One of those days or weeks…

Published August 17, 2014 by tenderleaf

So as many who are new  my blog may have come to realise I blog quite a bit… I am a chatterbox I spew forth mumblings and ramblings that are on my mind most frequently my friends who have been following me for a while are probably used the the rubbish that can dribble forth but I love them for sticking with me. I figure it’s time to delve a little deeper into me.. let people know maybe a little why I am the way I am.

Ok so the past few weeks have been a bit hard I have had an ear infection that wouldn’t quit 2 lots of anti-biotics for that and straight after a chest infection and another bout of anti-biotics no fun at all. Of course this brings a worry as I am about to embark on a 12 hour flight and I am not even sure if it has gone (the ear infection.)  Unfortunately I have Sjögren’s syndrome If anyone is interested here is a link to a site http://www.sjogrens.org/  it is an auto immune disease that is systemic, it affects my eyes my mouth my nose my joints (arthritis) gives fatigue amongst other things, for the most part I can keep the pain under control with pain meds but when I get a flare it becomes near impossible, the fatigue on it’s own is a killer and alot of the time many people do not understand. There is no cure it is someting I have to manage for life and to be honest sometimes it gets me down. Being on anti-biotics has caused a flare lowering my already screwed up immune system further.  Its not just pain that gets you down though it is constant sinus infections because of the lack of mucas protecting the nasal passages, not being able to eat what i want because of the lack of saliva the ever present feel of grit in my eyes arrrgghh. So what do I do to take my mind off all these things I play computer games albeit for short amounts of time when my fingers are swollen and sore with arthritis, I read… lots and I write usually about games or whatever else pops into my head, sometimes more than often than other times.  Stress of course makes it worse but not really much I can do about that so it becomes part and parcel of my life. Now you may think I am complaining but I am not, I have a beautiful daughter although a challenge I wouldn’t change her for the world, I just wish people were more understanding of autism and invisible disabilities, I also have a wonderful husband who despite his difficulties has stuck by me through mine. 

depression awareness

So I would like to add some links so people can become more aware of things that are silent and unknown what people do struggle with on a daily basis, especially as it is Depression awareness week… well according to facebook. So if you get a moment please check it out.

http://www.autism.org.uk/

http://www.sjogrens.org/

http://www.mind.org.uk/information-support/types-of-mental-health-problems/borderline-personality-disorder/#.U_CEEvldXwo

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2 comments on “One of those days or weeks…

  • We are in similar situations so I understand to some extent. Chronic pain, chronic fatigue, suppressed immune system – even down to having to use eye drops to stop my eyes feeling gritty etc ….. It took a few different types till I found one that suited me and THEN it was the actual remembering to use the drops often enough to prevent the eyes becoming scratched on the corneas again 🙂 …. If you ever need to explain to a ‘healthy’ person how much control this can have on your life despite your best intentions, ‘The Spoon Theory’ is always a good one. It can be difficult can’t it because there often isn’t a ‘visual aid’ to prompt awareness. Even when I use my stick, I’ve had folks think it was just a prop lol (why?????) …… I don’t know if you’ll find self massage of the lymphatic system useful when sinus/ear problems flare? 🙂

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