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!!