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