Monday, 23 April 2012

Postural Orthostatic Tachycardia Syndrome

I'm sorry to say that this is my last post as part of the April A to Z Challenge. I really wanted to complete it all this year without missing any days but it's proved more difficult than I anticipated. I love the challenge and I love meeting new bloggers and finding new blogs to read, but circumstances have taken control.

Last year I was diagnosed with Postural Orthostatic Tachycardia Syndrome or POTS as it's known for short. POTS is an autonomic disorder which means that everything my body is supposed to do automatically, it doesn't always do. It's a secondary disorder to the Ehlers Danlos hypermobility, which means it's not likely to get any better. My body isn't particularly good at pumping the blood back up my body when I'm standing. Though it was only diagnosed last year, I have been living and dealing with the symptoms for the majority of my life. The main issue for me at the minute though is the lack of sleep. My body doesn't appear to be able to switch off. I'm literally living on two to four hours sleep a night.

I saw the cardiac clinic nurse today and we're changing some of my tablets to see if they help, but first I have to be weaned off the ones I'm on. This means that my sleep won't improve for at least another two weeks while I come off the tablets that aren't working.

I am being affected by this disorder quite badly at the minute, but in comparison to some sufferers, I live a full and "normal" life. Working full time in a busy job and having a life with my family. I won't give in to this, I will take what I need to so that I can keep functioning. I have dreams and aspirations and I won't let this disability define who I am, but I will discuss it occasionally because it's real and there's no harm in raising awareness for invisible disabilities. This isn't a soap box I'm standing on, but a bit of honesty for how things are right now.

So due to this lack of sleep and an unforeseen hectic work schedule, blogging every day is an impossibility. I have loved taking part for the first part of the month I managed and next year I will attempt to plan better and have the majority of posts written, but for now, I have to bow out. For those still going, have a great last week or so!

I will still keep blogging, just not to an every day schedule.

42 comments:

  1. Hi Rebecca - so sorry to hear you still aren't sleeping - that's so horrible. The A-Z is a huge challenge - just the reading and following, let alone the posts themselves. I'm full of admiration for your spirit and with determination like yours you will achieve whatever you want. Sending you a friendly, writerly hug x LindaK

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    1. Thank you Linda. I appreciate the support. I'm keeping my fingers crossed all will be resolved in the next week!

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  2. You were doing so great with the challenge, but you need to get the rest. We're all in this together, this dream we all have. Thank you for the great posts.

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    1. Thank you for that Mieke. I appreciate the comment. I enjoy the challenge. I will definitely be trying again next year!

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  3. Sorry to see you stepping down from the challenge, but your health comes first! Take care of yourself!

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    1. Thanks Kyra. It wasn't an easy decision mentally, but it did come easier when I didn't have the energy to sit down and do it after a work shift.

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  4. I hope your health improves. I, too, have an health issue that allows me to live a basically normal life, but there are problems from time to time that really make me wish I didn't have to deal with it at all. Good luck with everything!

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    1. Thanks Emily. I'm sorry you also have to go through times that aren't always straight forward. I hope they are few and far between for you. I'm hoping to have this sleep thing sorted in the next week or so. Fingers crossed!

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  5. I've found A-Z a huge challenge, and I haven't even been working full time. If you've got added health and sleep issues, then I'm impressed you've done so well. Take care! Looking forward to your next post.

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    1. Thanks Annalisa. I kept seeing your blog posts coming through my email, so I know you did incredibly well. Well done on completing!

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  6. Hi Rebecca!

    With hopes that your health will improve soon.

    Congratulations! You won the Louise Cusack giveaway of her book 1 from Shadow Through Time trilogy- Destiny of the Light- on Romance Reader!

    http://romancereader-riya.blogspot.com/

    Please contact Louise for the win!

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    1. I'm thrilled with the win! Thank you for the opportunity! I've been in touch with Louse. Thank you again x

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  7. Look after yourself and don't feel guilty about anything. Mums are notorious for that! Love Ange x

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    1. Thanks Ange. We do, do the guilt thing rather well don't we. I'm hoping things are going to start righting themselves in the next week or so. It's about time! x

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  8. Well done for getting as far as you have in the challenge! I too am doing an A-Z challenge but it is not an everyday one. I post 2-3 times a week - that is as much as I can manage and I do not have any serious health issues! Good luck and I hope you get sorted with your sleep problems.

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    1. Thanks Pat. How is your challenge going?

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  9. so sorry you are dealing with so much pain and problems--i hope and pray today finds you better

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    1. Thanks Lynn. The sleep issue is an ongoing one, but I change to new tablets this week, so I'm hoping it helps.

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  10. I'm sorry to hear this. YOu've done an awesome job on the challenge so far. I hope you find better days ahead.
    Nutschell
    www.thewritingnut.com

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    1. Thanks for the lovely comment Nutschell. I really appreciate that. I hated having to drop out. Keeping my fingers crossed for better days :)

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  11. You're an inspiration to us, struggling everyday with this. And kudos for make the best choice for you. A-Z is huge! It makes me tired too.

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    1. Thanks you Gwen. That comment is so lovely. It kind of turns in to a way of life rather than a struggle, if you know what I mean. I am looking forward to something working and making the way of life a bit easier! :)

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  12. Oh no!! I hope that they are able to get you on the right meds and you can start getting your sleep. It is understandable that blogging would bee too much right now!!

    Hope you get to feeling better soon!!

    Cheers, Jenn
    http://www.wine-n-chat.com

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    1. Thanks Jenn. I appreciate that. I'm starting the new meds tomorrow, so I should know fairly quickly if they work.

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  13. Hope you get your symptoms under control. So hard to find the right meds in the right combination that do not cause side effects.
    All my best,
    Natalie

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    1. Thanks Natalie. I'll find out within the next week if they are going to work. Fingers crossed!

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  14. Hello, Rebecca! I'm so sorry to hear about this. Sending prayers and positive energy your way! Wishing you good health and happy writing. :)

    Have a lovely weekend and happy A to Z!

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    1. Thank you Laura! I aprreciate that. I hope your challenge month went well!

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  15. Dropped by to wish you well, and hope things are improving for you, Rebecca. x

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    1. Thanks Glynis. It's a slow changeover in medications, but I should start to get some sleep in the next week now. :)

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  16. you did very well! and i got to meet you! praying for positive outcomes!

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    1. Thank you Tara! I'm glad you came by x

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  17. You've done really well to get as far as you did. I have really struggled with the daily posts, working and the boys and I don't have the added stress of ill health. Wishing you well and I hope the new tablets make a difference for you. Stopping by to say Hi from the A-Z Challenge www.theramblingpages.blogspot.co.uk

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    1. Thank you for your comments and stopping by. I will be stopping by the Rambling Pages later today :)

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  18. Well done, and don't feel guilty. Hope to catch up with you on twitter very soon.

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    1. Thanks Maria. Twitter has seen a bit more of me than the blog as I can access it from my phone as I lay down! :)

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  19. Good luck with your health. I think taking on the A-Z challenge is brave, so good job on that. Not finishing isn't as important as staying healthy.

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    1. Thank you Jessica. I'm sad that I had to drop out, but it's given me extra determination for next year!

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  20. I'm sorry you're going through a difficult time, and I hope the change in tablets will help you. Take care and feel better soon!! I really enjoyed your Challenge posts and I'm glad you participated. :)

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    1. Thanks Julie. I really enjoyed what I was capable of doing. Things should start improving health wise in a week or so. I will then be back to blogging a bit more regularly.

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  21. Just popping in to say hello. I wish you the very best!

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