M.E/CFS not a lazy syndrome | CFS Health

M.E/CFS is not a lazy syndrome.

For a long time there has been a misconception that M.E/CFS is a lazy syndrome. In the late 80s/90’s M.E/CFS was considered the “yuppie flu”. At the same time, it was said to be all in the head by some medical practitioners and GP’s claiming it as just depression. It has only been in recent years that finally M.E/CFS is being considered as real illness, that of which it has been for many decades.

Ironically, M.E/CFS does not affect the lazy, non doer types. Quite the opposite. It predominately effects type A personalities, over achievers and over doers in life. And whilst it is a complex illness, it is fair to say that you would not wish the illness upon your worst enemy.

Excruciating fatigue, muscle aches and pains, dizziness, nausea, flu like symptoms, swollen glands, sore throat, weight gain/loss, hot flushes, irritability, brain fog, memory loss, poor concentration levels, panic attacks, secondary anxiety and depression. It is practically having jetlag 24/7 combined with muscle aches and pains even after resting in bed for days or weeks on end.

Chronic Fatigue Syndrome is very different from every day fatigue. When a person is experiencing normal fatigue they will feel worn out, drained and tired. But this eventually goes away with rest.

Chronic Fatigue Syndrome is stronger and lasts for much longer and cannot be cured by simply getting more sleep and resting up. Chronic Fatigue Syndrome leaves its sufferers exhausted after even the smallest activities. Even walking around the block may be enough to make a chronic fatigue patient bedridden. Often people with chronic fatigue were once fit and active. So finding even small tasks so draining becomes frustrating and aggravating and often makes the person feel helpless and depressed.

It differs from normal fatigue in two fundamental areas: severity and time. It is more severe in that it actually disables the sufferer and it is more prolonged in that it lasts for more than 6 months, often in many cases, years on end if they don’t get on top of their health.

When people say come on just sweat it out, push through it, it is probably one of the worst things you can do whilst dealing with M.E/CFS. When you push through M.E/CFS which most do because they WANT to do things, there comes an onset of post exertion malaise, which practically leaves the patient house bound or bed bounds for days, weeks and even months, depending the severity of OVER doing it.

 

Sleep

And when people say “oh your just depressed take some anti depressants and you will be fine.” DONT LISTEN TO THEM! What your going through is real!!!! Last time I checked, I am pretty sure having your life swept from under your feet would take a toll emotionally. Wouldn’t you be sad, angry, frustrated at not being able to do things you were once able to do with ease. Walking one minute can feel like a marathon for some, while others walking isn’t even an option right now.

Over 17 million people are affected with M.E/CFS in the world. Many undiagnosed. The severity of M.E/CFS in patients is varied from mild to severe. either or, M.E/CFS affects your lifestyle and ability to function in day to day living.

Being diagnosed with a M.E/CFS or a chronic illness sometimes feels like getting a prison sentence, you kind of know where you are going, but you don’t know how long you are going to be in it for. We just need a well though out escape plan.

The hardest part about the illness is lack of understanding and awareness from the outside world. When you are going through something so severe and no one understands you, you feel like an alien. In other words, you feel like you are going crazy and you think everyone around you thinks your crazy to. I guess you have to put yourself in their shoes, on the outside you probably look fine, if not healthy, you probably smile and try to be “positive” in front of everyone, and you try not to give in. On the outside you look fine, but deep down on the inside your body is burning and you feel like you are slowly melting down. Don’t worry I know the feeling! What you have to remember is that on lookers cant FEEL your pain. They can only see your smile and your positive smily face when they see it. They don’t see the countless bad days, the sleepless nights, the muscle aches and pains. It’s usually behind closed doors. So unless you have had M.E/CFS it is very hard to understand it on a deeper level. It is no ones fault!

This is why it is so important to get the RIGHT help from people who understand the condition but can also give proper safe and effective guidance to deal with and overcome it.

The hardest part of M.E/CFS is knowing that there is no cure. There is no pill that will fix it, there is no set medication that the doctor can prescribe you, there is no amount of rest that will fix your problem. It feels like your world is ending or that there is no point continuing the fight. Sadly, these thoughts start to creep in when there is so much negativity around. This is why HOPE and BELIEF are the keys to ignition for recovery.

Dr Lionel Lubitz (RCH leading CFS specialist) said it best. You have to have HOPE, without hope you have nothing.

He went on to say that he had seen many patients improve and recover. He knew it was possible and so did the patients.

What you focus on becomes true. This is not because it is all in your head, it is because if you focus on recovery, you will most likely do good things for your recovery. If you focus on being sick and focus on your illness, you all most likely talk and think about how bad it is and take no action towards improving your condition at all. We know it is possible to recover. There are success stories everywhere. In fact the guy typing this article (Me Toby Morrison) overcame M.E/CFS after 4 debilitating years to now fitter and healthier then ever before. 

When I say debilitating. I am talking bed bound for months on end. In ability to walk without feeling like my legs were about to drop from underneath me. I missed most of my high school days due to M.E/CFS and for a while I thought I would never recover. What you have to remember is that most people who recover, don’t spend the time to give back or talk about their illness and recovery. They are too busy enjoying life again and living to the fullest. As you can imagine once you get better you do not want to take one minute for granted when you feel good.

I am just lucky enough to have the passion and energy to give back and really help people regain quality of life. That is my passion and I invite you to open your eyes and KNOW that if I can do it, you can to. That is why I spent the last 10 years developing the best most intensive programs there are in the world to assist people on their recovery journey back to better health.

tobycfsawareness

 

Yep that is me  post M.E/CFS spreading awareness!!!!

And while there is no quick we now know (through research) the most effective treatment programs are one through self management and self heath care which can only improving your overall health over time. M.E/CFS affects every area of your life. Sleep, nutrition, symptoms, muscle deterioration, mindset, stress and anxiety management, social life, work/school life, you name it.
A holistic approach is the key to LONG TERM recovery and improvement.

If you are struggling, know that it does get easier, it can get easier, it will get easier.

Suffering can come with a blessing in disguise if we look deeper. Your body is screaming out for help, listen to it, love it and do the RIGHT things for it. Recovery is hard, but not recovering is harder.

Post a comment below on how M.E/CFS affected your life. We can all learn something from each others stories.

You might find my video on CFS is not DEPRESSION – it has had over 10 k views on youtube and is a good one to share with friends and family. Click here.

Never give up, find that deep reason to stay here and continue getting better.

To look at our online and centre recovery programs CLICK HERE and apply now as spots are now open for our next month!

Toby Morrison
Toby Morrison
At age 16 Toby was diagnosed with CFS. According to Dr Lionel Lubitz (head doctor at the Royal Childrens Hospital), Toby’s case of CFS was “the worst he’d ever seen”. Initially spending 4 weeks at the inpatient hospital program, Toby’s journey back to health was long and difficult, but he found a way and now dedicates his life to helping others achieve the same. Toby is the founder of the CFS Health Centre in Melbourne and has released a book on CFS
  • Kate Halfpenny

    I was diagnosed with fibromyalgia and cfs in 2012 when I was just 22 – I had just graduated from uni, was living on my own, planning my future and then BAM! My life was turned upside down and I was medically advised to return to my parents house to be cared for. I was bed/house bound for a year or more before I gradually started to push myself. First volunteering one day a week at a cat shelter, then re-entering employment for one or two days a week (that’s all I could manage through the pain). I now own and manage two businesses, which takes everything I have, but I’m my own boss so that makes things a little easier. However things have been really hard this year having a kidney issue develop on top causing a relapse in the cfs/fibromyalgia. I’ve been in a really bad place lately and really need help to break through this. I need to break through so I can begin my life and future with my boyfriend (who is so supportive) – but we want to be able to settle down and have a family some day – I need to get better – help! Please x