What do I want this blog to be?

What do I want this blog to be?

I started this blog a long time ago and I didn’t really know the answer to that question.  It was when I was first diagnosed and was trying to get my head around the whole thing.  The blog kind of died a death.  However, had I kept it going, it would have been a blog asking a lot of questions, a lot of me sharing my downs and symptoms, seeking support, venting.  An electronic journal I suppose.

Six or seven years on, I have learnt a lot about myself, the condition and ways of dealing with it.  I have had more experience blog writing with my nutrition blog and got a little more adventurous with social media.  I have seen some really great blogs and social media folk using digital media well and others that peddle information that is harmful or unhelpful.  So with all that experience plus the day to day dealing with life with a long term condition, I want to have another crack at this blog.

Rather than being a place for sharing my journey which was the reason I started, I want it to be more dynamic and helpful than that.   I want it to be a place of interesting articles, useful real life tips, stories (with humour preferably – please share).  Pointers to helpful websites that are grounded in science or reality.

I am not promising a cure.  I am not saying do what I do and life will be perfect.  This is not a ‘look at my weird diet and strict lifestyle, now I am cured and you can be too!’.  There is too much of that around.  I want it to be real.  I don’t want people to come to this blog and set off on some crazy quest that leaves them feeling inadequate and unhappy because they are not feeling any better.  But worse than that, feeling that somehow they are inadequate as well as ill because this person on this blog says that what they are doing will work  – so if it isn’t working then perhaps they are not sacrificing enough for the pursuit of healing.  This will not be a place for extreme remedies that may do more harm than good – there is a rant brewing on that topic!!

As a Registered Nutritionist with the AfN and as there is a link between food and symptoms, I want there to be stuff on food and some recipes here.  No extreme diet.  There is some agreed foods that seem to aggravate IC and some foods that are pretty safe.  Everyone is different.  We mustn’t lose sight of the importance of eating well whilst trying to minimise food related symptoms.  Eating well not only means feeding your body with a good balance of nutrients by eating more of the foods we don’t generally eat enough of and watching out for those things we know we tend to have too much of.  The usual boring messages.  But eating well is also to enjoy food.  When foods have to disappear from your diet or be reduced then eating well gets a bit harder.  It can distort our relationship with food totally.  Bad thing!!  More on that later.

I also want to have a place to say thank you to nice people – shops and restaurants that say ‘yes of course you can use the toilets’ and not ‘customers only, don’t care what your reasons are’.  The nice things friends and family do and say that really help.

Raising awareness is important.  People often have no idea this condition exists.  They may have an inkling of what it might be like if they have had a bout of cystitis. And, no cranberry juice won’t help with IC!!  As a result, people don’t know how to help or understand why you might be asking for a favour, don’t understand why some everyday things are a challenge.  How people react when you are having a bad day makes a big difference on how easy it is to cope with the symptoms.  Unfortunately, people are reluctant to talk about bladders and toilets and stuff – with perhaps the exception of little boys who find any talk of wees and poos all rather funny!!

How does that sound?  To me it seems I might have bitten off more than I can chew.  I hope any readers will enjoy.  I don’t promise a cure, but I hope what I have to say is helpful even it is just a soothing ‘you are not alone’ balm, or maybe a suggestion of a new way to look at a problem.  Even if you just laugh at the nutty things I attempt to do with a broken bladder, (run a cub camp for example – why would any sane person with a perfectly functioning body choose to do that let alone someone with IC).

 

I would love to get some guest blogs from urologists, well qualified health care professionals and complementary therapists (members of Health Care Professional Council or similar respected bodies please).  I won’t be including anything that I think is promising too much for the evidence that is available, that is likely to break the bank for little gain or has negative effects that outweigh any promise of benefit.  And any stories from the research world that I can share in lay persons language.  Maybe there are new treatments or potential cures out there that can encourage us that maybe one day people won’t have to deal with IC.

So if you want to share, contribute in any way please make a comment or drop me a message.  I plan to set up a twitter account – should I do a Facebook page too?  Am I getting ahead of myself?

Advertisements
IC = Interstitial Cystitis

IC = Interstitial Cystitis

I was diagnosed with interstitial cystitis in October 2012. For over a year, every bout of cystitis came with a negative test for infection. Next the possibility that I had overactive bladder but after the medication didn’t work I was sent off for a rigid cytoscopy and hydrodistention. Diagnosis – interstitial cystitis (which is a nightmare to type so from here on in it will be IC before I break the delete key!)

Anybody who has had a bout of bacterial cystitis will know how painful and how inconvenient it can be. With IC there is no infection, the bladder is inflamed and at risk of ulcers as the bladder’s protective lining is broken.

Urine is an irritating fluid which can be acidic and contain compounds that are irrtants, including break down products from metabolising the food we eat. Therefore, there are a number of foods that are consistently reported to be problematic and loads of others with big question marks by them.  I have limited some foods to see if I can manage my symptoms through changing what I eat – I have an advantage as a nutritionist.

It is important to say that this is reporting of my own situation and not specific professional advice for fellow sufferers. What works for me will not work for someone else. I will be guided by my professional knowledge – keeping my diet balanced and ensure that I am eating well (not just nutritionally but also enjoying my food and that cooking and eating fit in with my family life). I hope that fellow sufferers might be able to use the information I find and my strategies for working out what affects me useful.

I also want to use the blog to keep useful or interesting web-links, investigate other treatments and consider other strategies that may help manage the condition which has become quite challenging, making simple things like travel stressful (for someone that has travelled around the world twice with her life in a backpack this is quite a trauma!!)

I found it quite hard to discuss everything with my consultant so I hope that others will be helped to better able to ask the right questions and make the most of their care team.