ME/CFS & FM Association NSW

So, what are they all about? This is seems to boil down to advocacy, awareness and support. The group are a bunch of everyday volunteers, with ME/CFS &/or FM or they might also be a carer of someone with it. So, they get it. Real people trying to make real change and awareness in our state.

This group is in it's early days (relatively speaking). But are already have big goals and are ready to be a voice for the so many in our state who are struggling day in, day out with these diseases. They are keen to focus on instilling education (in particular with medical professionals and students), investigating self-management courses for sufferers, and awareness, awareness, awareness.

Winning with Oska Pulse

Now, the Oska Pulse is not a TENS machine, and as the TENS was the only sort of “electronic” type of device I had heard of, I was curious to see how this was different. The scientific me wanted to know. So, I thought I'd let Oska Wellness explain it for you...

"When cells are injured or have degenerated, they lose their electrical potential

and are no longer able to exchange ions, causing inflammation and pain.

Oska Pulse uses optimized PEMF to restore the electrical potential cells need

to receive nutrients and oxygen, which stimulates cellular regeneration—relieving

pain, and activating the body’s natural recovery process." 

Adaptations and Examinations

I have finished a semester at university. I made it to the end.

But then someone will ask about how many subjects I did, or about my full time load...and my inwardly my soul will crumble, and break just a bit more than a little. And with tears braced I will say quietly, "just one subject. I only did one subject." Before feeling compelled to justify the easing back into it, and what an achievement one subject has been. But those thoughts are often kept to myself, and that part of me, the feeling of achievement, and of success, falls away, and my achievement no longer feels worthy of celebrating.

From the very beginning I realised the mountain I was set to climb.

I had been training for it for months. Slowly trying to increase my cognitive activity. Moving from being unable to read a trashy novel to working up slowly and at time really painfully to reading academic writing. A short 15 minutes, then a rest, moving up to two 15 minutes, then two 20 minute blocks of reading a day. A rest in between. Forcing myself to read despite the headaches and the nausea that comes.

I thought I was in too deep the day I went to my orientation session for my course. Feeling as nervous as I had when I started my undergraduate fresh out of high school some so many many years ago. The couple of hours of the induction session left me feeling physically sick. How was I going to cope turning up to class every week, made worse so by it being in the evening!

I had to bite my shame and register for disability provisions at university.

I had to send an email to my lecturer exposing a bit of my tightly guarded secret...I have a chronic illness.

The first lecture I was too scared to walk out and take a break. Despite my watch giving me a silent alarm reminder. Too scared to draw attention to myself. It was bad enough that my class was on the third level, and the only lift I found looked like it was out of the dark ages and so walking the stairs (despite the consequences) seemed a much better option.

By the second week I managed to walk out mid seminar to get some fresh air. Using filling my water bottle as an "excuse" not that it was needed. I'd sit out on the balcony trying to mentally do some quick meditation or give my brain a rest...just enough to return back in and keep the nausea at bay.

I'd scrape through to the end of class, hoping and praying that I wouldn't need to put my brain into actual action and be called upon.

I'd drive home calling mum so that I'd have someone to talk to and keep me alert as I drove home.

Each week of study was carefully orchestrated and planned. From trying to stay on top of seminar material, reading some of the weekly readings, more reading on my assignment topic, and starting assignments painfully way way way ahead of time.

Assignment one was a killer. Trying to gauge whether I was on the right track, whether words could be formed in a somewhat academic form compared to my blogging style prose, way too long to dwell on the topic...yet, only able to complete a tiny bit each day. By the end, my brain was fried, our internet was fried (literally) and I was scraping by in cafes and the library. It was submitted, and then I crashed, barely able to make it to the following weeks seminar. I had pushed my body too far!

Yet, slowly I allowed the adaptations I required to be real. To allow my self to accept the help. With this came the confidence to say it how it is.

With this in mind as I looked at the looming end of semester, an exam and an assignment due in the same week. I bit the bullet and asked for an extension ahead of time. Pacing. Planning. The story of my life.

Then the week before the exam, I sat in our seminar in a fatigue mind fog. And I realised that for the exam the following week, I was going to have to utilise my special circumstances, and allow the adaptations to happen. Without this, how could I write, let alone think my way through an exam.

The semester was full of adaptations. It was filled with acceptance...well, a growing acceptance that is, and it was filled with joy. It was fuelled by the strength and grace of God!

There was an opportunity to actually get paid to give a lecture, there were new people to meet, things to learn (I suppose that is a good thing!), and time to dream big. Sometimes a little too big, but hey, we can slowly work on changing the world, one adaptation and examination at a time.

Does Fibro Soothe?

2017 and Me

If you want to follow this journey specifically you can jump over to Student of the Year.

The Chronic Life

What a MECFS Crash Really Feels Like

Well, what it felt like to me...yesterday.

I can do this.

35 Words of Some Sort of Wisdom Gleaned from Some 35 Years of Life

1. Peanut butter toast is the ultimate comfort food. Especially when you have a migraine.

2. Reheating your buttered peanut butter toast in the toaster is probably not recommended when your brothers are allergic to peanuts.

3. Don't make any decisions such as point 2 whilst attempting to function with a migraine. In short...don't do anything!

4. The worse you absolutely feel, the more make up you have slathered on your face the most comments on how well you look you will get. One of those inversely paradoxes of a scientific theory.

5. The best 25 words or less competition entries can be written late at night when absolutely shattered. Brilliant poetry can flow.

6. Don't write text messages or blog posts when in above frame of mind...nobody wants to read that verbal garbage.

7. Patterns (sewing, crochet etc) are not designed to be followed...mostly. They just invoke too much stress and perfectionism.

8. Recipes likewise.

9. Measurements in baking are a rough estimate only. Except making Macarons...but I blame the fact mine always fail on our humidity. Well that's what the Parisian chef in the cooking class reckons about the Australian climate. So I am holding up that.

10. There is no such thing as a baking fail. A whole lot of "caramelisation" and "added crunch" is entirely acceptable. Tell everyone you have made a "sunken banana cake" with confidence and everyone will be excited by this awesome use of extra cream cheese frosting.

11. Baking may fail, though, if you do not secure it in the car carefully for transportation. Cleaning pavlova off the backseat of the car is secondly bad only to turning up with an empty tray because the supermarket was closed resulting in no dessert! End of the world.

12. Measure twice in projects, cut once....yes. This is advisable...otherwise you spend hours coming up with creative solutions...and turning it into new projects.

13. Faith doesn't make pain disappear. Faith gives meaning amongst the pain.

14. Smelly things stink...and don't get any more beautiful the more beneficial the aromatherapy properties are. Flowers on the other hand...

15. Always buy yourself flowers. Regularly. Don't wait for someone else to give you them.

16. If you are broke, and can't justify flowers, go foraging. Your neighbour isn't going to notice the missing branch/plant/best roses off their bush...surely.

17. Secateurs are entirely acceptable to take when you go walking, late at night, through the streets of your suburbs.

18. Bending down to "tie" your shoelace is a handy way to snatch succulent cuttings from unsuspecting neighbour's.

19. Succulents are most definitely not unkillable!

20. Be prepared. Think ahead people. Carry your metaphorical pocket knife with you at all times. Know your future, know Christ.

21. Fairy lights make everything pretty.

22. Slow cookers are the best for hospitality and parties. The best.

23. Comparison sucks. Comparison to others, comparison within your self, comparison to those with the same disease. Take tired..there are different kinds of tired...they are not worth comparing they can be worlds apart from each other in meaning.

24. Netflix is your friend.

25. Dark chocolate is your friend.

26. Sunset and water views are good for the soul. The one who created them abundantly more so!

27. You only realise how much you like running until you can no longer run...maybe it's like a withdrawal to a drug! All those good endorphin's and all.

28. Be bold. Teal was my favourite colour before it became everyone's favourite colour and trendy. So now when it goes out of fashion...it will really go out of fashion for me!! Until it has been long enough and then I will be cool before the cool kids again.

29. Coffee. How come it took till my thirties to officially meet you?

30. Turning thirty is good. Not just for the coffee. Much better than your twenties. Mine has been...apart from that whole major chronic illness factor.

31. Play to win. Go hard! Be a (mostly) good sport. Be smart. Think outside the box, or the court, or the cards...But play to win!

32.Words hurt. So does being hit in the face close range by a ball in indoor soccer, and phantom appendix pain, and pimples on your nostrils. It's all relative, and interpretive.

33. You know your body. Trust you. Don't feel dragged down by doctors or others. Trust what you know to be true with your body. I would say trust God more than yourself too...He is the one that knows you intimately!

34. If you are ever wondering "should I keep this?". The answer is always yes, because it may be useful. I don't know if it is my inner infants teacher, crafter or hoarder genetics speaking but yes it will one day be useful!

35. Lists are great! Especially a good to do list. Especially a list you can cross things off. And a list that you get to the end of!