Thursday, 5 July 2012

If it's not one end, it's the other.

Long time readers will know that my gastric system, decided to give up the ghost last year and I landed in hospital. Since that time I've managed to, if not greatly improve the situation medically, at least improve my acceptance that we may forever be frenemies. However, of late it has been getting worse. Obviously I wasn't paying enough attention to him and he's gotten a bit shitty (pun intended). As such, the frequency of my use of public toilets has increased significantly and my ability to get out is even more limited.

Yesterday I had the joy of sitting in the toilet of the L-plater's dentist, exploding at both ends, whilst grabbing the walls trying not to pass out. He luckily was oblivious and just happy to finally have his braces removed. Though apparently the desk staff did alert him to the fact that I was rather green and stuck in their loo when he did come out. And what caused this delightful hour of my life? Who the hell knows? I haven't changed my diet, lifestyle or meds. I didn't do a heap the day before. I didn't step on a crack or walk under any ladders. For whatever reason it felt a tad fractious and I paid the price yet again. Well so did the L-plater if I'm honest. It's hard to be excited about getting your braced off after 22mths when you're helping your mum to stand and walk in a straight line and then driving her home using all the short cuts whilst she's groaning and holding onto a puke bag for dear life.

Or there's last week where we had to drive the 10 minutes to the next town to pick up the youngest and we stopped not once, but four times on the way there and back. Admittedly, two of those times were aborted because a) the Victorian National Park Service decided to lock the public loos stating they didn't have funding to keep them clean. This was clearly evidenced by the fact that the one unlocked loo in the park was craftily decorated with fragrant nard sculptures by some arsehole. It sure made those treefern covered hills look tempting. And b) we drove another two minutes to the soccer oval on the outskirts of the town to find that they too were locked. At which point a tear may have been shed and the idea of simply dropping my granny undies where I stood was looking pretty darn good. Who the hell locks public loos? You people should be shot, or dosed with laxettes and let loose in an area where every public loo in a 10km vicinity is locked. How'd you like them apples? Eventually, we found unlocked loos in the town centre. As I sat there on that paper coated, bent and broken loo seat doing my best Mt Vesuvius impersonation, I may have said a prayer of thanks to every deity known to man for being open and sans nards. After picking up the youngest from his drama class we headed back to the same loos only to find someone had power spewed over the bowl, floor and walls and I was forced to use the men's silver bowl of foulness. Even with a Brazillian rainforest worth of loo paper covering that icy (it's Winter here in Oz) metal bowl it was only my desperate need that made me sit. And as I sat there abluting with gusto in that breezy, moist and fragrant Petri dish of humanity I thought to myself, "self, you are truly living the dream". 

And such has been my life of late. Admittedly I am well overdue to go back to Gastroman. Last time he told me there was little left for me to try except for one med that was so far out of my price range as to be inaccessible. Add to that I have had so many other specialist appointments, a son with knee surgery and ongoing rehab, and just a general unwillingness to have yet another invasion of my orifices by a complete stranger, and seeing Gastroman has sort of slid down the list. 

Logical me knows I should go back. Today for instance I am plied with meds and yet cannot keep even water in. I feel like I am permanently on the edge of yet another power spew or fire hose trots. It makes functioning rather difficult. Big props to my mum today though. When mid phone call I sort of screamed hysterically "I have to go and thrown up" she didn't bat an eyelid, just a quick, "I'll let you go, so you can throw up in peace" and she hung up. Go mum. It's times like these that you need those around you to not ask questions or get in between you and your porcelain lover so you can just focus on the task at hand, no matter how unpleasant it may be.

It's funny what you take for granted in life. Years ago I never thought much about going to the loo and I'm sure most healthy people don't. Now, it is an ever present thought in my life. If I am to leave the house I have to plan where I'm going by loo availability. I also carry emergency loo paper, towels and underwear. It's hard not to get depressed about it all really. 

I know my parents and in-laws are little horrified with my openness about this issue. But lets face it I'm not alone. I also know it's not an area where you'll find much discussion in the Dysautonomia texts. It might be in the lists of possible symptoms, either constipation or diarrhoea, but there is little about what it means to actually live with the issue. It's not as simple as too much movement or not enough. It's the fact that tonight I can't drive my son to footy practice as the chance of exploding in the car is too high. It's the fact I am forced to use foul public toilets which others treat like an abhorrent ablutory free-for-all. It's the fact I can't leave my house to go shopping yet again because my bowels have other plans. It's the fact that the simple act of standing can be the only thing I need to trigger yet another gastric apocalypse. Buns of steel, and a perky can do attitude just don't cut it when your digestive system is broken.

So there you go. The saga continues and I am stuck in the batcave once more. standing and walking is a bit of a death defying act thanks to shakiness and weakness. Given it all leaves you pretty exhausted I'll no doubt sleep which is always a bonus (though the waking up with a mouthful of vomit is less desirable). No doubt my dreams will feature the things that need to be done to the people who lock toilets or act like foul pigs just because it is a public loo. 

Hmmm given that I'm space-cadeting today I wonder if I should push post, oh well. Sorry if it's a little rambling or incoherent.

Michelle

PS don't forget to leave your questions on Question Time, and I'll endeavour to answer them at the end of the week.

Now because I know there are others in the same boat I thought I'd re-share a little ukelele song that the truly lovely Elly from Bugginword did for me after my hospital stay last year. Every time I listen to it, it makes me smile and I hope it makes you smile to.

22 comments:

  1. I have carried what i like to call my "shit kit" with me everywhere i go for years. It consists of a zip lock plastic bag, loo paper, those moistened bum wipes, clean undies, hand sanitiser, and of course anti-diarrhoea meds (may as well be sugar pills for all the good they do sometimes). Being chronically ill can be messy. You might say it "blows" :)

    Before i got sick i would never have dreamed of doing a number 2 in a public loo and no 1's were a rather flexible display of balance and agility :) those were the days! the way people treat public loos is disgusting :(

    ReplyDelete
    Replies
    1. A "shit kit", I love it! I'm going to call my bag of tricks that from now on. Ahh the heady days of normal bowels and bladders. You never really appreciate it until you're trying not to pass out in a rancid public loo.

      Delete
  2. Hey, Anon again - I forgot - in the "shit kit" there's also thick, overnight style sanitary pads - you know, in case of involuntary "leakage" :o Shit happens, you know?! People who can't talk about it don't know how lucky they are not to have to deal with it. The anxiety of not making it to the loo would have to be one of the worst things about my illness(es) - i mean collapsing/fainting, even vomiting in public is one thing but THE OTHER END!!! I must say, between you and me, I've "not made it" a few times - thankfully, only at home but there's a constant fear. With best wishes for a less "explosive" life for us all :)

    ReplyDelete
    Replies
    1. That's my fear too, the not making it :( I'll take a vomit any day over the other end. Having written this post it is amazing how many emails and messages I have received from others in the same position. There are a phenominal amount of people living with this every day, why aren't our doctors discussing it more frequently? Hear Hear a 'less explosive life" all round.

      Delete
  3. If I lived a little closer dear Michelle, I would feel the need to hit many public restrooms to scrawl "Ruprecht Sucks" gangland style, just to give you something else to think about. Maybe I'll have to place an ad in local paper (news, not loo) to round up some assistance with that...

    ReplyDelete
    Replies
    1. Hey, we could start a "Ruprecht Sucks" movement! 'Movement', bwahahahahaha I am so gangsta.

      Delete
  4. I too carry TP in my car. I will not hesitate to poop in the trees. You gotta do what you got to do. Hey I'm glad you RA open about it. This our life. Glad you talk about it. Your blog makes me smile. I hope your bum settles down. Hugs!

    ReplyDelete
    Replies
    1. I must admit I did think of you when I was writing this, but in a misery loves company way, not the weird way. I've done the tree thing too, just where I live there are few places to pull over (very windy steep mountain roads). We do need to be more open about it, that way we're not all sitting at home thinking we are all alone in this. xx

      Delete
  5. Sorry your bum is being a pain. Hugs. I too carry TP. I won't hesitate to poop in the trees. You got to do what you got to do. Your blog always makes me smile.

    ReplyDelete
  6. Oh dear Michelle, words just don't describe properly how I wish all of this would just magically GO AWAY for you. You must be beyond exhaustion. My heart goes out to you.

    ReplyDelete
    Replies
    1. Thanks Achelois. I wish for all of us our respective issues would all just disappear. Being sick in whatever form is exhausting mentally and physically xx

      Delete
  7. Cara Colacchio6 July 2012 at 11:49

    I have spare clothes & a camper potty in the car for my little POTSy!

    ReplyDelete
    Replies
    1. Camper potty, now there's a good idea :)

      Delete
  8. haha, this post came at the perfect time for me!
    Tonight, i got back to the hotel (am I the only one that hates hotels? everyone looks at me like i'm a drug dealer when i come in carrying bags of medical supplies, and the airport security staff went through ALL my stuff and patted me down twice! I feel so wierd not having all my stuff where it belongs, and not having the routine i'm used to) so anyway, i spent an hour of that night in the loo. I felt so bad since it was my brother's birthday and i was sick, but your post made me feel a little better. good to know i'm not the only one!
    P.S I made my own pair of sparkle shoes before I left. they are currently at home drying. they look great!

    ReplyDelete
    Replies
    1. YAY on the sparkly shoes, not so yay on the night in the loo. It's hard when you have an event on and your body doesn't want to cooperate. I try to be gentle on myself as we really don't have any control over it, but it is hard. (hugs)

      Delete
  9. I'm sorry Ruprecht is acting up but your post was hilariously written so while I'm sorry you're ill, I was cracking up. And it'd do no good to give the loo people laxettes and setting them loose in a forest of locked toilets, those guys have the keys to the throne room! ;p

    I hope you get to feeling somewhat better soon! :(

    ReplyDelete
    Replies
    1. Damn, I forgot about the key thing. I'll have to refine my plan. PS it's okay to laugh, poo and farts are always funny. ;)

      Delete
  10. Hi

    Just wanted to pop by and let you know that while I was sitting on the loo last night with my head in a bucket on my lap what I was thinking about was you. Not sure if that's too weird! It gave me great comfort though after having read this post a few days earlier, that while my insides were paying me a revisit through every available orifice that I was not alone in this. Absolutely wish you weren't going through it too, but it was comforting all the same knowing I had a "shit sister" out there who understood. Hope you're starting to feel better.

    ReplyDelete
    Replies
    1. We "shit sisters" have to stick together, Belinda. I'm weird enough to be flattered that your exploding body made you think of me, actually reading that made me snort laugh which can be dangerous at the moment ;) As horrid as it all is it is nice to know you're not alone, not that you'd wish anyone else to go through it all. xx

      Delete
  11. My dear gal, you have my complete and total understanding on this front. I juggle multiple gastrointestinal conditions, and am kept at home more often than for any other medical reason due to the fact that there are just so many, many (many....) days when I'm in the loo from sun up until sun down.

    It can be so incredibly draining and make you feel so powerless, but then you just have to cling to the hope that a good day (or even good hour) will come along and you'll be able to (quickly!) dart out and enjoy the world beyond the porcelain throne room for a tiny spell.

    ♥ Jessica

    ReplyDelete
    Replies
    1. I'm sorry to hear you're in the same boat, Jessica. So many of us are dealing with the same issue, but it truly is one of those invisible aspects of illness that those outside our lives have no idea we live with or how limiting it can be. You're right, it is draining and does make you feel powerless sometimes. I'm trying not to let it get to me and to fully embrace those good hours. They are so precious when they do come around. <3

      Delete

All who are lovely enough to comment should be showered with cup cakes, glitter and macarons. I promise to use my spoon bending mind powers to try and get that happening for all who are lovely enough to share their words. Those who go the extra step to share posts should really get a free unicorn. Or at least the gift of finding the shortest and quickest line at the supermarket on a regular basis. xx