Thursday, 26 February 2015

A Quick Dash

I don't know where this is going, so eventually it will just end. 

I saw Sam Cleasby on BBC Breakfast this morning. I had been pointed in the direction of her post "To The Lady Who Tutted At Me Using The Disabled Loos" a few days ago and it was well worth a read. The blog is about inflammatory bowel disease, it's something we live with here. Dan has ulcerative colitis, and sometimes it's not very nice.

The thing about being a chap with UC is that public toilets can be a bit of a nightmare. The ladies toilets consist of cubicles, the blokes toilet don't. There could be a couple, or sometimes only one cubicle, often a bit grim and frequently in use, occasionally not working - especially true in the case of our local trains. But when you've got to go, you've got to go. 

Along with our emergency winter kit in the car we carry bin bags, wipes, toilet paper and spare clothes - just in case. It's never got to that point, but there's no way of knowing when they might be needed. People in our life know Dan suffers from this and sometimes it means he can't have a pint, or we have to dash off, or we can't go out for a meal. I do think people sometimes believe it's an excuse to get out of things though.

What changed things for us is when the former Manchester United and Scotland player Darren Fletcher revealed he had the condition. It had such an impact on his career, with him having to take a break from football, and having surgery I think that was the first time people we know really appreciated, if not understood, how debilitating it can be. In some cases it also kind of felt like people were taking it seriously as a real thing for the first time. This post "Ten Things Not To Say To Someone With IBD" resonated with me, I'm sure everyone with any illness or disability will have a similar list. I know people say things like this because they don't really know what to say or they want to show support, I'm not being nasty, it's hard to talk about illness, especially when it involves things we'd rather not mention. 

Dan is really fortunate in that he hasn't had to have surgery and his medication helps with the worst of it most of the time, it helps with the blood loss and much of the discomfort, but he does get flare ups and they can have a big impact. People have enough to deal with without being mocked or judged by people (ill or not), why not be kind instead.

14 comments:

  1. A very thoughtful post on this issue. I have suffered from bouts of IBD in the past, when I have been particularly stressed and it is painful and uncomfortable. Nowhere near as difficult as dealing with ulcerative colitis, might I add. We do have a relative who suffers from this and he has had to make some major lifestyle changes in order to avoid it getting worse, necessitating surgery.

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    1. Thank you. IBD is very unpleasant. Illnesses like this can make your world seem very small when you feel chained to your loo, or unable to function normally due to pain, bloating etc. Hope you avoid a flare up for a very long time.

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  2. I agree. We all should be kinder to each other and have more understanding that
    we are all different with all different problems some you can not see on the outside.
    Then the world would be such a better, nicer place to live. I have brought my children up to respect and treat people how they would like to be treated.
    Rosezeeta.

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    1. Thanks Rosezeeta, you are so right. As the old saying goes - if you don't have anything nice to say, don't say anything at all.

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  3. My husband has it too, thankfully medication takes care of most of the discomfort.

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    1. Glad to hear his medication is helping, I wish him well.

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  4. Very well said. My Mum had cancer of the womb when she was mid to late 50s. Because of adhesions she then had to have a huge part of her bowel removed at a later date as stuff was building up and every few weeks she would be bed ridden and then be violently sick.

    She has constantly to be aware of where toilets are, as everything rushes through, as you said, it is very liquid. She can't absorb vitamins and has to have B6 injections every 3 months. She always looked very fit.

    Because of this she disliked going on holiday as she was embarrassed by this.

    By the way, she is now 94 years old but is still suffering the same condition.

    I can understand fully your predicament. People can be so cruel and smug about their own good health.

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    1. Thank you.

      Even though Dan has known what the issue is for a bout 10 years I don't think we can really appreciate what it means for it to be a whole life thing. He's very lucky in that it appears from his many and frequent blood tests that he doesn't have an issue with absorbing vitamins etc, but I know it is a problem for many people. It's easy to see how conditions can take over your life.

      Best wishes to you Mum.

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    2. Thanks TdL for that. She's quite incredible for her age but suffers from the hump back (she says it's round shoulders) and it presses on her nerves and makes her feel hazy/light headed. The subject of toilets etc is a constant subject in our house and has been for many years!

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    3. Bless her.

      I can imagine it's a conversation topic, Dan's step dad died of bowel cancer a few years ago so there have been many toilet-based chats over the years.

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  5. I have great sympathy with anyone who has 'toilet issues'. For the last 12 years I've suffered from stress related IBS. Every trip out involves knowing where all the public toilets are. It still feels such a taboo subject anything related to the toilet !! Sarah

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    1. The taboo is a huge issue. My female friends will happily talk about "lady troubles" when we're having a coffee and a natter, but as soon as IBD comes up it's all hushed tones.

      I think people must think I'm a mystery shopper for public toilets as I know how good, or not, they are anywhere we've been! We're very fond of Westmorland services on the northbound M6 :)

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  6. I read the same blog and found it really emotive - who are we to judge her?

    Lizzie Dripping

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