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

 

ME Awareness, Symptoms with ME

Photo credit: Photos_by_ambanks-  Instagram

Photo credit: Photos_by_ambanks- Instagram

It’s ME/CFS (Myalgic encephalomyelitis/Chronic fatigue syndrome) awareness day. As a yearly ritual I wanted to get on board and help raise awareness about the illness (see previous years posts here ME Awareness 2015 & ME Awareness 2014). As most of my readers know I have been living with this illness for the past few years. It is a debilitating illness that still needs a lot of research. The cause of the illness is still unknown. There is also no treatment plan for this illness and some sufferers take many years to recover. Unfortunately some sufferers do not recover.

I’ve decided to write about some of the crazy symptoms, that I have experienced with ME/CFS. I hope this helps you understand that this illness is more than one symptom and is never straight forward for any sufferer. In fact most sufferers experience a number of different symptoms and each persons experience with the illness is different.

Are you ready, here we go………

Food intolerance/ Sensitive stomach/ Digestive issues 

When your stomach decides to pack a tantrum and tell you that it does not like eating the food you like any more. What? How? Signalling back to you with stomach cramps, nausea, bloating, aches and pains or just sending it straight out! Nasty business this, I personally had it that bad that I went and had a food intolerance test done. Turns out I learnt I had a mild intolerance to two foods I causally ate, but not the rest!!! What the hell!!!

Anxiety

Oh yes that horrible feeling when your heart starts beating rapidly, you feel a hot and cold sweat breaking out and your mind races into a crazy panic state. Your breath feels shallow and is this even real or am I dreaming?  I mean where the hell did this come from!!! Fear of things that never consumed my mind before, I mean why are these thoughts clogging up my brain!!! Where has this all come from? Oh Hi Anxiety, you can go now!

Brain fog

When your brain feels like it has a thick layer of fog over it. Yep sounds strange but it is a real thing. Causes confusion, self-doubt, lack of focus or concentration and makes you do and say strange things. Strange things that your dog would appreciate, like being fed twice for breakfast. Or when you start repeating yourself and asking the same things over and over, because you don’t remember asking them just a minute ago. Oh dear!!!

Muscle aches and joint pain

Yep that’s right! When your body feels like you just ran a marathon, but all you did was walk 20 steps.  Muscle and joint pain from moving too much, as well as from not moving enough!  What!?  I know it blows my mind too, but it is a real thing. If you try and push yourself a little with any type of extra activity, it can result in extreme muscle or joint pain and then it’s back to bed for days. Making you feel like you physically got hit by a bus. If you don’t move your body enough your body ceases up and becomes stiff resulting in muscle and joint pain. Even the weather can influence this symptom. Aches and pains in the cooler weather as well as in the humid weather.

Extreme sensitivity

A really weird symptom that can cause extreme sensitivity to all types of things like noise, people and their energy, smells, sunlight, cleaning products, cosmetics, skin care products. How this works is when you may feel like you are having a reaction to it. You might feel instant fatigue, feel itchy or heavy. Smells may irritate you, you can’t even be in the same room with someone if they’re wearing perfume. Even cosmetics or skin care can feel heavy and irritate the skin.

 

I could go on with the list of crazy symptoms, here’s a few more just so you get the idea; fever, memory loss, heart palpitations, muscle weakness, dizziness, headaches/ migraines, insomnia. They all come and go with this illness, but there is honestly too many to list and everybody that suffers with this illness suffers very differently.

I hope this has helped you learn a bit more about ME/CFS and has given you a little more insight of  some of the symptom struggles sufferers go through.

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

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

Much Love,
Lennae xxx

Photo credit: Photos_by_ambanks-  Instagram

Photo credit: Photos_by_ambanks- Instagram

ME Awareness

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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.

Hard times don’t last!

photo credit: Valeria CL via photopin cc

photo credit: Valeria CL via photopin cc

“Nothing is permanent not even our troubles.”

Have you ever had that feeling, where you feel like you could burst or cry from excitement? I’ve got that feeling and it’s taken what feels like forever to feel like that again!

I am well and truly getting better. “Hello world, I’m back!”
I am super excited to become a part time student and will be studying a diploma in Nutritional Medicine. That means I will become a Nutritionist once I’ve finished! This is my dream job! If you had told me this would be happening a year ago, I would have been completely upset as there was no way. Dreams of living an active life were impossible. Now I feel like anything is possible I’m out and about every couple of days and not paying too much for it!

Before I got sick Cameron and I were saving our money furiously to buy our first home. When I got sick this goal was still in our sights but I’ll be honest I became terrified about buying a house. We spent a lot of time and effort to make this goal happen, only to be knocked back. We were right at the point of going through the purchasing process. It was devastating! All that time, effort and energy we had put in for a negative result. Unfortunately it was out of our control. It was just not meant to be at this point of our lives.

Re-focusing on the positives we poured our energy into other goals that had been side lined. Since then Cameron has started up his own business as an electrician and I will now be a student! These goals would have been much harder for us to achieve whilst having a mortgage. At the time it was upsetting but now I’m glad that it happened.

Dealing with my illness at the beginning I felt like my life was over. Now I see it as an obstacle pointing me into a new direction. Everything happens for a reason. I may not be able to control what happens, but I can control how I react! As Justice Crew would say Que Sera! http://www.youtube.com/watch?v=9MDTCF1dp28

Bye for now

Lennae
xxx

photo credit: symphony of love via photopin cc

photo credit: symphony of love via photopin cc

Slowly getting there

Over the past week I experienced one of my many setbacks. That meant I was resting up on the couch and spent most of my time watching “Orange is the new black season 1 & 2”. A great chick flick series, I highly recommend! At times I found a tiny bit of energy and tried to entertain our new border collie puppy Snow. She is a little sweetheart but all puppies require attention. Lucky for me she would much rather play with Barry our cat.

During the weekend I suffered a little more on top of my setback, a horrible stomach bug knocked me. It zapped all the energy from me leaving unable to move around at all.

A few days on and I’m feeling a bit better. This setback came right on queue and marked one year since I have become chronically Ill with ME/CFS.

Positive-Picture-Quotes

It’s hard to feel good and happy about this, the fact that I’ve been sick and unable to do much for over a year now is a bit sad and depressing! But I’m not going to see it that way, yes it’s not ideal but I just have to make the best out of a bad situation. I know I’m on the right track and I am helping myself as best as I can. I’m nowhere as bad as I was this time last year. I can get out of bed and any day that you are able to be out of bed is a good day.

Over the past two months everything has been going very peachy and on track. I was even hoping that maybe I would be ready to try and start back at work. Two months is a really good run and it is my longest stint yet! Of course I had a couple of bad days here and there, but they were following outings. Unfortunately setbacks are all part of the recovery and I will keep experiencing them, however the good news is they aren’t as bad as they use to be and are not as long. The other good thing is that I am now experiencing stomach bugs like everybody else usually does. Before I wouldn’t experience these illnesses, instead I would have other strange symptoms.

All in all, one year on with living with a chronic illness and I’m slowly getting there. Everyday I remind myself that It will get better and it does.

Bye for now

Lennae
xxx

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#May12th

May 12th is international Myalgic Encephalomyelitis (ME) awareness day. For me this is a day about raising awareness for my illness. I’m obligated to raise some kind of awareness for my illness, even if I can’t get out and do a lot.

A great way to celebrate and raise awareness for this cause is to wear something blue or purple, have or host a high tea party or donate to the cause. Places around the world are lighting up buildings and homes blue or purple for ME. Some groups are hosting high tea fundraising events. I would love to be able to get out and about, or do a crazy fundraiser, however the reality is I can only get out when I’m well enough and that isn’t as often as I would like. Being around people or busy environments can be extremely challenging as well.

I’m determined to do my bit! Whether I end up having a small high tea party at home or getting dressed up in blue, I will definitely be donating to raise funds for research into my illness. I’m also participating in a blog bombing event with other sufferers that blog. We are all sharing our stories and hash tagging #May12BlogBomb. Keep an eye out on Social media or feel free to join us! If you decide to join in make sure you use one of these awareness hashtags on social media #tea4me #mecfs #spoonies #lightupthenightoz #may12th #meawareness.

People suffer from this illness all over the world, here’s a few figures to show you just how many of us sufferers there are out there;

Australia – 150,000
New Zealand – 10,000 – 20,000
UK – 250,000
USA – over 1 million

The cause of this illness is still unknown by medical professionals. This is why we need to raise awareness and funds to find out more. This illness can happen to anyone, even you! Please help me raise awareness for this horrible illness.

Bye for now

Lennae
xxx

Statistics are from the following websites; https://www.southerncross.co.nz/AboutTheGroup/HealthResources/MedicalLibrary/tabid/178/vw/1/ItemID/196/Chronic-fatigue-syndrome-Tapanui-flu.aspx http://sacfs.asn.au/about/general_info/fact_sheet.htm http://www.meassociation.org.uk/about/what-is-mecfs/ http://chronicfatigue.about.com/od/whatischronicfatigue/a/cfsfactsheet.htm
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My CFS/ME Feel Good Tips

Suffering from CFS/ME can be a struggle. At times its hard to feel good about myself in my uncomfortable body. It is important to feel good and to try and be as happy and comfortable as you possibly can throughout this journey. I have found relief in some things and would love to share them, any thing is worth a try.

Heat pack
Invest in a decent heat pack, they bring relief to any aches or pains in your joints or muscles. A heat pack relaxes your muscles and can bring comfort to any kind of pain.

Dark ChocolateInstagramCapture_77ab3bc7-c12b-4af2-9aeb-f37a8fed7e1c_jpg
Dark chocolate is a healthier choice compared to white and milk chocolate. I love chocolate it makes me feel good, for me it is a major comfort food. Choosing dark is a much healthier choice. Dark chocolate is full of antioxidants, it is high in magnesium, iron,copper and potassium. There are a lot of great ranges out there in the supermarket and in the health stores. It tastes pretty good too!

Inspiration board
Make an inspiration board of all your hopes and dreams that you wish to one day fulfill. Visualize your goals and put them up using pictures, they can be things like; wanting to buy a home, studying, running a 1/2 marathon, career change, starting a family, a trip down the coast or even a trip abroad. Anything that you can’t currently do and would love to do, put it up. Leave your inspiration board in a room that you are in everyday, that way you can see it and remind yourself that once your better there’s no holding you back!!! My inspiration board is solely dedicated to South America, it’s been a goal of mine for a long time. When I’m well enough it will be such an accomplishment.

Massage
Go get a massage! It is always relaxing and feels good on my muscles. I find that after the massage I feel a lot better. I often feel energized and can manage a few extra activities around the house.

Visit the Hairdressers
Go get your hair done, whether its just a wash and blow dry or a cut and colour. It doesn’t matter what you get done its just nice to have someone else dealing to your hair for you. You will feel good about yourself and best of all, you only need to sit there!

Positive affirmations and quotes
Find some positive affirmations or quotes that you like and put them up around your house.They are good for those days where you are really struggling. It can be really hard to be positive and look forward, when you are physically unable to. Having these around the house can help lift your moods and brighten yourself up. InstagramCapture_6b9c0a99-f671-4fb7-bdf3-24fb1388743a_jpg

Goals
It’s important to set goals for ourselves. Getting better is a major goal, to achieve this we need to put in place small steps to get us to that point.
A good idea is to write down each day what your day currently consists of, it could be things like; shower, make lunch, prep dinner, check mail, sit in sun for 10 minutes, watch TV, use computer. Once you have an idea of what you are able to manage each week, you can then set little goals each day/week as to how you are feeling. This is a great way of seeing how you are going, are you doing too much, or can you manage a bit more? Was there an activity that caused a setback? Set up small goals and trying each day to achieve them will eventually get you to where you want to be!

Light exercise
Practice some light exercise, whether it be a simple yoga pose with breathing, a small walk around the block, or lifting 2 tins of baked beans 5 times daily. Building up some activity is important for your body. This can be quite hard to get started, but once you form a little routine you will be set. You must listen to your body as some days you won’t be able to manage as much as other days. Visiting an exercise physiologist or someone who specialises in exercise rehabilitation will be able to help set up a program and give you suitable exercises for movement, muscle and breathing. Exercise can help boost your mood, help gain back strength and muscle. Learn, listen to your body and take it slow and steady.

Eat healthy
Try and eat healthy in your diet. It is important that we eat right and try and help our bodies as best as we can during our health journey. Eating healthy helps your body function better and you feel better for it. Fueling your body on food that is not healthy will make you feel much worse than what you already are.

Treat yourself
If you can’t get out to the mall, then try online shopping! We all need pampering and spoiling, just because we are unwell doesn’t mean that we shouldn’t be treated. You can buy anything online these days so there is no excuse.

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Having a pet is always a nice comfort. Pets make for good company and are always loving. They give you cuddles which make you feel loved, it’s nice and relaxing to pat them. Having a pet around will also give you a sense of responsibility and a job for each day such as, picking up after them, playing, walking and feeding. Pets can be very loving and they can always sense when your down or need a hug.


Social media

Social media can be a great thing and a bad thing. In this case it is a great thing. Having CFS/ME I can sometimes feel like I’m alone in this big wide world. I have a loving and supportive network around me, but sometimes its hard for loved ones to completely understand if they haven’t experienced an illness like this themselves. I have connected onto Instagram and Twitter and have found a lot of fellow sufferers like myself. They have all been inspiring and positive and can relate to some of the symptoms and feelings that I am going through. It is a great feeling to be able connect with people all around the world, we are very lucky in this day and age to have technology.

Positive people

Suffering from CFS/ME leaves us with very low energy levels and when it comes to talking to people it can be very exhausting. Having negative people around you can bring you down more than what you are already, and takes up a lot more of your energy. We need all the energy we have, we also need to be as positive as we can. Having positive people in your life helps you keep upbeat, energized, and help you think more positively about your outlook. You may find that when you take a small step in your recovery that the positive people around you are excited for you. We need all the love and support in this challenging journey. Ditch the negative Nancys!InstagramCapture_f9be9dcc-caf9-42fc-8e4e-d2edd9008564_jpg

I hope at least one of these ideas may help you with your recovery journey. The tips above are helping me in my recovery, if they can help you in any way that is fantastic! Please remember I am not a health professional in any of these health fields, for professional advice please seek out a professional. If you find something that helps you stick with it, and most of all keep positive!

Bye for now

xoxoxoxoxo