Feeling Fragile

Life throws obstacles in the way of each of us and we are all given different skills with which to handle them. In my life I've had quite a few obstacles already, and I haven't always handled them well.

Another obstacle approaches, but it may, if I handle it positively, sweep away some of my problems before it. I am being offered another chance to perhaps do some of the things I have never been able to do with the disabling bowel condition I have. This is positive, but the price I must pay is a heavy one. 

Another ostomy, this time for all time. 

I will be physically different to other people, and my mind needs to be comfortable with that. But I know I have more reason to worry about how my mind will cope than how my body will cope. If my mind can cope as well as my body, then this could be a very positive change. 

I have never felt more fragile than I do right now. 

A 1983 Selfie, there were no digital cameras or mobile phones back then so I took a shot of myself in a mirror. Spot the colostomy bag - underneath the skirt I made from a bed sheet which I died orange in a bucket! 

Light on a Dark Day

Sometimes when I write I find that I dance around issues, trying so hard to miss out the less pleasant bits of my life that I tie myself in knots. But the world is changing, particularly the world of social media. “Honesty” is clearly now acceptable, and so I am going to give it a go. Warts and all.

You see, my bowels don't work properly. I have written before about the extensive surgery I had to have 30 years ago (10 operations over five years on my lower abdomen, three more 12 years later, and two for altogether other reasons) and I have hinted at the long period of recovery I had back then. I wrote about it positively because it certainly was positive – and it fed my love of cycling, which has grown and grown ever since.

But my treatment also damaged my bowels. For a time whilst I underwent radiotherapy I had a temporary colostomy, and I was too ashamed of it even to tell some of my close friends. I kept the full “horror” of it from my parents, with whom I officially lived at the time (I was 19 years old). I was traumatised – and I just couldn't wait for the colostomy to be reversed. I was scared it never would be. When it was, probably too early, I got bowel adhesions. I couldn't eat for six weeks and I went down to 5 st 10 lb. Eventually, after accepting the inevitability of death, I somehow recovered. My body just decided to get better.

But the bowel adhesions persisted, and the radiotherapy had burned me inside, scarring me irreparably. Ever since then I have had episodes of blockage which are excruciating. I also have sickness, diarrhoea, constipation, faecal incontinence, and never, ever, a fully normal day. Each day I go to the loo between 0 and 20 times, at any hour of the clock. I get virtually no warning. In thirty years, I have probably had a “one trip to the loo and then forget about it” day maybe half a dozen times.

I had an unconnected operation five years ago, and the surgeon, in addition to doing the job he'd planned, spent 2 ½ hours dividing adhesions. He said to me afterwards that my bowels were such a jumbled mess that he was surprised I could go to the loo at all.

This condition has a name no-one has heard of, and it's not life threatening. The doctors are not interested because nothing can be prescribed for it. And yet the fear of it affects me every minute of every day. It's cost me my job, and it regularly renders me housebound. It distresses my husband monumentally. It stops me riding my bike, and it interferes with every plan I make.

So my point – what is it? Well it's this. If you search Youtube you can watch a lovely pretty 23 year-old girl called Laura change her ostomy bag. You can see a gorgeous guy demonstrate what he does with his bag to secure it when he's surfing. You can see a model in a bikini, her ostomy bag showing above her bikini on her simply stunning body.

These people don't hide their issues, they get on with life, honestly and grasping every opportunity. I applaud the element of openness and honesty that social media has facilitated for these people and I admire each of them immensely. Social media helps people to find support amongst others who are in the same boat as them, but half a world away. The support changes opinions, and the exposure changes attitudes. There are critics, but I am not one of them.

If I'd been able to be find inspiration from these people thirty years ago, I think my attitude to my colostomy might have been much more positive. And now, on some of my worst days I find myself thinking – how might my life have been, if I'd kept that bag?

Silly Targets

I have just returned from a 4 week holiday in Denia, Spain, where I went intending to do some winter cycling. The trouble is that out of 27 cycling days, I managed to ride on only 12 of them. The rest of the time I was ill with a severe cold and a feverish chest infection – even on some of my 12 cycling days I was too ill to ride far. All in all, it was a fairly hopeless trip.

I wasn't alone, almost everyone in the hotel was ill to some extent. Every part of the place resounded to the sound of coughing for the whole time I was there, like a constant drone of background noise. I kept thinking I was in a hospital, but I would imagine that in a hospital hygiene would have been exemplary; in the hotel, there were opportunities for contagion everywhere, particularly in the buffet-style food hall.

I knew almost as soon as I arrived that my chances of escaping infection were slim. Of around 59 people in my cycling group, at least 50 of us were ill. Of the other guests, almost all of them elderly, illness seemed to be so common as to be acceptable; I was astonished and appalled in equal measure by the attitude of the Saga holiday representatives by the considerable efforts they made to distance themselves from any responsibility whatsoever for blame, despite the fact that many mitigating procedures could have been, but were not, introduced.

It's given me cause to think about my little targets. I was born without the competitive gene, though setting targets for myself seems to be in my blood. It's a trait which can motivate me to exercise when I don't feel like it, and that can be a good thing. But it's also a trait I can use to beat myself up when things don't go according to plan. After this holiday, during which I cycled just over a third of the miles I planned, I am struggling to find anything positive about my time away on which to base a “good” memory, though the wonderful friendship of quite a few new friends is an obvious highlight.

I will go again to Spain, after all it is not the country that I blame for my rotten holiday and it is a beautiful country. The Costa Blanca region has to be one of the best locations in Europe for winter cycling (the many professional teams that base their winter camps there bear witness to this) and the mild weather provides crystal clear light to emphasise the drama of the mountainous scenery. I just need to find a different place to stay, and a way to avoid illness.

Now that I am back in the UK, meanwhile, I need to get some miles in to prepare myself for my summer cycling calendar – too bad I will need to do this in bad weather!

Paul takes me for tea on one of my 15 non-cycling days!