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Friday 12 February 2016

THE PROBLEM WITH BLOGGING

I have to admit I'm having a moment. When I started blogging it was for two reasons. Firstly I wanted a way to spread the word about the condition called Cowden's syndrome and secondly I needed a healthy way to de- stress. I could have taken up drinking but as I am a very cheap drunk that would have been pointless. So writing it was.

But things have changed and I'm not sure how exactly. All I know is that I'm no longer getting the urge to write it down. My "go to" form of therapy is no longer working and that saddens me because for two and a half years this blog has been my salvation. But of late, writing and even talking about our health issues has become tiresome. And I suppose it's because there is always something wrong and because I'm tired of people only associating this family with poor health. We are so much more than this illness.

The other issue which constantly troubles me is my inability to write things down exactly as they happen.  You can't bitch or moan about medical personnel for fear of litigation. You can't rant or rave about services provided for fear of it getting back. And...you can't tell a story as it exactly happened for fear of being labelled as negative or being told to be positive.

So, my question is what's the point? Why not just keep a diary and write down WITH A PEN the whole truth and nothing but the truth. Bitch and moan to the pages in private. No litigation because no one will see anything, and the " positive thinkers" might go curl up and die somewhere, when they have nothing to feed off.

The reason I continue is because " it is what it is". Even if sometimes I can't write the whole story, it still paints a vivid picture of what life with a rare disease is like. And in my small way I see that as educating the masses, or at least those who read my blog. Maybe it might lead to patience, tolerance, understanding. Who knows?

Living with a rare disease is rough. Last week I accompanied my daughter to a check up. The results were great. The doctor even said some magical words which made me cry, " we are winning". Today a week later she had an incident which resulted in a short hospital stay and her father and I driving like mad to be with her. This is how it is with a chronic condition - one step forward, two steps back.

                                    February 29 is Rare Diseases Day world wide.

As Rare Diseases Day once more approaches, I want to take my hat off to the following people who make coping with my rare condition a bit easier. This list is in no way conclusive.

  • A spouse who holds my head above water.
  • A daughter who hugs.
  • The support crew ( like my sister) who drop everything to help.
  • The doctors who ring you with results because they know you're anxious.
  • Nursing staff who always have a kind word and time to talk.
  • Pathology staff who insert canulas first time.
  • MRI staff who always have a blanket ready.
  • A patient GP who always does his or her best to learn more about your condition.
  • Kitchen staff who sneak you another biscuit.
  • Receptionists with a friendly tone to their voice
  • Employers who understand and send flowers.
  • A mother who makes soup and other food because if you eat you'll get better

Till next time...xxx
ST

17 comments:

  1. If writing makes you happy, then don't ever stop on anyone's account. Also, I think it is great to get awareness out there about subjects you are passionate about. :)

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    1. Yes thank you but easier said than done with certain topics and when writing about certain people. Thanks for commenting.

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  2. You have a talent for writing. I have a difficult time.

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  3. Oh, Don't stop blogging. Your story needs to be heard. It needs to be spread. My life has changed to much since I found the world of blogging. I have found a new home, a new group of friends, and Life if so much better.

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    1. I'm not stopping blogging. As I said my current feelings still paint a picture of the condition I live with.

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  4. I agree with Sandy Mangis keep going! You have a story to tell and something that people should be aware of. I also think that blogging would be a great outlet for you especially the connections you make with other bloggers who become friends. Have a great weekend #FridayReflections

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  5. I enjoyed reading your thoughts on blogging - I think you should totally keep it up! The way I see it my blog is my blog and my outlet and I'm going to run it the way I want to, whether other people like it or not!

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    1. Great attitude but sometimes hard to put into practice when dealing with medical issues. I'm not quitting anyway.

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  6. I'm visiting your blog for the first time, and I don't have an answer. I think it's awesome that you're trying to spread awareness about your condition, and I can see that it might become tiresome. Your words are beautiful and it's a lovely space. I imagine you've made some great connections too, but it's always nice to step away from the space for a while to see if you miss it, or even if you want to change it.Anyway, kudos to you for sharing your story with the world. You're finding light in dark places and that does make a difference I think.

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    1. Possibly some of the nicest words ever left on any of my posts. Thank you for taking the time to understand xxx

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  7. So sorry to hear you are having a tough time, blogging is really a great way to promote topics you are passionate about and you are certainly doing a wonderful job spreading awareness. Maybe try taking a break from the blog for a few days/weeks and you might feel re-energized to come back to it and do it with more passion. Hope you are able to overcome this small hurdle soon :)
    xx, Kusum | www.sveeteskapes.com

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    1. Thanks so much for taking the time to leave me a comment.

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  8. I'm sorry you're having a hard time with it. I hope it'll feel better for you soon!

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  9. I started blogging to de-stress too. I am so sorry for what you are going through, but honest accounts, even negative ones help others. Other parents want to know! You are doing a great job spreading the word.

    Thanks for linking up at the #bloggersspotlight

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  10. I missed this post from Fridays Reflections last week Suzi - and I wanted to add my voice to say that you should keep blogging for as long as it gives you pleasure or a place to offload. Sometimes it's good to take a break or to go in a different direction, but blogging has been a great outlet for you (and for me) so hang in there and wait til your muse strikes again :)

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