ME Awareness 2017

Imagine one day you wake up and you can barely move from your bed. You try to lift your head but it feels too heavy, almost like you are trying to lift up a heavy rock.

Your cat is lying beside you and senses you are waking, he walks up along your body. Ow! You didn’t realise he was that heavy. His tiny paws digging into your body are so painful. As you try to pull yourself out of bed, you feel stiff, heavy and achy and your joints are sore. Your body feels like it has aged decades to your eighty’s.

As you rise you feel your head spin and your body struggle to hold its self-upright. A million thoughts start to overwhelm your head and you start to wonder why am I feeling so awful? You barely make it from the bedroom to the lounge. Your body feels like it has just run a marathon.

Maybe you’re coming down with something, like the actual flu….. Or maybe today is just an off day. But then the next day feels much the same, days then turn into weeks, then months then years.

Just like that you have gone from be a young, fit, healthy and capable human being into a weak, venerable, confused and incapable human being. You can barely leave the house, let alone look after yourself and your loved one has turned into your carer.

Your doctor and other doctors can’t explain it, won’t acknowledge it, or know about it but can’t help. Leaving you at a loss as to where and how it all went so wrong……

Wow that sounds horrible and depressing! That my friends is a small taste of what life with ME/CFS aka Myalgic Encephalomyelitis /Chronic Fatigue Syndrome is like.

Today is ME/CFS awareness day! As a yearly ritual I like to get on board and help promote awareness on our intentional day of May 12th (read previous posts for 2014, 2015 , 2016 here).

Sadly there are millions of people world wide that are currently suffering with this illness. Many sufferers are left house bound, some are even bed bound. The recovery with this illness can take years, even decades. Unfortunately there is still a lot to be learned and research to be done about ME/CFS. Some health professionals still believe it is all in the sufferers mind, as there is still a lot unknown about the illness. Crazy right!?

I suffered with this illness back in 2013 and become completely bed/house bound for years. It was a very isolating and debilitating experience to go through. Thankfully my health is in a much better place now.

For more information about ME/CFS or to find out how you can help check out the Australia ME/CFS website emerge.org.au.

I am extremely excited to be completing in City2surf this year and fundraising for ME/CFS. Funds donated are going to emerge, they are a wonderful advocate for ME/CFS sufferers. If you want to get behind me or share some love and support click here for my everyday hero page.

Thanks for reading, I hope you have a wonderful day!

Much Love,
Lennae xxx

 

 

Photo credit: a.m_banks- Instagram

 


Walk for ME!

Taking in the view.

 

Hello beautiful readers, I hope you’re all well!

Can you believe it’s May already? Where has the year gone?!

As some of you might be aware for a few years now I have been suffering with ME/CFS (Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome). My health is a lot better now and my days with ME/CFS feel like more of a distant memory, however May 12th is International awareness day. As we are approaching awareness day pretty quickly, I want to put it out there that I will be dedicating a huge goal of mine to raising awareness and fundraising for ME/CFS.

Back in 2012 I participated in City2Surf for the first time ever, l had a fantastic time and was eager to participate in the following years event. Unfortunately that year I became unwell with ME/CFS and haven’t been able to enter since.

Well friends, I’m extremely excited to announce that this year is the year, that I will be taking on this goal!  Exciting isn’t it! It’s been worth the wait! I have always vowed to myself that, when the day arrived I would dedicate/ fundraise my race to the Emerge charity to help fundraise for ME/CFS.

If you’re not familiar with City2Surf, let me tell you a little about it. It is a 14 km race from the Sydney CBD out to the famous Bondi beach. The event is held in August and usually attracts more than around 80,000 people, making it one the largest runs of its kind in the world. It is a fun but challenging event that is suitable for most people with a bit of a fitness level, whether you are entering for the competitive race or just for fun, dressing up is always optional. You can find all types of entertainment along the race, it truly is a fun morning out.

I am super thrilled to be entering this year, this has been something I have had my heart set on doing for a few years now. I have built up my strength day by day from being bed ridden to where I am today.

I have meet many wonderful people online, world wide who suffer with this illness. They have all helped make what was a very difficult journey a much happier and brighter one. This one’s for you team!!!

I have started an everyday hero page through the City2Surf website, this page is where you can join me on my journey. You can view my training that I will load up a couple of times a week, with my number one trainer Snowy.  I will also keep you posted on my Instagram, but for my everyday hero page click here. I would love for you all to pop over to my page, share it, donate or just say hi, Snowy and I would love the encouragement!

 

Much love

Lennae xxx

 

City2Surf 2012.

 


Wrapping up 2016 and Bringing on 2017!

Photo credit @a.m_banks- Instagram

Photo credit @a.m_banks- Instagram

Welcome to 2017….. Where on earth did 2016 go!!!

I know I’m a little late to the party, but I can’t help myself I love wrapping up a year that’s passed and looking forward to the beginnings of a year ahead! I don’t know about you guys, but a new year just brings a whole lot of exciting and endless possibilities!!!

Although I can’t say I have completely recovered from ME/CFS (Myalgic encephalomyelitis/ chronic fatigue syndrome) I am more functional and active than what I have been in a long time. 2016 was a good year for me, my health turned it up a notch and showed me that my days with ME/CFS are becoming more like it was all just a bad dream.

Throughout 2016 I did have a few issues with my health, but they ended up not being ME/CFS related. How good is that!
2016 showed me a normal and active life, that I am more than welcoming back. I was able to work my way up to working 15 hours a week and maintain that. I will increase the hours more at some stage, but right now I am happily enjoying this work life balance. I also enjoyed a bit of travelling, going interstate, as well as heading over to Singapore off on a cruise. I remember feeling on the cruise like I wasn’t a sick person (how amazing is that). I was also studying some of last year, however I did have to place my studies on hold. I hope to continue them at some stage, possibly in a years time. Putting my studies on hold allowed me time to complete my main goal of returning to work and also allowed me to focus more on my fitness. Which Snowy and I have been loving!

Anyway enough about 2016, we are now in 2017!!!

Whoohoo, bring it on!!!

This year one of my main goals that I will achieve, is dedicated to when I first became unwell. When I first became unwell in 2013, I could barely move. At the time all I could do was lay in bed or on the couch. I did a lot of soul searching and googling online about ME/CFS and came across mostly negative stories. This did not help my frame of mind, I needed something positive. I had no idea when I would get better or how long it would take. However I needed something to look forward to. I decided to make a vision board, it was something I hung on my wall, where I looked every day and helped when I wasn’t feeling the best (which at that stage was everyday). My vision board consisted of destinations that I wanted to visit and stuff that I wanted to be doing once I finally started to get better. The one thing that stuck out to me however was Machu Picchu. I have no idea why, it just did. I decided when I was finally well enough and able too I would go there someday. Thankfully my beautiful friends I am well enough to get my butt over to that amazing place and show ME/CFS who the boss is now!!!

To some it may not seem like a big deal, but to someone that has been suffering with a chronic illness it means having your life back. Suffering from a chronic illness is hard work, but recovering from one is even harder. Achieving your goals is rewarding, here’s to a year full of achieving your goals and setting new ones.

Have a happy 2017 my friends! I hope you all have a fantastic year ahead, sending lots of love, hugs, spoons and positive vibes your way.

Lennae xxx

Photo credit @a.m_banks- instagram

Photo credit @a.m_banks- instagram

Photo credit @a.m_banks- instagram

Photo credit @a.m_banks- instagram


Mr Spoons Adventures

Mr Spoon at Flagstaff hill park, Wollongong.

Mr Spoon at Flagstaff hill park, Wollongong (Photo credit: Instgram @a.m_banks).

Last month I was fortunate enough to be visited by the famous travelling Mr Spoon. He travelled all the way from Germany taking a couple of detours around Australia, before turning up on my door step.

You’re probably wondering who is Mr Spoon and what’s his story?  Well let me tell you!!!

Mr Spoon was created by the wonderful Theresa Laura at spoonsforhappniess.com.  She created him for the Spoonie community. His job is to help each person that receives him feel less alone while dealing with their illness and help them feel connected to a wonderful worldwide community.

Now you’re probably wondering what is a Spoonie?

A Spoonie is someone that suffers with a chronic illness, for more details read Christine Miserandino’s Spoon Theory.  Mr Spoon is helping raise awareness worldwide for people that suffer with a chronic illness. As you may know I have suffered with ME/CFS (Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome) for over 3 years. My health is a lot better, however I was bed ridden at one point. For some spoonies they can be house bound or even bed bound. This means basic activities can be almost impossible for some.  Knowing that Mr Spoon was travelling around to help with raising awareness, I was more than happy to help and support Mr Spoon on his travels. Anything that helps to raise awareness for any type of chronic illness is always welcomed.

Now that we have covered the important facts I would love to share my adventures with Mr Spoon with you all! Mr Spoon ended up staying with me for over a month.  Our first adventure was our road trip down the coast to Melbourne. Mr Spoon decided to hide in the back seat on the first day, but we managed to get a lot of sightseeing pictures the following day. We looked for whales in Eden, NSW, crossed over the border to Victoria, and headed for Melbourne while hugging the coast as much as possible (for more details about our road trip click here).

After our big road trip Mr Spoon and I were happy to chill out during the rest of our time together.  Before I was due to forward him on, I decided to set him up with a bit of a photo shoot. Mr Spoon loved every moment of it, he is a bit of a model and I’m pretty sure he would win Australia’s next top model if he wanted to hang around and apply.

After a lot of beach therapy and way too many photos, Mr Spoon headed off via Australia post to see the next wonderful Spoonie.

If you would like to have Mr Spoon come visit you, feel free to contact Theresa Laura at spoonsforhappniess.com.

Thank you for visiting Mr Spoon and keep doing what you doing!

 

Lennae xxx

 

Hanging on tight to Buddha.

Hanging on tight to Buddha (Photo credit: Instgram @a.m_banks).

Looking over City Beach, Wollongong

Looking over City Beach, Wollongong (Photo credit: Instgram @a.m_banks).

Wollongong Harbour

Wollongong Harbour (Photo credit: Instgram @a.m_banks).

 

Whale watching in Eden, NSW.

Whale watching in Eden, NSW.

Mr Spoon takes on Melbourne!

Mr Spoon takes on Melbourne!


Cruising Holiday

Credit Pixabay

Credit Pixabay

As I’m getting better with my illness (ME/CFS) I’m starting to feel more confident and adventurous. Last year the husband and I went on a NZ adventure which was a huge success. I’m now more than ready to push the boundaries a little, plus I need to test the waters and see how I’ll pull up for my big 30th trip next year (I have huge trip goals)!

One of my beautiful friends is turning 30 soon, she decided that she wanted to go away and I was more than happy to tag along and celebrate with her. After a number of conversations across the ditch with her, we came up with the idea of going on a cruise!

I have always heard people rave on about cruises, my thoughts however have been that they are mostly for old people, or the thought of being stuck on a boat out at sea would be boring. I guess it’s one of those things that you shouldn’t knock until you’ve tried it.

Having chronic fatigue has made me think that a cruising holiday will be quite ideal for me and my holiday goers. I have done some research and educated myself on cruises and I want to share with you all why they could potentially be a great way to holiday! Especially for my fellow friends out there, that suffer with an illness that restricts you from doing things.

  • You have everything available to you on board, it’s like a mini village on a boat, but moving and at sea.
  • This means you can basically do what you like on board. If you want to have a nice meal and get dressed up you can, or if want to lounge by the pool all day you can. If you’re not feeling up to the day trips or don’t feel like doing much while on your cruise that’s fine.
  • If you’re having a rough time, no problem chill out, do what you need to do. No need to worry about your cruising party, there’s plenty to do and plenty of new friendly faces to meet.
  • A medical team is always on board and are there to help if you require it.
  • Food, there are so many options available, did I see a smoothie health bar somewhere!?
  • The best thing about a cruise is that you’re not missing out, your still holidaying and getting away, sometimes just a change of scenery is all you need.

As I haven’t actually cruised yet or cruised before, I got talking to the lovely Sophie from the Cruise Agency. She informed me of a lot of exciting healthy and relaxing options that are available while on a cruising holiday.

Here’s what I can look forward to on board;

  • First and most importantly there’s a day spa on board. Take your pick from massages, hot stone, facials, body wraps, scrubs, spray tans, you name it.
  • If you have a love for alternative medicine/ natural therapy you can find acupuncture or reflexology on board.
  • Experience and enjoy the many different relaxation rituals available at the Thermal Suite, with heated beds, showers and a collection of exotic steam vapours throughout. Or try Rasul, an Arabian cleansing ritual of chakra muds and aromatherapy.
  • Exercise classes are on board as well as yoga, pilates and a gym! If you need to keep at your  daily exercise routine there are plenty of options to choose from. I know I love to keep my daily steps up on my fitbit and I’m a huge fan of yoga!
  • Healthy food options and dietary needs can be catered for. The food options are endless with a selection of cafes and restaurants on board.
  • Library, if you enjoy a good book and looking for a relaxing quiet place to read you have options.
  • Crafting, scrap-booking and board gaming, are quiet enjoyable activities to relax too.

Wish me luck on my cruising experience, I’ll be sure to share it all with you once I’ve had my cruise in a few month’s time. It could not come any sooner!

If you’re interested in cruising head over to the Cruise Agency website and chat with the lovely Sophie, she will point you in the right direction.

Much love,

Lennae xxx

Credit Pixabay

Credit Pixabay

 


ME Awareness

20150512_124848-01

Hello my beautiful readers!

Today I wanted to share with you a bit of awareness about my illness. This week is ME Awareness Week and today is International ME Awareness Day, what a good time to share and educate you all.

Your probably wondering what ME is? And what it actually stands for. Let me explain, don’t worry I’ll keep it simple!
ME stands for Myalgic Encephalomyelitis, it is also known as Chronic Fatigue Syndrome (CFS) or Chronic Fatigue Immune Dysfunction Syndrome (CFIDS).

If you break down the meaning of Myalgic Encephalomyelitis this is what you get; MYA– Muscle
ALGIC– Painful
ENCOPHALO– Brain
MYEL– Nerve
ITIS– Inflammation

Quite literally that is how ME affects the body, then add on the fatigue! Sounds unpleasant right?

I could describe it as almost like having the flu 24/7, but then I don’t know if that would be giving you a full extent of what ME can actually do.ME is extremely debilitating and can take years, even decades to recover from.

It is believed that Florence Nightingale suffered from this illness back in 1857. In honour of Florence Nightingale aka “lady of the lamp”, her birthday 12th May has become International ME Awareness day.

ME has been around for a long time. However it is an invisible illness and that can make it quite hard to understand. Frankly a lot of the sufferers don’t look sick! There are no tests that can be done to show that there is something wrong, nor is there any specific medications to help. More research and understanding needs to go into this illness. Research needs to go into finding out how to prevent this illness, recovery treatments or a cure if possible.

If you would like to get involved and help raise awareness for ME, feel free to wear something blue, start the conversation with someone and help us educate one another, search the #meawareness #mecfs hash-tags on social media and read about sufferers and their stories with ME and how it affects their everyday lives, or even donate to your local ME charity!

For more information about ME or if you wish to get involved or donate click here. This is the Australian ME page known as Emerge Australia. Thank you for taking the time to read my post beautiful readers, Happy International ME Awareness day!!! Lennae xxx

Wearing a bit of blue for ME Awareness.

Wearing a bit of blue for ME Awareness.


Studying with ME/CFS

Hello beautiful people! I apologize for being a bit absent lately. I have been extremely busy being a student. I thought I might share with you all how studying is going for me so far.

As some of you know I am studying a diploma in Nutritional Medicine. I am currently half way through the first semester and have started my first set of exams and assessments for each subject, it’s a bit scary. For the term I’m studying four subjects, which isn’t too bad considering some days I may not be well enough to study. I got a shock when I realised two of the subjects I had to study where “Biochemistry” and “Anatomy & physiology”! Ah science and I do not go well! Of course I had panic attack, but I’m up for the challenge!

Three weeks in and I was struggling to get a routine going. I’m not proud but there were tantrums thrown. My brain was not handling the information overload from biochemistry and anatomy & physiology, who knew you needed to know all of this information. I called my special assistance adviser at the college. I was allocated a go too person for extra support if I need it because of my illness. I told her I was struggling with those subjects. She assured me not to worry, she teaches those subjects herself and the majority of students struggle with these subjects. I felt reassured after our chat.

The past few weeks have been challenging, but it is also challenge for other students as well. Being an online student we have weekly forums, this is how the students and teachers communicate. I have posted on the forums with questions about things I’m not sure about or if I’m not quite understanding parts. Other students have commented explaining they feel the same way, which is good to know that I’m not the only one.

I have now managed to get a bit of a routine going and have come up with some tips that will definitely help anybody else who is studying with an illness.

Work at a desk. My first week of study was on the couch, my back seized up and it was off to the chiropractor to get clicked. A good desk and chair will definitely help.

30 Minute stretch breaks. Every 30 minutes I get up and stretch. I found stretches online that people do when they are sitting at a desk all day. It’s a good idea to get movement and to get out of your chair. It’s also a good break if you have a short attention span.

Routine. Find a routine that works for you.

Ask for help.
If you are having trouble understanding something ask someone for help. It can be anyone, a loved one, family member, a friend, your teacher, or a fellow student. They may know your answer or are willing to help you find the answer.

Spread your study out. I was trying to cram my study all in, I struggled to take in all the information and was left feeling exhausted. I quickly realised I have all week to spread it out and do what I can, when I can.

Plan. Plan your study out, mark down all the important dates that you have assignments and exams due. It helps especially if you need time to prepare for them.

You can do it! Yes you can! Keep trying and don’t give into self-doubt.

It is too early to say how I’m going with this term, I will have a good idea once I have completed the mid-term exams and assessments. I sat my first exam over the weekend and passed! WHOOOHOOO! I’m extremely proud of this result. I have found it challenging trying to balance studying as well as my daily routine on top of ME/CFS. This positive result was just what I needed!

Are you thinking about studying? or are currently studying? What are some of your study tips that help you? I would love to hear about them.

Bye for now

Lennae xxx

My text books

My text books