Make it, Bake it, Fake it: chronic illness

The State of ME/CFS & FM in our State (NSW)

October 15, 2017

ME/CFS & FM Association NSW

Not long ago I had the pleasure of being invited to join the NSW ME/CFS & FM Association committee meeting one Saturday and to find out a bit more in depth about what's happening in our state.

Now I knew very little about this group before rocking up. I've always wanted to get to their AGM and find out more. But have been prevented by the obvious health and distance factors. I had met members of the group through a couple of meet ups, and I had communicated online...but that was my extent.

I knew so little that I am not even a member of the association...which when I thought about there was no reason for not being one. I seriously had just not got around to doing it. Life gets that way!

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.

To start with, why don't you take a moment to check out their website... MECFS & FM Association NSW What can you find on here...there are details on support group meetings across the state so that you can connect personally or online with those near by. You can find fact sheets to print out and leave not so subtly placed in the path of those around you. You can find articles and research. Hey, you can even find an article of mine on there! (They must have good taste!)

Connecting with others can also happen through the MECFS & FM Support Facebook Page which I have found super helpful for asking questions and sharing my past experiences and ideas with others. Sometimes I find the national and even worldwide web of information overload so confronting, and so it is nice to be able to connect on people with a local focus. To be able to chat through the ins and outs of living with these diseases here in NSW.

Somedays, I wish people could take just a small glimpse into my life with this disease. They may see me up and about, but that is often masking the depth of the pain, and the implications of living for years with a disease without a cure. I don't know about you, but I want to further the advocacy of FM & ME/CFS in my state and Australia and the world! I want people to be aware. I want to be able to advocate (as much as I can) for all those battling alongside me. So this is where connecting with a local association such as these guys makes us all a little stronger in this battle.

The group has been working together and with others for the big event coming up with the Sydney screening of the movie Unrest THIS COMING WEEK. (See Facebook for screenings that are being (or have been) held in Newcastle and the Blue Mountains).

Be warned, bring your tissues. This one will get you. And so it should. There is nothing about this disease which shouldn't. Go check out the movie trailer. Unrest Trailer. Have a watch. I could write bits (actually lots) about this...but the trailer says it better. Go check it out. Now.

If you are free and able to get to The Entertainment Quarter this Saturday, or the following Monday evening, tickets can be purchased here.

You may have even seen the producer/creator Jen Brea's TED talk not long ago...I highly recommend it.

Coming up with the Association is the AGM...you may want to put in your diary

The ME/CFS & FM Association NSW Inc. Annual General Meeting (AGM)

Details: TBA (please ignore the date I previously put...brain fog moment!)

In the process of writing this piece, I went online and completed my application to join the Association... that simple! $5 joining fee and $5 yearly membership. Seeing as I compare my finances to coffee...2 coffees is all it will cost you!

If you have ME/CFS or FM, or know someone who does (I am presuming you do if you are reading this!)...I encourage you to get involved. As simple as joining the conversation, and knowing what is going on in NSW.

Thank you to the committee members for what you are doing to raise awareness, support and education! Because really, think about how tricky it is to rustle up a committee for your school fete, or a local organisation that is filled with hundreds of healthy people...and how many people complain about doing that. Now think of the extra extent that a committee needs to go to when chronic illness is at the core. Yep. My hat goes off to you. So, a big thank you to the association committee members!!!

Have a look. Get involved. Join. Read. Watch. Have your say. Join the advocacy. Be supported. Connect with those who get it.

Hopefully, see you all at Unrest!

chronic fatigue syndrome

Adaptations and Examinations

July 19, 2017

Adaptations and Examinations

My soul is bursting with excitement. I want to shout it from the rooftops. I want people to know and hear, and share the excitement with me. I want people to understand the depth of this joy. Understand the sacrifice. Understand the achievement.

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.

2017

2017 and Me

February 27, 2017

chronic

The Chronic Life

January 17, 2017

Christmas

The Art of Crashing in Chronic Fatigue Syndrome

December 27, 2016

Christmas

To Go Out or Not To Go Out...That is the Chronic Illness HolidayQuestion

December 22, 2016

I want to do it. I want to go out. I want to just live.

This is particularly hard over the Australian Christmas summer period.

My memory goes into over drive as I remember lazy days hitting up the beach. Or going on obscure adventures to eat 'the best' fried chicken on the other side of the city. Or last minute New Year's Eve road trips up the coast stopping in at a roadside carnival, followed by seeing the new year in at a night club followed by sleeping on the beach and watching the sun come up on a new year.

Days of endless summer...well at least the week between Christmas and new year, where a majority of friends (sorry, apart from those serving us in health or policing or retail) get a break as the immediate world shuts down.

Yet, my body doesn't know what to do with itself these days. It yearns to be out there experiencing and living.

However, my internal alarm system is in overdrive. Don't do it. Don't waste the energy. Don't push your body through the torture. Don't do it.

Yet, life is for living. I can't stay cocooned in the foetal position in my bed forever, even though that is what my body wants, and that is what my body demands. Now, don't mishear me, I'm not about going against your body. Somedays you are stuck in bed. And there is nothing your body can do about it. And it sucks. But other days you can do a bit of stuff. And that is cool.

Yet, it's hard to figure out what you can do. How far can you push?

Life is for living...even Jesus says it... 'I have come that you could have life, and life to the full.' John 10:10.

What does my full life look like as a chronically ill individual? I feel that is a topic for another day.

What does a full life look like over the holiday period? Good question.

I feel there is a sliding scale...

A scale where you have to weigh up the event and how it will fulfill your desire for social interaction (let's call this social sanity) versus how it will affect you, your health and all the associated sickness side effects (and this shall be known as your sickness survival).

This holiday period. Where are you on the social sanity vs sickness survival scale?

Are you like me, weighing up the pros and cons of every event that you are considering missing out on? If you have a chronically ill friend do you realise the sickness survival implications that attending the event means to them. Could you modify the event to make it more accessible to them?

This scale is not exhaustive, and not conclusive for each event.

And really, sometimes, you just have to live and enjoy the celebration and deal with the chronic illness survival another day.

May your Christmas and holiday period be filled with an abundance of joy. And celebration of Life. XX

Aromatherapy

Why review the Organic Aromas Essential Oil Diffuser when I hate smelly things?

November 11, 2016

I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.

Why review the Organic Aromas Oil Diffuser when I hate smelly things?

Now, smelly things really annoy me. So, why review the Organic Aromas Raindrop Oil Diffuser?

Smelly and fragrant things...ergh!! Mandarin skins are the worst...to the point I don't eat mandarins even though I love them because of the smell left on my hands from peeling them. Or the pungent onslaught of fragrance leaking out of a Lush store all through the shopping centre...this is despite some of the Lush products being quite pleasant in and of themselves.

Maybe this dislike of pungent odours steeps from my migraine days when aromatic Indian curries were cooked metres from my bedroom where I lay in the dark, drugged up hoping the migraineous torture would end soon.
Or was it the very cheap 'perfume' in a children's makeup set that a 5 year old had brought in for classroom news, that's she sprayed on me and gave me a migraine within minutes?

Whatever it has been, fragrant things have not been my friend. Even more so since getting sick with MECFS.

So, why am I reviewing an aromatic diffuser? In particular the Organic Aromas one.

Good question.

I have heard lots about essential oils and their properties over the years. I have many friends who are into it, and use them to treat a range of ailments and aide in life. However, I have mostly been turned off by children overloaded with fragrances walking past triggering my sensory overload.

Recently, though, a friend gave me a few drops of a lavender blend and slowly I have been able to add a little to my Epsom salt baths and have found it quite pleasant.

So, when the opportunity to try out the Organics Aroma diffuser I thought why not!

Why not attempt to see if I could get my body and my sensory overload to adjust to aromatherapy.

Now, this diffuser was super easy to order, shipped quickly to Australia (no shipping costs), and looked really good. It easily fits in with my decor and doesn't look out of place. I ordered the Raindrop Diffuser in Black.

I was provided with two aromatherapy blends to try. Serenity and Passion.

To be honest, my first sniffs of both did have me reeling...as we know how I am with these things.

However, I figured I had better start with serenity as I probably needed as much help getting my serene on as possible.

I started it on the lowest setting and let it go. It was tolerable, yet quite a bit too strong for my liking. It was also competing with gluten free sourdough doughnuts being made by my flat mate at the time, so I don't think it really stood a chance.

As this is a pure oil diffuser the fragrance comes out strong, it is not distilled by water and doesn't leave water vapour etc... If you want to get your science on about the technicalities of it (quite interesting for the scientific brain in me) click here. So my quest to see if I could start with an even lower output began...I wondered about maybe with a carrier oil.

I began some research and the Organic Aromas website was very helpful with my questions. I found the information I needed under the Essential Oils Safety page, in the Pregnancy Section. I learnt that mixing with a carrier oil was not the thing to do (clogs vapouriser) and instead to add less oil, and only have it on for short periods of time. This seems to be a much better approach for me. I can now tolerate small amounts for short periods (having the diffuser on for 5-10 minutes). Surely, we can only go up from here.

I hit a few snags over the past month or two as I have been suffering from really bad nausea and haven't wanted to turn it on at all. It only just occurred to me that maybe I need to investigate which is a good oil for nausea. Peppermint maybe??

I am still yet to try the Passion Blend I was provided with. Hmmm....unfortunately, as a single woman, living in a household of single women, there is not a big call for passion...except maybe in the Italian pasta making sense...apart from the fact three of us are glutards...and pasta making is not on our passion scale. With zucchini 'zoodles' just not evoking the same response. So, the closest I could relate to on the passion scale was chocolate...and we are most definitely passionate connoisseurs of fine dark chocolate. However, I am looking forward to building up to trying it one day in the future.

All in all, have I been cured of my dislike of smelly things? No. But I am definitely building up a better tolerance, and the Organic Aromas Raindrop diffuser has been an excellent starting point on this journey.

Will I keep using it? Yes, I feel I will. I have noticed that I quite often walk past it in the living room and switch it on for 10 minutes or so, and am enjoying the fragrance it brings into my everyday life. And I look forward to exploring what other oils might be useful for my body and everyday.

For more information check out the Organic Aromas Website. Plus check out their Facebook and Instagram Pages as well. I love hearing about the weekly giveaways being run...my competition loving me wants to get in on the action. They also have a huge sale on diffusers at the moment as they make room for new stock. Get in quick.

Katie Cupcake also has a great review of the technical in's and out's of the Organic Aromas Diffuser. Check it out here.

chronic illness

Who are you today?

November 03, 2016

Chronic fatigue

10 Things Not To Do When Super Pooped (i.e. What Katie Did on Tuesday)

September 28, 2016

When you are crazily fatigued and exhausted you enter into another realm...it is the realm of the super pooped. No rational thinking occurs at this point. Random acts magically take place. The world is not a safe place with the super pooped on the loose!

Here are some words of wisdom...

10 Things Not To Do When Super Pooped

i.e. What Katie Did on Tuesday

1. Drive...yes, you have good automatic recall of how to actually drive, but when you can't remember how you actually made it to your appointment, start worrying...then there is the parking...yes, my car has more dings in it post CFS than life before...thankfully none added today! However, I did have to suppress a giggle at the elderly woman in front of me taking 100 attempts, the poor soul, to get into an angled space with a pillar next to it. I was worried about her car more than mine.

2. Eat really good looking paleo treats (choc hazelnut brownie) when you order your coffee before your appointment because you are so excited they have a paleo treat whilst forgetting you are going to the appointment for the intense stomach pain you are having. Pure decadent torture!

3. Write a guest blog post whilst drinking that said coffee before the appointment, forgetting that you have barely left the house in a week, and not only have you just used 30 minutes cognitive energy leaving the house, you have also showered, dressed and are out in public, so trying to work the brain not a wise idea. No fear that blog post will most definitely edited before sending off!

4. Try and do anything other than smile politely with a medical secretary who gives you "the look" when you ask whether there is a concession consultation cost and try not to make too big a smirk when she says pointedly 'only for official concession card holders' and you pull your very official concession card out of your purse...and try and ignore her snide remarks about how much rebate you are getting back anyway...whilst trying to restrain the not very tactful monologue about how far that $20 difference will go, and that in fact the appointment fees are 1/3 of the amount of welfare money that I am living on each week....however, I kind of wish I could have let it loose...maybe next week when I am less super pooped.

5. Cook dinner. Note to self (and others) baking paper burns when near the element you have turned on really high. Fingers burn when they grab the baking tray in the process of putting out the resultant fire. And this means posts like this are written entirely with your left hand on your phone as your right hand is now out of action, stinging like crazy.

Note to self 2. Check smoke alarms that didn't go off despite fire.

6. Cook dinner (Part B). Because when making pizza on gluten free wraps for 3 it is important to check:

A. How many wraps are in the pack...(2 it turns out, hence leading to point 5 drama when I tried to make an eggplant base for myself).

B. If we actually have any cheese! As a non cheese eater I don't pay much attention to this...I just presume it will be in the fridge. Turns out. Don't presume.

7. Post on social media. A bit like how the movies portray drunken texting of the ex in the early hours of the morning. Brain ain't functioning clearly. Had just spent an hour taking part in a mass tweet-a-thon for Millions Missing day...thankfully all my Twitter followers are all chronic illness related (apart from my poor mum!), but then forget the rest of the social media world isn't probably able to cope with the bombardment of random posts...so end up posting and deleting a whole lot...which I guess I can do unlike a drunken text, and seeing as Facebook pages formulas mean barely anyone sees my page posts anyway!

8. Try to remember where you hid your flat mates birthday present you bought months ago (cause you are a mostly organised individual!) so you can wrap it. Found it eventually...part in an unpacked box of handbags and shoes, and the other park under my desk in my office (read...walk in wardrobe/shoe box of a creative space!). In the process start cleaning room and reorganising life at 8.30pm...with killer sore hand (see Point 5)

9. Try and use any adjectives other than 'nice' and 'good' when texting with a friend. Sadly no adjectives to come. Which is odd, because normally when I am super pooped I can write brilliant cheesy 25 words or less competition entries.

10. Start pondering life, your existence and why that other person hasn't texted you back at 9pm. Always a bad move in the evening. For anyone. Not just the super pooped.

11. Count.

12. Realise you have a great idea for a blog post about being super fatigued and all the really silly things you did today and so your left hand starts typing away on your phone. And then all hope of falling asleep despite being super pooped isn't going to happen for a few more hours as you have missed the window of sleep opportunity. And your hand really hurts...

Chronic fatigue

This is Chronic Illness

September 26, 2016

blogger

On My Bedside Table...What I am Reading

September 24, 2016

So, what is on your bedside table at the moment?
What books are you itching to get through?
For me the reading has been pretty light on the past couple of weeks. My brain fog and regular headaches have prevented me dipping into much at all. So much so that some days even watching tv was too much cognitive effort.
Now, the pile of books beside my bed has been building up. However, I have started all of these books (even the one that only arrive yesterday!) and so am in various stages of each. Here are my thoughts so far...

Books I am Reading

1.The Songs of Jesus (Timothy and Kathy Keller)

Now I am way behind in this yearly read through...but no fret, I can pick up anywhere. I have loved the short snippets that can still my overly busy mind, and refocus me on God.

When I saw this book at the end of last year I knew I had to get it. A good friend (and pastor) once told me that when you are in those dry places and not wanting to open God's word, start with the Psalms, read one a day, reread it, meditate on it during the day. It may speak to you, or it may not on that day, but delve into God's word and He will refresh your soul. (This is of course paraphrased of this friend, because I am not the thinker/wordsmith that he is!)
I am currently re reading Psalm 77, as it really speaks into my life and into chronic illness. I so look forward to writing more on this psalm in the future. Every time I have opened this book the last few times, I have delved back into the entries on this Psalm and have been hesitant to move forward.

Psalm 77 starts "I cried out to God for help; I cried out to God to hear me." So real, so heartfelt. Wow.

2. Started Early, Took My Dog (Kate Atkinson)

A friend recently lent me this one when I was looking for a fiction read whilst away.

I am really enjoying it. Only downside is you need to have good brain capacity to be able to focus and read a large chunk at a time, because at times the story and characters (and time period) jump around a bit. So, with my flaky MECFS brain at times it is a challenge to focus, and I lose where I am up to. I guess that is the thing with well written literary pieces, they engage you on that next cognitive level. I am really looking forward to seeing where this author takes the storyline.

3. Lets Pretend This Never Happened (Jenny Lawson)

I saw this recommendation on someone's blog (thank you, whoever you were with the list of those with chronic illnesses should read). And I was instantly drawn to it. I personally have not been a follower of Jenny Lawson's blog, but I was interested to see how a blogger could turn their ramblings into a novel. This is an example of how. The entries are short. Perfect for my brain, or just before bed. The stories, at times, can be crude, however, I love her relaxed writing style, and conversation with the reader.

4. For the Love (Jen Hatmaker)

The byline for this book is "Fighting for Grace in a World of Impossible Standards." That itself says a lot. I also saw this book recommended by someone, or after I had read some other book (sorry, my memory ain't what it used to be!) And when I saw it on sale at Koorong one day as I was wondering through I felt I could invest my hard earned Centrelink dollars into it.

I love Jen's writing style. Simple, fun and realistic. It is about life! Real life. Not the Pinterest life we all want and are striving towards. The chapters are short and sweet, so again a winner in my eyes. looking forward to see where she takes this, and how grace and Christ are displayed.

5. Aches, Pain and Love (Kira Lynne)

As a single woman with a chronic illness I have often pondered how I am to survive singleness and sickness, and realistically where am I to meet someone. Yes, there are always cute doctors at the hospital, but with that whole patient/doctor code of conduct nothing will happen there, and what really could I put on my dating profile "Likes long naps in my bed, watching every possible episode of anything and everything on Netflix, and loves to eat out, just can't eat grains, gluten, and dairy." So, I am so interested to get in to this book, as this is a topic just not talked about. So far I have read the Foreword and the Intro, so more to come.

6. The Gifts of Imperfection (Brene Brown)

Now, my bestie handed me this book after reading it twice, and said I need to read it. The title itself I think is highly applicable. My struggle with perfection with a chronic illness has been a challenge and I will be interested to see where this goes. So far, I have read the preface...and therefore, I can't really tell you much more. However, I have had recommendations of other works by Brene Brown, so I really should get around to reading something.

This is what is on my bedside table at the moment.

What are you reading?

Would love to hear...please leave a comment below.

chronic fatigue syndrome

Surviving Moving House with a Chronic Illness

July 28, 2016

“It is with deep regret that I need to inform you…” Tears well in my eyes. The email from the landlord/rental agent confirms my absolute worst nightmare since being sick with a chronic illness. I have to move. AGAIN! This will be the fourth time since getting sick that I need to move.

Yes, moving is a normal life event. I get it, it happens. But when you have a chronic illness this process and the emotional, mental and physical toll it takes on you cannot be comprehended. The last time I moved it took months. Yes, months for my body to recover.

Why the toll? Well there is the physical toll of course…you have to pack things, sort things, move things, collect things, go to open houses and arrange inspections. And clean! So much cleaning! (Something I would normally avoid on a good day at the best of times!) Then there is the cognitive toll, the planning, the lists, the trawling of the real estate sites, the copious amounts of information that needs to be entered into applications, organising moving trucks, redirecting mail and making calls to change the utilities. Then there is the mental check list that goes around and around and around your head. Each time I awoke last night a mental checklist of all the things that needed to be done whirled around and around my head. This cognitive exertion is as bad and even worse at times than the physical. Then the emotional. The stress. Will it get done? How is my body going to cope? And the guilt…can I possibly ask that person to help…Again?!?

All of this is running around my head at the moment because last week I received that email. And so next week, we are moving. It has been less than 2 weeks since I received that email, and already my body has had enough. Despite my best efforts to limit steps, and pass on responsibilities, this body of mine has crashed, and I have spent the day moving from bed to couch...my brain so fried that I could not even follow an episode of Scandal.

Moving with a chronic illness is tough. I thought I would share some tips that I have formulated over the past few moves. The list is not perfect, and hey, I am hopeless at following my own advice...but here goes...

Moving House with a Chronic Illness

1. DON'T! Avoid moving at all costs!

However, as for most people, the onset of a chronic illness means a dramatic change in financial status, ability to self care and increasing medical expenses and requirements, so moving is inevitable...whether that be finding somewhere cheaper to live, back in with family, or closer to medical services. In the 4 years I have had chronic fatigue syndrome I have moved 4 times. Four times of packing up a whole house and moving. So, as the moving process is probably inevitable…keep reading below.

2. Start planning early

Aim for packing one box a day. If you have the energy, aim for two. Focus on the messy personal areas…bedroom, office, where you can cull and sort at the same time. Save the kitchen, the DVD collection, the bookshelves etc for friends and family who offer to help. And if they don’t offer to help, host a packing party…order pizza, tell your friends you need the help and direct them to the kitchen.

Write a few good to-do lists for moving administration, packing and cleaning. That way, you have the satisfaction of striking things off a list, you can also clear the muddled millions of to-do actions running around your head. It is also handy for when you have others help you, they can check what needs doing and just do it, with out needing to bother you with needless questions.

3. Invest in good strong friends and family

I am thankful I have a bunch of friends who have muscles…one reason to stay in contact with the fitness mad friends I used to exercise with! I am also thankful that I am a part of a caring Christian church community, where people help each other move all the time, and don’t think twice about it. I always feel guilty to ask. But am thankful for people around me who just offer. It is also a challenge to not feel offended when people cannot help. Many people are busy and have many commitments, some may not be able to help on moving day, but may offer meals, packing help, cleaning or unpacking assistance. Sometimes it is hard to find a strong support network, especially when living a life of chronic illness which is very isolating. Don't be afraid to reach out to community organisations, friends or family to see if they can help, or point you in the direction of someone who can.

4. Buy a heap of strong plastic tubs

These tubs are not much more than the cost of moving boxes...but they can be easily accessed and can store all the things you don't use regularly...and they are ready to go for next time you need to move. Write clearly on the sides so that they can be stored in a garage or shed and quickly located when required. I have found that in the time I have been unwell I have also left two teaching jobs, and so I have loads of teaching resources I have not had the time or the energy to sort yet, and so they are sitting in tubs waiting patiently for the day I return to work. At least with the tubs, they are waterproof and easy to pick up and move to the next location. Whilst on this topic of waterproofing…I have had multiple garages flood on me…so plastic is best! Also add some damp rid products in the area where you are storing to draw away moisture, and raise things up on bricks.

5. Escape on moving day.

Run far, far away...which I know has probably been your aim since the moment you heard you were needing to move...anything to escape this nightmare. However, truly there are some things you need to let go and let others deal with. I find this so hard! This is my aim for our next moving day. I have stated it already. Whether I am able to let go and not hold onto the control I so naturally hold, will be another issue. But that is the aim.

If disappearing is not possible, develop clear contingency plans. Have a chair ready to sit on at the new location. Stick up Post-It notes where you want certain items of furniture to go. Have all your bedding ready to go and be made up on your bed as one of the first priorities. Don't be afraid to walk away and take time out. Drink lots of water. Pack your medications to stay with you on the day. Have plenty of snacks available.

6. Trust.

Trust that there are others around you that can help. Trust the process. Write a list and walk away. Trust the Lord… He has you. He holds you...and each of your worries! A friend shared this with me recently when I shared my moving house fears...

"Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.”

Joshua 1:9 (NIV)

Moving house is not easy...on so many levels. All the best...my thoughts (and prayers) are with you wherever you are going through this. If you are reading this and don't have a chronic illness, I hope that this will encourage you to support and have a deeper understanding of how something like moving so deeply impacts those you know with a chronic illness.

Chronic fatigue

Just One Day

June 22, 2016

We all dream of spending a day in bed. One day when pause is pressed on the world and on your life. One day when demands, deadlines, screaming children, family dramas and the never ending pile of washing are put on hold. One day of your favourite series on Netflix, a new novel, a trashy magazine, a hot cup of tea, a warm blanket to snuggle under, and a rainy dreary day outside. One day in bed. Just one day.

But what happens when one day becomes two days. And two days becomes three, and before you know it a week has passed, then another, and then it's a month. And without warning this stretches to more months, and even on to years. And at that point you start dreaming for just one day.

One day when you could go to work and make a difference in the lives of others. One day when you could use your intellect and creativity to present projects and proposals. One day when you could run around in the backyard with your children. One day to celebrate family birthdays. One day to shop, cook, and clean for yourself. Just one day.

Just one day is the dream of so many living with chronic illnesses. One day when the pain, the limitations, the nausea, the fatigue, the repetition and dreariness are all put on hold. A day when you can live with spontaneity. A day where you can follow your dreams. A day when you can get up, shower, get dressed and have energy to face the day. A day where there are no medical appointments or medical bills looming. One day.

Quite often I hear from others around me, “I would love to spend a day in bed.” But when that day is everyday and a reality for so many, the perspective changes.

I don’t know if I will have my one day here in my life time. I don’t know if my chronic illness will allow me that opportunity. I don’t know if my body will be healed.

I do know that there is still hope of One Day. One Day when the new heaven and the new earth are ushered in. One Day when there is no more crying, and no more pain. One Day when the troubles and tribulations of this earth will be swept away. One Day in front of my Saviour, the one whom makes this One Day possible. The one who has set me free. The one whom allows me to make it through one more day, every day…so that one day I will celebrate that One Day.

‘He will wipe every tear from their eyes. There will be no more death or mourning or crying or pain, for the old order of things has passed away.” Revelation 21:4

Chocolate

When you are sick on top of sick

May 06, 2016

This past couple of weeks I have been sick. Not the usual 'I have a chronic illness' type of sick, but unwell on top of that unwell. You could say I had a case of 'normal' people sickness.

It starts with your body doing something strange that isn't on your typical list of symptoms. For me it was lower right sided abdominal pain, in a place, and with an intensity I had never experienced before. Your brain instantly starts weighing up whether you are imagining it, what could have caused it, whether it is an extension of another symptom, whether you ate the wrong thing the day before, whether you could have overdone it...

This mental battle continues...maybe it's not as bad as I think? Maybe it will disappear by itself? Dr Google provides no help...all his advice say it's a medical emergency, and you should go immediately to the hospital. But what if it is just my body?

A few hours later...

The pain continues. The pain is bad. Hmmm...maybe I should do something about this? This isn't quite normal, even for the stuffed up body of mine.

Being sick on top of sick is a challenge. Experiencing it this past few weeks, led me to some new observations I thought I'd share...

1. It might take everyone else around you awhile to get on board. You know your body, you know when something isn't right. When something is out of sorts. It might not be obvious to any medical recording devices...but you know when your temperature has spiked, even if it doesn't come up as anything. You have become an expert at reading your body. You doubt all the time whether you are sick enough...but you know when things are not right...and sometimes it is a challenge to get others around you to realise that something different or wrong might be going on with your body.

2. Nobody realises how big a deal it is for you to end up at the hospital...you are desperate.

You have had to be convinced by those around you, and by medical specialists to end up there. You spend the whole time questioning whether you are using up resources that could be put to use for others who are worse off than you, you question whether the pain is really that bad, and you forget that many people would end up in hospital for things you deal with on a daily basis. And with a strong dislike of doctors and medical professionals who just don't get it, you are freaked out you are going to have to prove how ill you are, or otherwise you feel like you are being written off.

3. Your pain is not taken seriously. You don't look like you are in pain as bad as you are rating it. But you are use to functioning with major pain. If you didn't function and get on with life in pain, life would not happen.

Medical Professional: "Rate your pain between 0-10."

You: "Currently an 8"

Medical Professional: "Really? That's high! Are you sure? You don't look in that much pain?"
(Not always verbalised...sometimes the look says it all!"

You: "I live with pain at a 5 most days. I have regularly taught kindergarten with a full blown migraine...I can do pain!"

Nurse: "We don't like to release people with pain higher than a 3."

You: "That would be nice, I haven't been below a 5 in years!"

4. You have better access to helpful drugs at home.

Hospital Nurse: "Let me give you something for that pain. How about some paracetamol or ibuprofen?"

Me: "Ummm...how about some chocolate? That might be more effective."

5. Often, you never get an answer. You will never find out, despite all best methods, all tests, all the poking, prodding, praying and Dr Googling. This sickness upon sickness will pass, without a clue to what caused it, what treatment actually helped it, or what it was at all!

And that is where I stand this week...still in pain, still without a diagnosis, one CT scan, two hospital visits, three doctor appointments, multiple blood, urine and ultrasounds later, and a plethora of medical opinions. We still don't know. The medical mystery that I am! And so, you wait, and trust, and work at being thankful that you have a God who carries you, has a plan for you, and knows you and your currently rather defunct body intimately. To whom you are not a medical mystery!!