Up with the bats and the birds - Fri. 13th October

Finally knodded off at around 1:45am and awoke, suddenly, at 4:30. Not an untypical experience for me. I do not get wound-up by this anymore. On this occasion I lay in bed for a while, running through a gentle routine of stretching and relaxing my muscles, from toe to head. Upon concluding this little ritual I decided to get up, and quietly came downstairs.

Yesterday was a quiet one. I had some stomach pains, but these were bearable. Energy levels not too bad at all (a bit of a dip in the afternoon, that's all), and just a few mild aches in the limbs. All-in-all, pretty good. I tried reading for a while, but just could not hold the information... cest la vie!

I am now off to write some 'things to do' in my little reminder pad. Postick notes, calendar, mobile phone organiser and oven timer are all important memory aides in my life now. When I worked with dyslexic students as an Advisor, I remember encouraging them to use all these means to improve their functioning... which reminds me, I must get a book out about mnemonic memory techniques ( probably Tony Buzan's - although I can't stand the smug little git!). I have some ideas about exercising this brain, which I will share at some future date, no doubt.

Seized by self-doubt - Wed. October 11th

Due to the effects of my illness I have not done paid work for nearly two years, and, quite honestly, I struggle to maintain my sense of self-worth. I sometimes wonder whether I am just a weakling. Perhaps with more will power and resolution I could get a job, and sail off into the sunset. I think that this feeling is exacerbated by the people I know who manage to work and study whilst suffering the effects of fatigue illness (this includes my partner, who has Fibromyalgia). I know that this is stupid of me, but, perhaps I am stupid now. I mean, I cannot read books anymore because I do not seem to be able to concentrate; and if I do, I am completely unable to recall ever doing so. I am not going to list the physical ailments which blight me, because it is the slippage of my mind I want to talk about here.

Just over ten years ago I began an Open University degree, which, because it is a distance learning format, enabled me to be a 'House Husband', looking after my two babies (as they were then). I was very proud to have gained distinctions throughout, and consequently earned a First Class degree. For the first time in my life this gave me the option - the confidence and credentials - of working with my brain (I'd always done manual work prior to that). I went on to work in the field of historical education (working within historic buildings) , and then - perhaps ironically! - became a disability advisor at a local Higher education establishment.

Now, here I am with a doughnut for a brain. I might seem reasonably intelligent and articulate as you read me; but I am not so in 'real time' right now. It is as if someone has held a piece of intellectual blotting paper to my mind and drained away my faculties. It is sapping my confidence, and I am scared. I want to get back my brain, but don't know how. My doctor reassures me that this function will return, and says that I am doing well, but I am not so sure. I am certain that I am not the only Chronic Fatigue sufferer who has cried whilst reflecting on their circumstances - I have tears in my eyes now. It's too hard to write when you're crying - and I might short-circuit the computer! Whatever happened to the stiff upper lip Englishman, eh. Bye.

The way I see it is... frankly, worrying.

I was in a charity shop the other day, looking at some books. One work in particular caught my eye; the author, hitherto unknown to me, was named Scot Land. Another glance and I nearly laughed out loud upon realising that it was a book entitled, 'Scotland'. Later, I saw a book entitled 'Ellington - Master of Strategy'. Being something of a jazz fan I thought I'd take a closer look. Upon inspection, it turned out to be 'Wellington - Man of Strategy'. At this, I did giggle nervously - and received suspicious repressed English glances for this outrageous breach of conformity.

It might be that I'm stoopid; but I like to think it's the effect of CFS-induced insomnia. Seriously, there is a moderately competant human being in here somewhere. Goodnight....

Check out an excellent CFS blog.

I have just moved over to the Beta-Blog format provided by Blogger, and, regrettably, it is stretching my, currently, limited knowledge of HTML to post links to other blogs and sites through my front page. Therefore, in the meantime, I will use this post to direct you to Laura Bzowy's excellent - informative, authoratitive and human - blog entitled, 'CFS-Squared'. I have only just discovered it myself, and I know already that it is going to be a regular place of call for me. Check it out!

POSTSCRIPT: I have just worked out how to set up the link, but have decided to leave this post in place anyway.

Tears - Fri. 6th October

This morning, to my surprise, I cried in the presence of my doctor. He was very understanding. Once I started to talk about: the headaches, the loss of memory, concentration and the exhaustion; the loss of identity ("what do you do?"), the social isolation and loneliness of endless nights awake, alone - well, it unpopped an emotional cork.

Nearly three years, and still no end in sight. No plaster casts to show my disability. "It's all in the mind," says the amateur psychologist ( see article, for a reply to this misunderstanding: ). "I saw him walking his dog the other day!" Yes, I can still walk, but you don't know how I feel; you don't know what it takes for me to appear normal. You don't see me in the dead of early morning, or know the sticky-eyed befuddlement which I see through, sometimes. Do I feel sorry for myself? Yes, a bit - sometimes...

When will it end?

Awake & exhausted - Fri. 6th October (c5:30am)

A restless night. Insomnia is one of the curses of my condition! Some nights I just lie there and give my body a rest. At other times I get up and try and use the time. Upon waking I often recognise immediately if I am not going to get back to sleep. It is an undescribable physical sensation - at least, I have failed to find words to describe it, anyway.

I think that this night's slumber was interrupted due to discomfort in my stomach (griping pains). Over the last couple of months I have been getting pain of varying degrees in this area, and this is currently under investigation. Without wishing to jump the gun on diagnosis, a friend of mine (and fellow Chronic Fatigue Syndrome sufferer) has suggested that Irritable Bowell Syndrome and CFS are often associated. I simply do not have sufficient knowledge of the field to know this, but will ask my doctor, whom I am due to see this morning (I have just written a note to myself).

It is hard to be upbeat at this time in the morning, when you are feeling like shit. At least the headache has receded. However, I know from bitter experience that a price will be paid for this sleep deprivation. I am going to go to the gym again today, and am nervous about it. It's that paradox I mentioned in yesterday's post: do you work through the discomfort and risk crashing, or do you rest up and risk not breaking the cycle of exhaustion. I'm going for the former approach.

Lie Down or Live - Thurs. 5th October

I am currently experiencing one of my headache phases (normally last about three days). Had a real slow 'creeper' this morning. I should probably lie down for a while, but I am so completely sick of lying down! There is not any form of medication which can soothe these bastard heads, so I have just got to live with them.

I am tempted to go for a walk, but am worried about the pain worsening until it is almost unbearable to take a step (this has happened to me previously!). I think I will try pottering about doing some housework for a while. Then, if things feel better I may venture out. It might not be exciting, but housework gives tangible results, and when you feel like this it is gratifying to achieve anything. I am reminded of my teaching days, when I would try and downsize the learning objectives in order for less able learners to gain a feeling of achievement. This is what I often try and do myself - now that I am less able in some ways (the phrasing is deliberate, and I intend to return to this in a future post).

This brings me on to a further point about Chronic Fatigue Syndrome (CFS). We sufferers often have to re-programme ourselves as we strive to regain health. Prior to my 'trigger' illness, I was a high-octane personality; always tearing into things. This way of living is not sustainable for me now, and I find it so difficult to change my ways. Indeed, it is this habituated tendency to rev-up which makes my 'up' periods so precarious. I have learnt (slowly!) that I have to stay within my capabilities when I am feeling better, otherwise I crash. On the other hand, it is important not to allow this fear to hold you back from re-entering the world. We tread a fine line here...