2015,  CP related,  furosemide,  lymphoedema,  Uncategorized

It’s Okay

For me blogging is an outlet. And it’s a pretty good one.  I’m generally very open in what I share about myself although I try and protect other people’s privacy.

I’ve been blogging for fifteen years and in that time how and what I share has changed.  I’ve been quiet on my blog lately because that seems to be going through another change. Not really a welcome change. I welcome comments and questions and responses to my blog – the majority of which come through twitter nowadays. That’s brilliant. But there are some people who seem to read a completely different story to what I’m writing – One time someone took a mention of a medication to mean I was really ill and sent an email they were coming round to look after me. Luckily I was able to stop them. I don’t want to stop people reading my blog but it’s stressful if stuff like that happens.

So I haven’t felt as comfortable blogging. Almost as though I’m losing my blog because it can no longer be my outlet. I hate that and I don’t want it to happen. And now I have a piece of news that previously I’d always have shared. I want to share it but before this happened I told a friend I thought it would happen. It’s not upsetting news but as we were sat having our drink in a crowded cafe they cried.

I was diagnosed with lymphoedema this week (NHS choices link). I’ve been describing it as a complication of my having CP but it’s more accurate to say it’s a complication of my being a wheelchair user. I just have the swelling.

I’ve had obvious oedema in my legs for years – even in the winter although it gets worse in the summer. And this year it seems to be a lot worse and several people have raised concerns to me and suggested I needed to see a doctor/get meds (it was my saying I thought I might need meds that upset my friend). I wasn’t that concerned because I pretty much knew that it was a wheelchair thing. But it was bad and it was getting stressful with all the reactions so I did go to the doctors.

She diagnosed it as lymphoedema and said that as it’s not life threatening and it doesn’t usually bother me there was no need to treat it if I didn’t want to. We talked about my options and at the moment I’m declining the referral to a specialist for various reasons. I am however having a month’s course of diuretics (40mg of furosemide daily). The dr isn’t sure it’ll work for it but said it’s worth a try. If it does work I’m going to have a second month of them. So far I think they are making a difference but it’s too soon to know for sure.

Having lymphoedema isn’t a good thing. But it’s also not a bad thing. I need people to understand that. I’ll probably have it to some extent for the rest of my life. That’s the luck of the draw when you’re in a wheelchair all the time. And that’s fine. I have meds, I have choices and I’m happy with how things are. It’s okay.

I’m going to tell you this. Dealing with it is probably easier for me than writing a blog about it.

3 Comments

  • Anna

    I’m a blogger too. Blogging is a source of creative expression for me as I am a verbal learner. There are things we just have to deal with.

  • Katherine

    I’ve only been blogging for the past three years, but in that time I can’t begin to express how much it’s helped me, and I love it. Thanks for the blog post, I’m here for you however I can be.

  • Rachel

    Good on you for keeping blogging. I have family that are like your friend and it drives me nuts lol. Just don’t need it that’s for sure!

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