Relief at Diagnosis

I have been very uncomfortable over the last few days. Had a pain centred on the area of my belly button. Yesterday the doctor diagnosed me as suffering from an umbilical hernia. He pushed the 'extrusion' back in (ie putting my insides back inside!) which brought instant relief. I am going to have to have an operation, but at least it is mendable.

I continue to suffer from an upset stomach, and this is most probably Irritable Bowel Syndrome (the blood tests and stool sample don't indicate any anomalies). Apparently, this means I will have an enema followed by an endoscopy (camera up my arse!) on the day of my operation. Wow! I just can't wait for that day to come...

I was going to write something else, but I just can't recall that thought at all so I will go now.

Bye ~ Colin

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...

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Into the Gym - Wed. 4th October

This is the gym I go to. The gentleman with the weights is NOT me - he's much leaner and younger!


Nearly three years since I was first diagnosed with CFS. I am just the wrong side of forty, and I am sure that 'middle aged spread' would have occurred anyway. However, this tendency has been accelerated, I think, by my fatigue. Acting on Doctor's orders, I have attempted to discipline myself and exercise. Trust me, the last thing I want to do are press-ups, weights and walking - but I have managed to do some light work. Nevertheless, I am now several stone overweight, and this cannot be doing me any good.

Accordingly, I requested a gym referral from my Doc, and this has just started (last Friday). This entitles me to free access to a local gym for three months, under the direction of a qualified gym instructor. I have been three times so far, and I am convinced that it will do me a lot of good. Monday's session was the most testing, as I had one of my three-day long headaches. I did waver a bit, contemplating giving it a miss. However, given how rarely I feel physically comfortable I decided to grin and bear it. I gritted my teeth and completed the session, which much pleased me. Sure, later on I was lying prostrate on my bed for a couple of hours with a pounding head - but I probably would have been stricken anyway, regardless. I consider this new regime as a way of my taking up the reins of my own destiny.

Today, was better. Energy levels were very good, and I was comfortably able to do my work. It helps that I - through boxing, football and martial arts - am familiar with gyms and exercise regimes. I couldn't help reminiscing about the days when I would routinely do x500 sit-ups a day, no bother. How sad I would sound were I to voice that fact. What a sad middle-aged git! Still, this is where I am now, and I am pretty pleased with myself today.

On a more negative note, I had to ask Lynn (my partner) the names of a friend's wife and child today. Memory loss is one of the banes of my life with CFS. Pre-illness, I was noted for having excellent recall, and I miss it. I also find it very disempowering and humiliating to have to ask for such information. Many times I actually hide my befuddlement, and do not ask. Perhaps, with a fitter body will come a fitter mind. We shall see...

~ Colin

Chronic Fatigue Syndrome - A Human Story

Hello, and welcome to my journal. This is a blog which - as the name would suggest - attempts, both:
-> to chart my experiences as a sufferer from Chronic Fatigue Syndrome (also commonly known as, M.E.), endeavouring to regain full health.
and to...
-> record my reflections about the illness; my feelings (highs and lows); my victories and set-backs. This is, after all, a human story.

I do not set myself up as an expert about this illness - far from it. However, I do know what is to live with this debilitating condition. I am not going to attempt to provide a chronology of my illness, as this, I think, would prove really tedious. Besides, I am sure that I will refer to this in the course of my journal, as I reflect upon the progress (or otherwise!) I have made. Instead, let me lay out here my reasons for starting this journal. They are as follows:

1/ I would like to reach out to others - fellow sufferers and non-sufferers alike - and say, "you are not alone"/"this is what it's like", respectively.
2/ I think that, by charting my own thoughts and feelings on a day-by-day basis, I might start to see trends and patterns that would otherwise remain hidden from myself.
3/ Furthermore, it may be that other people can offer ideas and options which would never otherwise occur to me. Equally, I am always willing to share some of my own strategies.

There are certain aspects of CFS which are common to all sufferers (for instance, varying degrees of fatigue). However, I think it is important to acknowledge that everyone's experience of, and reaction to, this bewildering syndrome (cluster of related symptoms) is unique and individual.

Finally, I just want to make the point that I am more than my illness. I have CFS, but I also had/have a life before and beyond it. I am determined to recover, and to do so - I intuitively suspect - I have to maintain a 'healthy' sense of my own self. I also have to 'imagine' a better future; making sometimes tiny steps which will direct me to that reality.

Thanks for reading this ~ Colin