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This blog is about coping with the strains of chronic illness whilst bringing up two beautiful children; it's also about the stresses of bringing up two children on your own while suffering with a chronic ongoing health problem which is at times very severe.... you can look at it either way. It's about being a single mum; it's about raising awareness of Interstitial Cystitis; it's about helping me cope. Writing this blog is beginning to bring me back to who I really am, who I really always was, before the single motherhood took over full time, before the illness set in.... a writer. I've always written, from essays to stories to journalism. This is the first thing I've written in years. It's helping me regain my confidence. PLEASE DO LEAVE ME COMMENTS AFTER MY POSTS! I'd genuinely love to hear your views on my (sometimes controversial) opinions. Thank you for taking the time to read. It would be great if you could comment so I know that you've been here and what you think.

Thursday 9 October 2014

Elmiron failing, the lack of Jamie Oliver, Ebola, Jihadi terrorists and other cheerful musings....

Apologies to regular readers for being MIA. Apathy aside, it is down to three things: children, illness and Instagram.

Starting with the latter, I discovered it a few weeks ago and am hooked. Have met some brilliant people with other chronic illnesses who understand totally what I am going through even though their own pain is different. Am really pleasantly surprised by what a community there is on there and how much support I can give and receive. My name on there is cath_free if you want to find me. Have also met a few wankers but hey, they're everywhere, right?

Moving onto my beautiful kids, Pre-Pubescent Beauty has started secondary school and is suddenly seeming to be 11 going on 15. It's incredible how they grow up before your eyes. Her days are long and her eyelashes longer (I suspect she's nicked one of my mascaras) and she is often in a foul mood but then with growing maturity apologises for it ten minutes later. She looks increasingly beautiful and increasingly like I used to look when younger (if I can say that without sounding stupidly vain! Mostly now I look like death warmed up!). Blue Eyed Boy is today off school with a cold so enjoying listening to tapes (yes, I still have those things) in bed and watching CBBC under a blanket. He is in year 3 now and loving every element of school - friends, sport, work, his teacher, his classroom... - everything except school dinners. Every day it's the same. 'Can I have a packed lunch?'...

This moves on to the illness. I am not going to moan.... Well maybe a little. Was talking on Insta (ha! this is what my friend calls it) about the things we can no longer do with chronic illness. I said running around the park with the kids is one thing I miss most. When (if) we get to the park I sit on a bench, near the toilets, and watch them run on their own. Try to take a friend for them. And they're older, I suppose, but. But but but. 'Can I have a packed lunch?'. Well my darling boy before autumn 2012 and everything after, you could have had what you liked, as my energy was boundless and I would have made you 5 packed lunches a day had you needed them, but now the thought of doing this every morning on top of everything else is just one thing too many. I know this is impossible for you to understand and this makes me sad.

It also makes me sad that the bloody school can't provide a decent hot meal for them in the middle of the day, especially as for us it is free!! Instead am going to email the class mummies and hope some of them have the energy to campaign for better school meals. Jamie Oliver why hast thou forsaken us? Maybe I should invite him to my son's primary school. Can think of plenty of sexually frustrated 40+ women there who would tie themselves to lampposts and burn their bras for school meals to improve if he rocked up. Ah now, no need for that kind of cynicism, is there?

Anyway, thoughts of Jamie Oliver aside, it's been a pretty rocky time. It seems that the Elmiron is doing fuck all, which is a shame, as it is the last medication I can try before surgical interventions and things which fill me with 3am horror. Moreover, the Elmiron seems to be screwing with my white blood cells and also the diet I have been trying to adopt (alkaline, anti-inflammatory) has left me so anaemic that my GP said she was surprised I was still walking around and not strapped to a drip in the local hospital (never want to be an inpatient there again in my life.... but never say never). So my main aim is not to collapse in Waitrose, as I did last week, as I really might end up in hospital otherwise. Their system is so appalling that once you're there it takes weeks to get out, even if you are not ill, so in this state i'd be there for months! So am addressing the anaemia and waiting to see what they tell me to do about the Elmiron. My GP seemed pretty worried.

Am managing, just about. Some days better than others. Just don't tell me to be positive. I can actually manage to be quite stoic, just so long as people don't say 'it could be worse'.

Of course it bloody well could be worse. And it will be! Jihadi terrorists are about to invade us via Turkey and moving on up / release biological or chemical bombs in all our major cities/ convert us all to radical Islaam or cut our heads off.. and if they don't get us, Ebola probably will. It terrifies me. If I caught that, I would definitely die. As soon as it comes to England I am going to hole up in my house and hibernate. But the children will still have to go to school... The decision not to screen incoming people from affected countries at ports and airports seems to be about the most stupid decision that this stupid government has yet made. At least the Amerians have got something right.

7 comments:

  1. I love this post...I didnt go to the shop in the end, Dad towed up with something, leaving me with no reason to leave the house...dammit. Still got other posts to read, but this post has given me high expectations, the way you write them just amuses me :) As for the surgical route, try not to worry too much (it could be worse ;) ) .. seriously, put it out of your mind for now, and cross that bridge when you come to it, as Mum always says. What will be, will be, and in our case, there isnt often a lot we can do about it. Ive had all sorts of surgery on my bladder, and now have a stoma, so you know where you can find me if you need to talk. xxxx

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  2. Sorry to hear the Elmiron is causing problems for you )-: Loved your post - so true - I am thinking the exact same thing about Ebola right now argh. My children are the exact same as yours - they regal me with horror tales about what they get for school dinners! It seems to worse then when were at school! I ask them what they had "cheese sandwich" they say 99% of the time . Some days I make them packed lunch but as you say - it's just one more thing to do when in pain and constantly needing to pee )-: . Is the surgery your are scared of bladder removal ? there are quite a few forums online with some people who have had it done and can give support when you are having the 3 am worrying . Glad to see you back and hope things get better for you than they are now x x x

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  3. Hi Sophia and welcome to my blog :)

    Thanks so much for your comments. I do try to put things out of my mind but my mind whizzes around and I find it hard specially when in pain. I don't need to tell you about it!! I would be really interested to discuss the surgical options with you ; not on here but in private , via email perhaps? It is really nice to 'meet' you both here and on IG and I hope you continue to enjoy my blog as I'm enjoying reading yours!

    xx

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    1. Yeah no worries! Ill send you a DM with my email. I know exactly what you mean, pain literally sucks everything out of you, your energy and any shred of positivity that you were clinging on to! Thankfully, we always seem to come back fighting. I think this is the one positive of experiencing "spoonie life", you become grateful for the good days, appreciate the little things and always come back stronger eventually. xxxxxxxx

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  4. Hi sweetie 'anon' and fellow mummy warrior, thanks for your message, I know, packed lunches.. nightmare right?! I have decided to try to galvanise the school mums to campaign for better school dinners rather than cave in and do packed lunches... I barely manage the timing in the morning as it is, as we have to be out of the house by 8.Also at BEB's school you can't do it day by day, it has to be week by week... Anyway, glad someone out there can empathise!! The first stage is installations, which I haven't yet had; then some kind of bladder pacemaker thingy, and then yes ultimately removal, though that would be some way off. I go on ICN tho actually haven't been there for a while. and sometimes COB. Anywhere else in particular you would recommend? Good to hear from you and please keep reading. Hope things are okay with you xxx

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  5. Thank you so much for the laughs! Stumbled upon your blog on a terrible IC day. I wish I lived across the pond, your sense of humor is great! And if you don't mind I will use your terminology - sod off - the next time someone says to me 'it could be worse'. Cheers from another single mom that IC hasn't finished off, not yet anyway ;)

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  6. Hi Anon (Oct 21)

    So glad you have found my blog and enjoyed it. It is dark humour borne of desperation but nevertheless if I can make you smile then I must be doing something right!! Yes, 'sod off' or 'whatever' usually works quite well. As does utter silence. Or, 'perhaps you'd like to see a photo of the inside of my bladder, i'm sure I have got one in my bag somewhere' lol :) keep on keeping on, and keep reading xxx

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