between activity and fatigue. I follow the classic pattern:

• I do something active.


• I feel tired, often rather more tired than the activity warrants.


• I have a rest.


• I feel, not 100% better, but significantly improved.


• I carry on with my life.


• ... and then somewhere between 24 and 48 hours after the activity, a massive dose of absolute exhaustion coshes me over the head, all plans must be cancelled and I spend a lot of time in bed trying to recover.

The wedding was obviously an enormous active event. I had planned out a 72-hour food and medication schedule to give myself the best chance and this went amazingly well, but the fact remains that by Sunday morning, despite a full night's sleep, I had a major spoon deficit and the knowledge that it was about to get a lot worse.

First Breakfast was a slice of wedding cake (we'd asked for a couple of slices to be put in our room just in case we didn't get to eat much cake during the reception) and that gave me the kick start I needed to go and have a more traditional Second Breakfast of tea and toast with a few of the guests who had stayed at the hotel. The hotel staff helped us divvy up the leftover cake.

We'd hired an MPV to enable us to move lots of stuff around, but even so, Steve ended up having to go home on his own with the car full of gifts and our own equipment (like the TV and the Wii), empty it all out, and then come back to collect me, my chair, the dress, the suitcase and all the other bits and bobs remaining. By this point I was starting to struggle, but I was able to walk from the car to the house.

My husband (!) and I sat down to open our cards and gifts. We were completely overwhelmed - there were cards on every flat surface and still there were some we didn't have room for, all with the most lovely messages. We just about had the sense to log all the gifts against our guestlist so that we would have an easier time writing the thank-you notes.

That's about all I can really remember as at that point the extreme exhaustion kicked in. I know I did things, like visiting a friend who couldn't make it and eating obscene quantities of cake, but only on an academic level, I don't have any personal recollection of it. Apparently right up to Thursday I was telling people what a marvellous day I'd had "yesterday" at the wedding, and although I wrote a few posts online, they were all absolute surprises to me when I re-read them a few days later! Thankfully Steve had the full week off work, so we could really do everything at our own pace.

One month on and things that are done include:

• We've recovered back to "normal for us" levels of physical and mental energy, house-tidiness, eating and sleeping patterns, etc.


• We've installed our new Stuff in the appropriate places (mostly the kitchen), and taken the old Stuff and all the packaging to the recycling centre.


• I've mostly finished changing my name, although I still keep getting surprised by the odd little things that keep popping up with my old name and I still hesitate every time I introduce myself.


• We've paid off all of the bills, and given back everything that was hired or borrowed like the car and the cake stand, so there's a nice line drawn under it all - we don't owe anyone anything.


• We've had some of the photos back and have been able to print ourselves some copies to show people.


• We've given or posted all of the thank you notes.

We still need to take decent close-up photos of "stuff" like the dress, the flowers, the jewellery and so on... Steve's been promising to do this for a while so I think I'll just wait for the next dry sunny day and take some snaps of them in the garden with my point-and-shoot - everything looks good on a sunny, grassy background, right? We need to get digital copies of wedding photos from a few more guests, and then we can start putting together an album.

I also need to do another blogpost or two about some of our vendors who really were exceptionally good.

Keeping warm

So, I'm at home all day now, more or less every day. The thing I currently miss most about work is that it was warm. The weather has turned quite chilly - as one might reasonably expect, what with it being nearly December - and so it's a good time for those of us who maybe can't quite move around enough to keep ourselves warm to remind ourselves of the current advice in the form of the Keep Warm Keep Well campaign.

Okay, so as usual there's ample opportunity to snigger at the naivety of those who wrote it, for example the way they think that despite the level of poverty with which many elderly and disabled people live, we'll all have central heating with a thermostat that works. It's also very easy to get angry about the failings of the Warm Front grants.

Nevertheless there's a lot of good tips and advice in there but some of it does seem a bit... mutually exclusive. For instance:

"Fit draught-proofing to seal any gaps around windows and doors."
"Remember to close curtains and shut doors to keep heat in the rooms you use most."
does seem to clash a bit with:
"If you use a fire or heater in your bedroom at night, always keep a window and door open."
"Keep your home well ventilated."

Am I meant to be sealing myself in, or trying to get a breeze coming through? I'm just not sure any more.

On balance I've opted for sealing myself in - it's warmer that way, and there are worse ways to go than carbon monoxide poisoning*, where from what I understand you feel drunk and then you fall asleep, which is a reasonable summary of my day to day life anyway.

It's a good tip about keeping the blinds or curtains closed, and it makes a noticeable difference. However when you're stuck alone in the house all day, even if you don't have depression or SAD, it's all too easy for your mood to plummet, so I'm making a point of spending at least a couple of hours sitting by the window with the blinds open trying to enjoy what natural light there is.

It's also a good tip about having plenty of hot drinks, although again, not without drawbacks. I know I'm not the only disabled person who, when having a painful day, doesn't drink as much as she should, in order to minimise the number of excruciating climbs up and down Mount Staircase just to pay a visit.

So I've formulated my own advice. Ready?

If you can, spend as much time as possible out of the house and in a place where someone else pays the heating bill.

This slightly contradicts the official advice about not going out unless absolutely necessary, depending on whether you read it as "don't leave the house" or merely "don't spend time hanging around outdoors". And of course for many of us it's impossible - or at the very least, the cost of taxis would outweigh the cost of properly heating our homes. But if it's in any way an option, my inexpert advice would be to do it. Spend an afternoon in the library, sitting by a window on the sunnier side of the building. Go to a shopping mall and sit under the skylight watching the world go by. If possible, find some volunteer work, then there's free tea and coffee too. Join in with a free course at the Community Centre even if it's a topic that doesn't raise your interest. See people, get sunlight, get your money's worth from your council tax, because there are few more frustrating ways of spending a day than cooped up indoors with the curtains closed, shivering.

* I am a very fortunate disabled person who lives in a centrally heated house with reasonably-sized rooms. I am not sealing myself into a tiny bedsit flat with a gas fire, so please do not worry - or at least, not about me...

On being a bear with a sore head

"And the angel clothéd all in white opened the Iron Book, and a fifth rider appeared in a chariot of burning ice, and there was a snapping of laws and a breaking of bonds and the multitude cried "Oh God, we're in trouble now!"
Book Of Om, Prophecies of Tobrun: Chapter 2, verse 7.
From the first edition (since rescinded).*

Oh yes, I am not the bunny who is happy today. I've grouched in the morning and I've grouched in the evening and I daresay I'll grouch at suppertime too for good measure. I am grouchy to the left and grouchy to the right and grouchy everywhere in between. Fear my grouchiness.

The reason for the Grouch is the Pain and the reason for the Pain is the Cold and the Snow. I don't do well with cold and snow. Every muscle is tightened, every joint is throbbing with white-hot pain. Dealing with the pain makes me exhausted and being exhausted makes it more difficult to deal with the pain. Always and in everything this sodding pain as a consistent acid-laced thread and I have had ENOUGH.

During the course of today I have had far too many immediate and disproportionate mental responses to the tiniest of transgressions. Generally it has involved a fervent wish for something extremely uncomfortable to be shoved in a distinctly unpleasant orifice belonging to whichever unfortunate mortal has been foolish enough to cross my path.

I think any minute now I may cross that line between 'being a bit prickly' and 'being a bit of a prick'. So I'm typing up this blogpost to try and avoid doing that in public or to someone who doesn't deserve it.

Thank you for your patience.



* as detailed in Thief of Time by Terry Pratchett.

I Demand A Recount

Friday: felt ok. Came back from work a bit sore, a bit tired, a bit glad it was the weekend, but nothing out of my ordinary.

COLD SNAP

Saturday: spent it in bed. A couple of hours propped up on pillows with the lappie, but mostly, snoozing.

Sunday: a bit better than Saturday, but still confined to the upstairs floor of the house. In the evening, a sudden downturn.

Monday: Almost back to my normal. I even fixed my own breakfast.

REALISATION: I'll be going to work today. I feel ripped off of my weekend. There should be rules about having a non-weekend due to sickness.

DISCLAIMER: Yes, I'm complaining about going to work. Rest assured that if I feel awful again later today, or tomorrow, and I have to call in sick, I'll probably complain about NOT going to work.

I bet you're grouchy too when you're this sore.

I will try and post something a bit more thoughtful over the next week.