You Never Know...

I had a phone call from an ex-colleague, now retired. He had some sad news - a colleague, younger than us both, has suddenly died.

Whilst I was plodding along as a Social Worker, she was ascending the promotion and responsibility ladder, and reached some dizzy heights. She was, however, an out and out workaholic, with a very tight focus. Goes to show, with ME and all, maybe I'm the lucky one. There are points to ponder, wherever you look. She had her vision, I have mine. Mr Yeats states my position better than I could:

THE LAKE ISLE OF INNISFREE

By William Butler Yeats

I will arise and go now, and go to Innisfree,
And a small cabin build there, of clay and wattles made;
Nine bean rows will I have there, a hive for the honeybee,
And live alone in the bee-loud glade.

And I shall have some peace there, for peace comes dropping slow,
Dropping from the veils of the morning to where the cricket sings;
There midnight's all a-glimmer, and noon a purple glow,
And evening full of the linnet's wings.

I will arise and go now, for always night and day
I hear lake water lapping with low sounds by the shore;
While I stand on the roadway, or on the pavements gray,
I hear it in the deep heart's core.

Nothing continues to happen

I'm discovering that it is a hard call to write a riveting blog about M E. The brutal truth is that for most of the the time, not much happens. I've been in a foggy dazed place ever since returning from Edinburgh on Tuesday. I had a bit of a false dawn on Wednesday, overdid things, and have been paying for it ever since.

Having a chronic condition can be very boring. It's not a dramatic, flashing blue light telegenic situation. It couldn't be further away from "ER". Life just grinds on.

Mission Statement - Permaculture and me

Gosh, that sounds very portentious and organised. Now I've been at the blogging for almost a month, I thought I'd take stock of where it's all going.

So - the key purpose of the blog will be to chart my progress through my ME midlife crisis. It's a diary, it's a chance to let off steam, it's a chance to talk about music and and writing that appeals to me. However, it will also record my progress from being a hectic wage-slave, via illness and unemployment, through into a new way of living on, through, and with a small patch of land.

There's a fairly happy coincidence of circumstances here. In a Permaculture system, the land is left, insofar as practicable, to look after itself. For example, mulching is preferred to digging, and every opportunity is taken to lessen inputs, whether by eliminating spending on artificial fertilizers, or by counter-productive disturbance such as digging. As I am too poor to spend much, and too ill to dig much - we are in a good position to pursue Permaculture. I hope to attend courses, learn more, practice more, as time passes. Other skills, such as green woodwork and poultry husbandry wiull be part of the package. The objective is to live a calm, natural life and find some healing in doing so. There will be progress reports...

Chicken maintanance

Well, I just cleaned out my little chicken coop, currently occupied by half a dozen "teenage" chooks, all about 12 weeks old, and very full of themselves. It's the first useful thing I've achieved today - it's been a while since I felt as boisterous as my young birds do!

Bantam keeping is a great PWME activity - it never asks too much of you all at once, and the responsibility for the welfare of the little girls (and three teenage boys) is a good motivator on the "blah" days when I really don't feel up to move at all. The rewards are pretty instant also, it's always a pleasure to find eggs in the nest box.

This hasn't been a great week. Since my day at the Big Tent Festival last Saturday, I have been flat as a fluke - foggy, headachy, utterly without energy, either too hot or too cold, and constantly perspiring. We have a wedding reception to attend in Edinburgh tomorrow, I really wonder if I will be up to it, although it will be nice to see both our friends at the wedding, and also the friends who have offered to put us up for the night in Morningside.

Housing issues lumber on. We've been offered the lease on a great old house in the country - hurrah! But - the buyer-to-be of our house has just had the sale of her property fall through, so we remain in limbo. This is not good.

As ever - we shall just have to wait and see...

The Big Tent Festival

I was really keen to attend this festival again this year, ME notwithstanding, and deliberately laid low for a day or two to try to build up a reserve of stamina for it. We went on the Saturday, Alastair, Susanneke and I and arrived just after 10.30 on a lovely summer's day. The previous day's rain and the presence of some pretty large vehicles and plant on site had made a fair mess of the ground, and wood chippings were being liberally scattered to counter the clarty underfoot conditions. Fortunately, the weather stayed good, and the ground conditions improved as the day wore on.

My plan was to spend 30 minutes or so looking round, followed by 30 minutes rest as device to get through the day, and it worked fairly well. I managed to spend time talking to the people at the Scottish Basket-weaving Circle, the green woodworking display and the Permaculture Association. We attended an hour long Permaculture presentation which was very good, but which I actually found to be the most tiring activity of the day. It was a very participative workshop, and the sustained mental activity was a challenge to my foggy grey cells.

In the passing, I managed to hear some very good music from the stage, ate a buffalo burger, and had a smoothie mixed by a bicycle powered food processor. I collected lots of information, including how to grow edible fungi on brash wood, how to build with straw bales, and a whole load of other post peak oil useful information. I found out about a community owned cider press that is available to local groups. I met a good few friends, including an erstwhile colleague

The sun shone, and the Falkland Estate looked lovely as ever, it was a great day out.

WE came home at about 5.30. I dozed all evening. Sunday came and went - I never really woke up. Monday came - I actually got out of the house with Susannneke long enough to go to Cupar for a hair cut - I felt lousy all day though, and that has carried onto today - I'm still feeling weak and wobbly.

I'd do it again, but it is really a bit of a bugger when spending a peaceful day out locally from 10 am to 6 pm puts you out of action for at least three days afterwards.

Ups and Downs

Yesterday was a good day, i was out and about for a couple of hours yesterday afternoon. Today was payback time - one of those groggy foggy days when even the mildest exertion leaves you tired and struggling. The plans for our move are still stalled waiting for the house sale - it's becoming rather tedious now.

The Boss and I

Well, I passed another ME milestone this week. Alastair, my eldest son and some friends were going to Glasgow to see Bruce Springsteen. There was a ticket available for me. But, I knew I couldn't cope with a trip through to Glasgow and four or more hours in a crowded concert hall, so I had to let the chance pass.

I was talking to a friend with ME later, who told me that a similar experience was the thing that suddenly made his situation crystal clear to him. The Boss incident did the same for me.

ME - don't it make you feel like you're a rider on a downbound train?

A Day in the Life

I'll be adding to this post as the day passes, I thought I'd log a day in the life of a PWME.

I woke at about six, feeling foggy, groggy and clumsy. Normally, at about 6.30, I go downstairs and make our breakfast, but I cried off today on the grounds that I felt I was highly likely to drop things, break them,and generally make a mess. So Susanneke did it instead! After she set off for work, I decided against a shower, as I thought I might fall, and got dressed. Flynn, my sagacious collie/greyhound red merle lurcher, takes this a cue for our morning walk of about 500 metres to the village shop, returning via the village green. However, proceedings were interrupted by a phone call from my son Douglas, who announced the happy news that, depending on the results of a medical, he has been accepted to train as a police officer with the Tayside force. Hurrah! I called Susanneke and my parents to let them know. It's amazing how a bit of good news gives you a lift!

So, belatedly we set off, Flynn bounding about as he does, me doing my impression of Lurch from the Addams Family. We got to the shop and bought 6 morning rolls, a Guardian and a Dundee Courier. I got home and felt the usual mini-crash happen. In twenty minutes I felt a little better, so I put the kettle on and went into the garden to see to the hens. I have six layers of different breeds, and six youngsters that I hatched under one of the layers when she was broody. Three of the youngsters are cockerels, and I'd like to keep them to breed from next year, if we can manage our move before they start crowing and make the neighbours complain! I should tell the estate agent to get my house sold or the poultry gets it, I suppose!

Now I'm sitting with a cup of coffee at the computer. I'm feeling a bit foggy still, and this seems to be a tinnitus day :( other wise, so far, so good. It's 09.52

11.23 - I had a sleepy hour. Tried to read the papers, but couldn't concentrate, ended up dozing on the sofa. I woke up hungry, so had a roll with salami, then came up to add to this post. The Dylan song popped into my head for no apparent reason, so I added it to the blog, and then updated here.

11.56 - It's a beautiful day - warm, with a light breeze to stop it being too warm. Feeling relatively perky, I took Flynn down the lane to a nearby open space. Bounded by the Ceres burn, there is a football (soccer) field, amongst trees and hedgerows. I foraged some greens for the hens out of the hedgerow - the meadowsweet is the "plat du jour", and I found some ripe Sweet Rocket seedheads which I collected, some for me, some for Alastair, my eldest son, who wants some for his garden in Dundee.

I'm probably going to go quiet for a while now - I can feel the onset of the jelly legs.

15.34 - I've just woken up and I'm feeling fairly yukky - dizzy, disorientated and foggy. From noon to 1400 I read the paper, and dozed on and off. At 1400 I gave up trying to stay awake and went to lie down on the sofa. I slept for over an hour, and then took 20 minutes or so to wake up enough for the dizziness to become manageable enough to stand up. I took a little walk into the garden, to find the that I had an egg to collect, then came up here to update.

1915 Dopey and slow since the last entry, I read emails, and was drowsy, headachy, and "tuned out". Susanneke home at six, we ate. I'm in front of the TV for the Tour de France highlights just now.

2030 Tour highlights over, I took the dog down the lane for five minutes to wake myself up - a partial success. A neighbour's son dropped in and asked me to witness a passport application - which I did. The coffee pot is on just now. After my coffee, it will be bath and bed for me at about 2200.

Reading back over this record, I think I've picked a pretty typical day. I wasn't so good first thing as I often am, and I sometimes am a bit brighter in the afternoon. On the other hand, I've had plenty of worse days. I'll revisit this in a few weeks and see if there are any conclusions to be drawn.

The Story So Far

I've just "celebrated" the first anniversary of my ME. I'd had a couple of bouts of illness during early 2008, culminating in an illness that lasted for a week in June, during which I was running a high temperature, experiencing soaking night sweats, and feeling deathly. I was given antibiotics by my GP which seemed to clear things up, but slowly and surely the signs of the chronic problem began to show. I tried to return to work but simply couldn't get through a day. My GP was very efficient - he quickly had blood tests organised. All came back negative, so we were left with the differential diagnosis of ME. I've been blundering about in the fog ever since.

Until I was about 40, I hardly had ever set foot in a doctor's office, and the concept of being unwell had seldom occurred to me. However, when I was 41 I had a year during which I felt increasingly unwell before I was diagnosed with bowel cancer. I had surgery, and a subsequent scare with a pulmonary embolism, and recovered well. Perhaps I was a little more prone to "tummy bugs" than some, but I was perfectly able to cope with life at work and at home as a parent of 3 children.

The next glitch began about 3 years ago, when I began to feel fatigued, unable to cope, irritable and all the rest. Tests soon revealed that I had developed Type 2 Diabetes, along with a side order of depression (diabetes and depression frequently co-occur). I gradually improved and returned to work after a six month lay off. Metformin and Fluoxetine became part of my daily routine, and remain so. I'm fairly confident I'm managing the diabetes, and I'm so scared of a return to the depression that I work hard to prevent it (this blog is a part of the therapy, I guess). Within a few months of my return to work, however, the niggly illnesses had begun that culminated in the ME.

So now I sit at home. My job went on grounds of my incapacity in April, although there was no suggestion that I might be entitled to claim some or all of my pension, and I remain in correspondence about this matter. I have been introduced to the wonders of Jobcentre Plus, Pathways to Work and other Government initiatives. None of these bodies seems able to comprehend that I am unwell, but I live in hope of convincing them. The DSS are so unimpressed that they have suspended my Employment Support Allowance. However, I can't claim Jobseekers as I am not certified fit for work. I am appealing the decision about my benefits - and await an acknowledgement of that from the DSS. Meanwhile, the bank make polite but firm requests about my plans for the mortgage I can't pay. Adopting a state of Zen-like calm becomes increasingly difficult. I grimace when I think of all the times I might have said I was happy to live in a welfare state where every citizen could expect to have their needs met - but illusions should be shattered, I guess, so that the truth is revealed.

Symptoms List

I thought I'd list all my symptoms here, so others can see, and also to provide a baseline for me to check back against later:

Headaches, blurry vision, dizziness, muffled hearing, balance problems, inability to remember words. poor memory,poor concentration, snuffles, tiredness, lack of stamina.
Muscle weakness, clumsiness, muscle twitching, aches in legs, poor body temperature control,, easily tired in company, by emotions, mild shocks like a slamming door - anything that provides an adrenaline rush.
Irritable bowel
Messed up sleep pattern
Slow to waken and/or react