Lists are cool!

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Since a hospital stint in May left me feeling invigorated and inspired to make changes in my life (I know, hospital is kind of a weird place to get inspired), I have commenced an organisational frenzy in my house.

Now I have always been a big believer in the ‘to-do’ list – but I only really ever used it professionally in the office environment. After a couple of sessions with a professional I have had my eyes opened – lists are cool!

I am not good at slowing down. For those of you who don’t know I have a couple of pesty chronic medical conditions – Behcet’s Disease (or Syndrome) and Fibromyalgia. Both these illnesses stink and are the real pain the proverbial, often leaving me exhausted and needing bed rest for days on end. On good days I tend to overdo it – I am so excited that I have some energy that I go crazy with activities, which of course flares symptoms up again. ‘Pacing’ when you have a chronic medical condition is really important, but I often felt guilty ‘resting’ when I felt ok. Stupid I know. It is vital to build up some energy stores and to put them aside for a rainy day, or flarey day 🙂

So here is where the lists come in. As I respond to ‘to-do’s’ so well I schedule rests into my daily planner. If it’s in the planner it is ok! No guilt because it is there in black and white.

It is also important to have some empty spaces on that daily planner. It really is ok. You don’t need to fill up every hour of the day.

Now the other thing you may or may not know is that I am a writer by education and by trade. I have mostly worked in Public Service departments writing speeches and reports but have always tinkered away with little works of fiction and non-fiction on the side. I decreed that 2014 was going to be the year I concentrated on my creative writing – well hey, I’ve started a blog, that counts. As I cannot work at the moment due to my health I am studying a Masters of Literature and Writing via distance education. One subject this semester will hopefully not be too taxing, and I do enjoy the subject matter – Young Adult Fiction.

So what do lists have to do with this outpouring of information you ask?

Firstly – when I was discharged from hospital I made a list of all the things I would like to do with my life – frivolous or not. This was for my eyes only so it didn’t matter if it had ‘marry Johnny Depp’ on it.

Then I made a list of all the fabulous and exciting things I had already done and achieved. That turned out to be a great list and made me feel like I had achieved a lot and had some wonderful experiences. I highly recommend you start a ‘have done’ list – it just might surprise you.

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Dealing with trials of drugs and treatment options – Lyrica

I have recently started Lyrica and it has been a miracle drug for me in terms of pain management. I think I am one of the lucky ones as many people have side effects that make the drug intolerable.

Liveken - my chronic life journey

Over the last week or so I’ve been really struggling with the brain fog and fatigue. My doctor and I are trialing an increase in my Lyrica doses and so far I’ve seen little to no improvement in the pain levels (the reason for the Lyrica) and a massive increase in the brain fog/fatigue department.

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I feel almost like I’ve taken a 6 month leap backwards in my mental capabilities!

It’s really hard to explain what it’s like to be on this sort of drug. My mother-in-law told me about someone in her support group who recently started Lyrica and I really liked her description… you can start off feeling fine, almost good, so you go about your day as normal but at some point you realise that you feel as if you’re high on drugs, you are completely out of it and unable to do anything…

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Information and inspiration for the chronically ill

Interesting insight into one person’s experience with chronic illness/es. There is so much still unknown about auto-immune diseases and the terrible toll they take on the sufferer and their friends and families. It is very difficult being told “but you don’t look sick” when you feel like utter rubbish and have barely been able to get out of bed. Holistic treatments are very much coming to the forefront as conventional medicine fails sufferers of these awful auto-immune diseases. I suffer from Behcet’s Syndrome and also have associated fibromyalgia. I was misdiagnosed for nearly 20 years – often believing I was going crazy as I could not get a diagnosis. I have been on various immune-suppressants which have all been a failure. I am hoping there may be some other alternatives that can lower my inflammatory levels to a normal level and I have started taking ginger and tumeric in a tablet form (Pain Ease). The wonderful Spoon Theory http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/ is a great way to try to explain how an illness such as Behcet’s, Rheumatoid Arthritis, Lupus, Fibromyalgia or any other chronic disease that depletes you of energy, controls your activities.

Everything Matters: Beyond Meds

I added another tab for the navigation menu. Thought I’d call attention to it. This one is for folks living with chronic illnesses of all kinds. I was struck physically ill from the brain-injury and systemic insult incurred by long-term  and excessive (prescribed) psychiatric drug use  and the subsequent withdrawal from the drugs (iatrogenesis). Many of my symptoms are like that of all sorts of auto-immune and other long-term chronic illness. (CFS, fibromyalgia, etc) — because in fact the drugs exacerbate or encourage such manifestation.

These are articles about learning to cope with being seriously ill and also learning to heal from such illness.

This is general information and/or personal information that has been helpful to me and may or may not apply at all to any particular given individual with whatever illness you may be coping with.

The tab and the drop down menu will be permanently at the…

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