Monday 20 October 2014

Thoughts

Hi everyone,

I wanted to talk about something which I am sure I have touched on before but probably not gone in to much detail. I know a lot of people read this blog, and look to it for a positive story and good outcome from a pretty crappy disease (excuse the pun). I am often conscious of not freaking out pending ostomy owners or making things seem awful - because in so many ways they really aren't that bad. However, at the end of the day there are aspects of the disease and having an ostomy which are hard to get your head around.

One thing Margaret has had a huge effect on is my self confidence. I think it is normal for everyone, men and women, to have a crisis in confidence from time to time or to have bad days. But Margaret makes these bad days worse, something I am sure other Ostomy friends can relate to.
In many ways, however, she has changed my outlook on my appearance for the better. As I said before, I have managed to lose 2.5 stone in the past 9-10 months - something which was largely spurred on by having Margaret. I also think I care less about the little, stupid things about appearance which are very easy to get sucked in to. I have found that that bit of cellulite on my thighs or a tummy roll when you're in a bikini doesn't matter as much to me anymore.

The upcoming colonoscopy and subsequent decision on whether I can have Margaret reversed has got me thinking a lot. The thought of having Margaret for the rest of my life is incredibly overwhelming. I try to think of it one day at a time, or one week at most. The idea that there are still decades ahead of living day in day out with a bag stuck to my stomach is quite hard to get my head around. My reaction when I was told I had Margaret wasn't normal, I laughed. Since then I have been praised with how well I have dealt with it and how I haven't let it stop me. Despite being told I had a 1-2 in 10 chance of having a reversal, I don't think I have ever really, properly considered the fact that she really might be forever. Even now I catch myself thinking, "When I don't have Margaret I will be able to wear that again" or "Dating will be a lot easier when I don't have Margaret" - these are really dangerous thoughts because the reality is, it is very likely that me and Margaret will be mates for a very long time.

Until Margaret, my Crohn's was a largely hidden disease. Yes there were times when I looked really poorly, lost weight, lost my hair, gained a bunch of weight on steroids or spent time in a wheelchair but more often than not a stranger wouldn't know I had a long term health condition. In some ways this made life harder. People wouldn't or couldn't understand just how bad it could be because they couldn't see anything, it was hard to understand. The plus side of course was that unlike many awful health conditions the lack of outward symptoms kept the disease hidden and allowed me to live my life without always being seen as "ill". Since Margaret, however, I live with a constant reminder that I have a disease and will have this disease for the rest of my life. Every day I have to feel, touch or deal with Margaret. I can't ignore it or forget it, I have to plan around it and think about it all the time. I know that 99% of the time the advances in the stoma wear and fashion means that nobody has a clue I have her, but I always know. Yes its a lifestyle change and something that I have adapted to very quickly and I have never let Margaret stop me doing anything but she is also something I can never escape from. I can't just decide I have had enough for a couple of hours and need a break from it all, it is constant and will likely be constant for the rest of my life. On the day of my graduation, for example, rather than relax and enjoy the ceremony I spent an hour and half worried sick that Margaret was going to leak or swell up under my dress and that the auditorium of people were going to see it. The same thoughts go through my mind every time I am at the gym. It can be draining as it is without adding in the fact that it'll probably be this way for years. Although it is also really important to add some perspective to my life, there are people out there who are suffering a hell of a lot more than I am and dealing with things which leave me in awe. I only have to switch on the news to consider myself insanely lucky.

It isn't however all doom and gloom. In the months since Margaret I have graduated (on time) with a 2:1, gone on holiday and many nights out, lost 2.5 stone, been interviewed for the newspaper and on the radio, kept up this blog with amazing celebrity endorsement and lots of lovely readers, raised over £4,000 & set up my own business. It does give me great hope that despite the fact I don't like what I see in the mirror, if I do have Margaret forever I will still achieve and do everything I want to. And you never know, in a months time when I see my consultant, I could be writting a Bye Bye Margaret post.

Lots of love
Gabi xxx




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