Positive Blogging

Positive Blogging

I have been on many forums and blogs related to IC and similar conditions.  A lot of people are blogging through the bad times, seeking help when things are tough.  Sometimes they can make for depressing reading – people telling pretty harrowing stories of lives of pain.  Not that there is anything wrong with that, it is helpful for them and some of the discussions have taught me lots.  But I don’t want a blog like that.

I don’t want to talk about my lows.  Rather talk about positive day to day experiences, facing the chronic condition with humour.  A bit of patting myself on the back for overcoming challenges and keeping it up.  If that cheers someone up and makes them see that there is life with this little beast trying to spoil the party all the time then great.

That doesn’t mean I don’t have my down days.  I don’t want fellow sufferers reading it and thinking, she probably doesn’t have it bad.  She can’t have. (Not that this is a competition of how bad our symptoms are).  My urologist has described it as a severe case and severely interferes with day to day life.  I just don’t want to make that the focus of my blog.

I have a choice.  To lie down and let IC take me over.  NEVER. (Well, maybe I let myself have a little cry now and again and stay at home on the couch, with regular loo breaks obviously, reading a book or with some crochet). My choice is to get on with life and do the things that makes life worthwhile for me.  Always!! Some adjustments are required, some support needed (thanks husband, kids, friends and family), some grit and lateral thinking.  And a bit of honesty – with myself (which can be hard) and with everyone around me.

I want to share the positives, reinforce them for me, focus on that.  It has to help. Share your positives too and funny stories.  I feel a need for some toilet humour! Little observations that only people who need to use the loo as often as me would notice.  Like how annoying is it when you can’t find the end of those loo rolls in public loos that are enormous and you spend 10 minutes rolling the thing around with your finger tips getting attacked my the metal serrated edge meant for cutting the paper – worse than losing the end of the sellotape.

I also want to raise awareness and get people who are professionals in various fields to give information and comment on information flying around on the blogosphere.  Like lots of long term conditions that don’t currently have a cure, there is a lot on the web that gives out ‘cures’ or describes things that ‘worked’ for them that have not been assessed by any health professional.  But more about that in another post.

 

 

I am a registered Nutritionist with the AfN so it is safe to say I like my food.  I have another blog so do have a look.  IC means watching what you eat so maybe a bit of sharing of recipes could happen too.  I think another post on food is necessary.  Ooh the list is growing!!  So much to write about, so little time, so many loo visits in the way and I have a cub camp to organise for 2 weeks time…..yes camping with IC, yes I do think I am crazy.  Honest, cub camp is fun!!

French toilets – or the lack of them

French toilets – or the lack of them

Image result for toilettes publiques paris

Moving to France has been fun in many ways.  I love my local market and French markets generally, I love the boulangeries and the cheese is pretty good too.  I like the buildings and I like the challenge of learning another language.  It has been a thing that I am so happy that we did as a family and that I did in spite of the IC.

IC brought its challenges of course –  it meant I had to have a crash course in the way the French health care system worked which with only basic school girl french was interesting.  Thanks to some very helpful bi-lingual new friends I got it sorted.

But I have to say one thing that France is really not so great at.  That is the public loo!!  Seriously!  Many public loos in Paris are those push button, door opens, you lock it and then out you come whereupon it shuts itself up for 5 minutes to clean itself.  So if there is a queue it could take far too long for a person with IC to wait.  Or the are ‘hors service’ – out of order.  The ones in stations can be truly disgusting, they get blocked but people (sometimes the homeless who to be fair have no where else to go) still use them until they are so gross.  But it is not the job of the station staff to do anything about it so they can stay in that state for weeks.

Many loos have no toilet paper – like never have paper – everyone carries little packets of tissues in case the need to use a public toilet arises.  Some have no loo seats, even in nicer public loos.  There are many stations with no toilet at all and the RER trains have no toilets yet can have fairly long journey times.  If you jump off at a station there is no guarantee that you will find a loo easily.

In bigger train stations following the signs to the toilets can be a nightmare too.  There is sign pointing to toilets and then all signage disappears and no toilets appear.  Arrgghhh!!  Often you have to pay to use public toilets in bigger stations or shopping centres but generally those you have to part with 70c for are pleasant and clean with seats and paper!!

In the UK, I know where I can easily walk in and ask (or just use) the toilets.  In Paris I have absolute refusal and disdain.  And places that I would expect there to be a toilet there isn’t one like some multi floor large stores.

Add don’t stop at a French Service station on the autoroute at lunchtime!!  Everyone will have stopped for lunch, there will be no place to park and there will be the most horrific queue for the toilets.  When you finally get into the toilets there are only about 5 cubicles.  I have often walked into the mens (along with plenty other women) otherwise I would crumpled in pain!!  Once upon a time the autoroutes were so empty that the small service stations were perfectly adequate but now there needs a bit of expansion, especially in the toilet facilities!

One saving grace is that I have a very useful card, issued by the French Cystite Interstitielle charity, with my photo, an explanation of my condition and my urgent need for the use of a toilet and generally people are very helpful.  Without that card would be a challenge indeed.

So if you come to France, have plenty of loose change, a packet of tissues and consider contacting the Association Francaise de Cystite Interstielle before you come if you suffer from urgency.  You may have to pay to join and fill in a couple of forms, but I am sure they would be happy to arrange a card.  Always worth asking especially if you visit France regularly.  I get to use staff toilets in shops and train stations as well as in hotels and restaurants where I am not a customer.  People are generally helpful, sometimes you get a gallic shrug but you get to use the toilet!

The men among you may not find it so hard as there are a few of these around the place…

Image result for urinoire publiques paris