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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 12 September 2013

what do you do when your friends don't understand?

So what do you do when your friends just don't understand? When they think you're just feeling sorry for yourself, exaggerating the severity of this thing, dramatising the situation? They're too busy; they don't return your calls; they don't want to put themselves out for you - why should they?

One thing about having Interstitial Cystitis is that it has affected all my friendships, either positively or negatively. It has either brought people closer, or pushed them away. It has - at different points - been interesting, consoling, and upsetting to observe this process.

Today a friend I love was texting me saying how happy and busy she is and that she didn't know when she would have time to meet up if I couldn't come to visit her. While I was happy for her good luck and fortune, there was a part of me screaming 'but what about me??' I'm not sure she understood how hard it would be for me to travel to see her. It's about 30 to 40 minutes bumpy drive, so would have to stop at least twice to pee, and I would be in constant pain while there, and then I would have the journey home. I would do it if there was no other option, but there are other options, and I was sad that me and my kids didn't seem to be a priority anymore. I miss her, a lot.

I don't think people understand this thing at all. It's not like ME, which I've had in the past and still suffer from up to a point. I know ME is horrific. But I'm not just woozy, aching, tired all the time - I mean, I AM tired all the time, but that's because I'm up most nights on the toilet except for if I take a pill to knock me out which then makes me tired all the next day anyway.

In addition to chronic exhaustion, I have specific, intense, burning pain pretty much all the time. If I don't take my painkillers I literally cannot move very far, only to a hot bath or the sofa with hot water bottles/ice packs to hand. I am on the toilet, at best, once an hour. At worst, every fifteen minutes. It hurts so much if I'm stuck in traffic; it can make me cry, trying to hide from the children how much bladder pain I am in. This is not how you expect your life to be at 35.

How the hell do you explain that to good friends who have become distant? Do you send a mega long text message, which ends up full of apparent or real self-pity? Do you write a letter, all about yourself? Do you post links to random websites about IC???

I end up just throwing my hands up in despair. And leaving it to the fates. Those people who want to stick around, will stick around.

When I was really ill last autumn, I pushed everyone away. One loyal friend refused to be pushed, and would turn up anyway, even when I weighed 7 stone and was hardly speaking. Several loyal friends held the space and just waited patiently till I was back on my feet. But some people who I really counted as close friends have either completely disappeared (perhaps they wanted to anyway, and this was a good pretext?) or backed off so completely that they may as well have gone.

It is hard, the way that some people just can't 'do' illness. For me, it has never been a problem. I'm good when other people are ill, except for when it is contagious, which I find more difficult (it's an issue in a big area of my life, but more on that another time). I like helping out and being useful and feeling like I'm doing good stuff for my friends. I don't get frustrated when people feel sorry for themselves. I understand it. I mean, if you're in constant pain or discomfort, or you've just had an operation, or your quality of life has suddenly diminished from pretty good to bloody awful, you're sometimes going to get pangs of 'why me?', unless you're some kind of saint. I don't mind giving, and I don't mind being around ill or dying people.

I guess we are all different. Some people just can't, or don't want to, handle it. And that is ok - it has to be their free choice. I just miss the people I love who were in my life a year ago who are not now. A few close friends, I really miss. I'm not sure they will ever be coming back, for various reasons. But people move on. Some are here for a reason, some for a season, and all that.

I am happy that some unexpected people have got closer to me during this past year, and that my life has become simpler. The friendships I now may be fewer, but they are genuine, and real, and invaluable.

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